On the twelfth of December my true love sent to me, a fever of 38 degrees.
Plus serious aches and a general feeling of malaise. Contacted the Breast Care unit who saw me same day and I had 40ml of fluid drained from my recent surgery wound. Advised to "do nothing" to avoid further fluid accumulating. Off work AGAIN.
On the thirteenth of December my true love sent to me, an emergency visit to the GP.
My wonderful GP agreed to see me at 5.30pm on a Friday as I was in a right flap about feeling so lousy and not knowing why. I was concerned I might be reacting to the Tamoxifen tablets that I had recently started. He rang microbiology who said that the fluid drained off was not showing any infection as yet. As the fever seemed to have broken and the wound wasn't that red, he thought we could probably watch and wait over the weekend.
On the sixteenth of December my true love sent to me, revised results from Microbiology.
The fluid was infected. Having tested it they knew which antibiotics should work and which wouldn't. My GP stepped in again, liaised with the hospital and prescribed Flucloxacillin. Take 4 times a day on an empty stomach. How do I fit that in around actually eating as well?!
On the seventeenth of December my true love sent to me, a planning meeting for Radiotherapy.
Went to hospital, had a CT scan, had a snakes and ladders/grid affair drawn on me with black pen and then three prison method tattoos (seriously, just ink and a needle readers - no fancy buzzy tattoo pen) dotted in the middle and sides of my torso. Yes they are permanent.
On the nineteenth of December my true love sent to me, a check up of the infected vicinity.
Saw the Breast Care nurse again. Infected area still red and hot but no further fluid accumulating. She measured the red area so that we can tell whether it is getting better or worse. She also reassured me that the infection is sensitive to other antibiotics as well so if this one doesn't clear it then they have others to try.
The good news is that today the redness seems to be reducing. I am going to limit activity until at least new year now as the nurse advises to try and give the area time to heal so that hopefully there are no pockets for fluid to gather in once I start being active again.
Onwards and upwards!
Friday 20 December 2013
Oncology Reunion
You will probably recall that several months ago my Consultant Oncologist put our relationship on hold due to me being too boring for him.
Well I am pleased to say that we were reunited on 6th December, although I fear I might still be quite boring.
He talked about the hormonal therapy Tamoxifen which I am likely to need to take on a daily basis for at least 5 years. Discussed the side effects - aching, menopause, hot flushes. I'm already there anyway after what is colloquially referred to as the "chemopause".
Then we had a chat about radiotherapy. I will be having radiotherapy to the chest wall only and not the armpit given that as far as we know there were no cancerous cells present in the armpit.
We talked for some considerable time about a Trial that I would be eligible for. The Consultant was keen for me to hear about it. I get a sense that the take up on this study hasn't been great. As far as I can gather the current position at my hospital is that they give 15 radiotherapy sessions. It used to be 25 sessions but a study was carried out which suggested that 3 weeks was adequate.
The Trial involves giving higher dosage over one week rather than three. I asked several questions including what the thinking behind this was and whether there was any suggestion that this could be beneficial in terms of the women receiving it. My chap said not really, it is simply being trialled due to demand for machines.
After answering that question and getting my "so that's your client's case then, is it...?" look in response, I think he strongly suspected then that I was unlikely to be a "yes".
He then immediately decided to cut his losses and said "I'm just going to get the consent form [for radiotherapy itself] and prescription [for tamoxifen]". Next thing I know the nurse comes back in with those items. Erm, ok then, so that's the end of our consultation. No, I didn't have any questions - thanks.
I didn't even get the chance to ask "When will I see you again?". Am I too clingy? Is it my fault??!
Well I am pleased to say that we were reunited on 6th December, although I fear I might still be quite boring.
He talked about the hormonal therapy Tamoxifen which I am likely to need to take on a daily basis for at least 5 years. Discussed the side effects - aching, menopause, hot flushes. I'm already there anyway after what is colloquially referred to as the "chemopause".
Then we had a chat about radiotherapy. I will be having radiotherapy to the chest wall only and not the armpit given that as far as we know there were no cancerous cells present in the armpit.
We talked for some considerable time about a Trial that I would be eligible for. The Consultant was keen for me to hear about it. I get a sense that the take up on this study hasn't been great. As far as I can gather the current position at my hospital is that they give 15 radiotherapy sessions. It used to be 25 sessions but a study was carried out which suggested that 3 weeks was adequate.
The Trial involves giving higher dosage over one week rather than three. I asked several questions including what the thinking behind this was and whether there was any suggestion that this could be beneficial in terms of the women receiving it. My chap said not really, it is simply being trialled due to demand for machines.
After answering that question and getting my "so that's your client's case then, is it...?" look in response, I think he strongly suspected then that I was unlikely to be a "yes".
He then immediately decided to cut his losses and said "I'm just going to get the consent form [for radiotherapy itself] and prescription [for tamoxifen]". Next thing I know the nurse comes back in with those items. Erm, ok then, so that's the end of our consultation. No, I didn't have any questions - thanks.
I didn't even get the chance to ask "When will I see you again?". Am I too clingy? Is it my fault??!
Wednesday 27 November 2013
Top Pain Chart Countdown
I had my post op consultation last week. Mentioned the difficulty in moving my arm certain ways and my Consultant thinks it is "cording" which is something to do with the damaged lymphatic system in my arm since the lymph nodes were removed. It feels as it sounds, like there is a cord or wire very painfully restricting one's range of movement.
I have stretched it out which bloody hurt but did help a bit. As it happens, I was trying to think the other day what was the most painful thing I had ever experienced. Two labours with no pain relief? Immediate aftermath of surgery? That ear infection I had when I was 21?
Nope, none of those. It was first-time breastfeeding. My dear, stubborn first born thought she knew how to do it and would not be shown - the midwives trying to help me with this identified her as "feisty" on her very first night on this planet. She rapidly ruined my poor novice nipples and for the first couple of weeks I experienced the worst pain I'd ever had. Every. Single. Feed. But I was determined to carry on as obviously I could not allow my days old daughter to be more stubborn than me...
Anyway getting back to the point (I'm sure you were hoping we might arrive at one at some stage), the pain of stretching out cording is on a par with the early breastfeeding experience although marginally better overall, given that I have a choice when I stretch out the cording as opposed to having to do it every two hours including during the night. It doesn't involve dirty nappies each time either.
My Consultant also had some good news for me which was the 9 further lymph nodes he had removed were all clear of cancer cells. This means that as far as we know, the only lymph node affected was the one which was removed during my first surgery back in May. This was the best result that I could have expected from the latest op so I was happy enough with it. The worst outcome would have been for him to tell me that they had found live cancer cells in the nodes as that would have meant that all the chemo had not worked at all.
I am seeing the Oncologist on 6th December to talk about starting radiotherapy. I just hope that the range of movement in my arm is good enough for the radiation beam to access the scar site otherwise if I have to stretch out the arm every time for 20 plus sessions, radiotherapy might quickly be making a new entry at the top of my pain chart!
I have stretched it out which bloody hurt but did help a bit. As it happens, I was trying to think the other day what was the most painful thing I had ever experienced. Two labours with no pain relief? Immediate aftermath of surgery? That ear infection I had when I was 21?
Nope, none of those. It was first-time breastfeeding. My dear, stubborn first born thought she knew how to do it and would not be shown - the midwives trying to help me with this identified her as "feisty" on her very first night on this planet. She rapidly ruined my poor novice nipples and for the first couple of weeks I experienced the worst pain I'd ever had. Every. Single. Feed. But I was determined to carry on as obviously I could not allow my days old daughter to be more stubborn than me...
Anyway getting back to the point (I'm sure you were hoping we might arrive at one at some stage), the pain of stretching out cording is on a par with the early breastfeeding experience although marginally better overall, given that I have a choice when I stretch out the cording as opposed to having to do it every two hours including during the night. It doesn't involve dirty nappies each time either.
My Consultant also had some good news for me which was the 9 further lymph nodes he had removed were all clear of cancer cells. This means that as far as we know, the only lymph node affected was the one which was removed during my first surgery back in May. This was the best result that I could have expected from the latest op so I was happy enough with it. The worst outcome would have been for him to tell me that they had found live cancer cells in the nodes as that would have meant that all the chemo had not worked at all.
I am seeing the Oncologist on 6th December to talk about starting radiotherapy. I just hope that the range of movement in my arm is good enough for the radiation beam to access the scar site otherwise if I have to stretch out the arm every time for 20 plus sessions, radiotherapy might quickly be making a new entry at the top of my pain chart!
Thursday 21 November 2013
Stunted Recovery
I came home from hospital last Wednesday. Had the drain device removed on Monday - much less painful than I expected, the worst part was peeling off the dressings.
Unfortunately it would appear that the operation I have had is of the rather unique variety of procedures which gets worse as opposed to better on every subsequent day of so called "recovery".
Every day a new nerve in my arm reawakens from the operation and presumably realises "oh, actually, I appear to have been severed or severely damaged. Let's make my condition known to my human straight away!".
The result of this is that straightening the arm out or putting on anything other than a zip or button up top is very difficult. I have also taken to moving around with that arm slightly bent at all times. Touching the outside of the arm is a no-no as the sensation feels like very bad sunburn.
I am seeing my Consultant tomorrow so I will be able to get some advice as to whether I am doing the right thing by trying to stretch the arm out despite the pain and stiffness. It's nothing anyone has done wrong by the way, these are all common and recognised effects of this procedure. The benefits are supposed to outweigh the drawbacks and that is the basis upon which anyone having an operation gives informed consent. Unfortunately there is always some collateral damage which could sadly affect me for the rest of my life.
However I hope that what is happening here is that things are getting worse before they start to get better, fingers crossed.
At least it wasn't my dominant arm!
Unfortunately it would appear that the operation I have had is of the rather unique variety of procedures which gets worse as opposed to better on every subsequent day of so called "recovery".
Every day a new nerve in my arm reawakens from the operation and presumably realises "oh, actually, I appear to have been severed or severely damaged. Let's make my condition known to my human straight away!".
The result of this is that straightening the arm out or putting on anything other than a zip or button up top is very difficult. I have also taken to moving around with that arm slightly bent at all times. Touching the outside of the arm is a no-no as the sensation feels like very bad sunburn.
I am seeing my Consultant tomorrow so I will be able to get some advice as to whether I am doing the right thing by trying to stretch the arm out despite the pain and stiffness. It's nothing anyone has done wrong by the way, these are all common and recognised effects of this procedure. The benefits are supposed to outweigh the drawbacks and that is the basis upon which anyone having an operation gives informed consent. Unfortunately there is always some collateral damage which could sadly affect me for the rest of my life.
However I hope that what is happening here is that things are getting worse before they start to get better, fingers crossed.
At least it wasn't my dominant arm!
Tuesday 12 November 2013
Second ever general anaesthetic survived!
So today I had my Axillary (armpit) lymph node clearance. I was told to arrive at hospital at 7.30am. Despite my real suspicion that it probably would not matter if I didn't arrive until lunchtime, I duly set my alarm for 5.30am.
Got to hospital at 7.30, went in the wrong lift, through two incorrect zones and after giving in and reading the actual directions signs, made it to Surgical Admissions at 7.40.
Saw my Consultant by 9.00. He draws on me then drip feeds me the first unwelcome bit of information which is that I am not going to be operated on until after lunch. His lunch, that is, given that I am nil by mouth and have not eaten since 8pm Sunday.
Then I see the nurse to fill in the usual paperwork. After that another nurse takes pity on me and moves me out of the generic departure lounge and in to my own room with a bed. Pleased with that as the chairs were already making my bum ache.
The Anaesthetist comes to see me and drip feeds the next negative nugget of information - I am in fact last on the list. Not just after lunch anymore, last. As per my previous post I expected this so I was not too devastated. Just hungry. It's amazing how much the hours in the day stretch out when they are not punctuated by nice cups of tea and various meals and snacks.
The Anaesthetist also tells me that they do tend to put the "healthier" patients last, so presumably I was considered the patient most likely to survive 24 hours with no food and 8 hours with no water. And here I am, so they were right.
Went down for the op at 4.00 and was in recovery by 6.30. Tried a new (new to me) pain drug, Fentanyl. Quite effective. Off that now though and just on paracetamol and ibuprofen but I am allowed Tramadol too if I get bored, oops sorry of course what I meant to say was if it gets painful!!
I am now on the ward and still awake thanks to the anaesthetist reintroducing me to my old friend Dexamethasone, aka red bull on steroids. The nurse offered me a nice cup of tea just now and promptly received drinks orders from the two beds next to me as well. So we're all having a jolly post-midnight beverage. I'm pleased to report that I don't feel as much like I've been run over by a bus as I did after my last op and I don't mind being on the main ward this time either. I was a bit afraid of it at first but I am actually quite liking being part of the comings and goings.
Anyway, I'm off to do some more ceiling gazing now and drink the rest of my tea. TTFN.
Got to hospital at 7.30, went in the wrong lift, through two incorrect zones and after giving in and reading the actual directions signs, made it to Surgical Admissions at 7.40.
Saw my Consultant by 9.00. He draws on me then drip feeds me the first unwelcome bit of information which is that I am not going to be operated on until after lunch. His lunch, that is, given that I am nil by mouth and have not eaten since 8pm Sunday.
Then I see the nurse to fill in the usual paperwork. After that another nurse takes pity on me and moves me out of the generic departure lounge and in to my own room with a bed. Pleased with that as the chairs were already making my bum ache.
The Anaesthetist comes to see me and drip feeds the next negative nugget of information - I am in fact last on the list. Not just after lunch anymore, last. As per my previous post I expected this so I was not too devastated. Just hungry. It's amazing how much the hours in the day stretch out when they are not punctuated by nice cups of tea and various meals and snacks.
The Anaesthetist also tells me that they do tend to put the "healthier" patients last, so presumably I was considered the patient most likely to survive 24 hours with no food and 8 hours with no water. And here I am, so they were right.
Went down for the op at 4.00 and was in recovery by 6.30. Tried a new (new to me) pain drug, Fentanyl. Quite effective. Off that now though and just on paracetamol and ibuprofen but I am allowed Tramadol too if I get bored, oops sorry of course what I meant to say was if it gets painful!!
I am now on the ward and still awake thanks to the anaesthetist reintroducing me to my old friend Dexamethasone, aka red bull on steroids. The nurse offered me a nice cup of tea just now and promptly received drinks orders from the two beds next to me as well. So we're all having a jolly post-midnight beverage. I'm pleased to report that I don't feel as much like I've been run over by a bus as I did after my last op and I don't mind being on the main ward this time either. I was a bit afraid of it at first but I am actually quite liking being part of the comings and goings.
Anyway, I'm off to do some more ceiling gazing now and drink the rest of my tea. TTFN.
Wednesday 23 October 2013
More ops, more scars
Met with the Consultant Breast Surgeon last Friday to talk about the next step. He seemed to think I might have forgotten what was going to happen next - perhaps some patients do??! - so he gently reminds me that we had talked about doing the Axillary Lymph Node Dissection (sounds like a laboratory procedure but actually means removing all lymph nodes under armpit).
I confirmed my recollection of this plan of action and said that me and the Consultant Oncologist had been proceeding on the basis that this is the next step.
Prior to this meeting I had managed to get my blood test for anaemia done at the GP surgery. The GP was ringing me that afternoon to discuss my results and in the meantime I had rung the receptionist that morning who had told me that my haemoglobin was 8.9. That's not good and it was the same level it went down to when I had to have the transfusion before. I told my Surgeon about this and he made some enquiries and eventually got a printout of the full blood count which established that my haemoglobin was actually 10, so still anaemic but not as bad as 8.9 and it was my white blood cells which were at 8.9, which is a bloody good level of white blood cells to have achieved less than 2 weeks post chemo! Well done, body. Shame you didn't show the same level of efficiency when dealing with cancerous tumours.
Anaemia panic over we decided the hb levels would probably come up to normal again by themselves so we were pretty safe arranging a date for surgery. That operation has therefore been booked for 11th November. I've been warned that it's an "all day list". Anyone who has been in this situation will know that is subtle doctor speak for "you will spend the entire day starving. Starving, I tell you!!!"
The other thing that happened is that on examination the Surgeon noticed my currently-redundant-but-still-much-loved port. He's taking it out. No, I don't want to talk about it.
I confirmed my recollection of this plan of action and said that me and the Consultant Oncologist had been proceeding on the basis that this is the next step.
Prior to this meeting I had managed to get my blood test for anaemia done at the GP surgery. The GP was ringing me that afternoon to discuss my results and in the meantime I had rung the receptionist that morning who had told me that my haemoglobin was 8.9. That's not good and it was the same level it went down to when I had to have the transfusion before. I told my Surgeon about this and he made some enquiries and eventually got a printout of the full blood count which established that my haemoglobin was actually 10, so still anaemic but not as bad as 8.9 and it was my white blood cells which were at 8.9, which is a bloody good level of white blood cells to have achieved less than 2 weeks post chemo! Well done, body. Shame you didn't show the same level of efficiency when dealing with cancerous tumours.
Anaemia panic over we decided the hb levels would probably come up to normal again by themselves so we were pretty safe arranging a date for surgery. That operation has therefore been booked for 11th November. I've been warned that it's an "all day list". Anyone who has been in this situation will know that is subtle doctor speak for "you will spend the entire day starving. Starving, I tell you!!!"
The other thing that happened is that on examination the Surgeon noticed my currently-redundant-but-still-much-loved port. He's taking it out. No, I don't want to talk about it.
Friday 11 October 2013
Blood test required. Volunteers?
Well what have I been doing lately? One week post chemo and the side effects have been mostly the same as the previous two cycles.
I went to work today but felt very tired by the afternoon. I also notice myself getting lightheaded and breathless which is what happened before when I became anaemic and needed the blood transfusion. Rang the ward for advice given that I don't have any further blood tests lined up at the moment and if I get to pre assessment for my next surgery with haemoglobin as low as it went before my last transfusion then I rather suspect that I will fail the pre assessment.
The nurse told me to go to my GP surgery on Monday and get a blood test and a cross match done in case I do need further blood. I'm sure the GP receptionist will give me a suitably warm and welcoming response when I ring up trying to get them to simply do all that stuff there and then on my say so, I can't see myself getting within a 50 metre radius of a practice nurse for a same day appointment, especially what with flu injection shenanigans going on at the moment too. I may be pleasantly surprised. We shall see.
Saw the Genetics lady for my follow up appointment on Thursday. She is lovely, very enthusiastic about the research she is involved in. She confirmed that the BRCA 2 gene does not skip a generation, so what that means here is that if I have it then at least one of my parents must have it too. The testing process for my relatives is much quicker now they have my results as they know exactly what they are looking for in the DNA. Seriously, it has like numbers and grid reference codes and everything. She showed me mine on the results letter. Pretty clever stuff.
She invited me to attend the support group in Exeter for people who have the BRCA genes. Now I'm all for helping each other and yes upon reflection I can see how I could be helpful and reassuring to someone considering a double mastectomy because yes I have had that same operation. However, other than that, what would we talk about?? I can see boundless foot in mouth opportunities occurring at a group populated by both ends of the spectrum. I'm envisaging one circle of attendees evangelising about the benefits of preventative mastectomies and timely GP referrals for BRCA testing whilst another group of actual cancer sufferers huddle around congratulating themselves on "taking one for the team" by being the one to get cancer thereby selflessly alerting their relatives to the existence of the BRCA gene in their family. Awkward...
I went to work today but felt very tired by the afternoon. I also notice myself getting lightheaded and breathless which is what happened before when I became anaemic and needed the blood transfusion. Rang the ward for advice given that I don't have any further blood tests lined up at the moment and if I get to pre assessment for my next surgery with haemoglobin as low as it went before my last transfusion then I rather suspect that I will fail the pre assessment.
The nurse told me to go to my GP surgery on Monday and get a blood test and a cross match done in case I do need further blood. I'm sure the GP receptionist will give me a suitably warm and welcoming response when I ring up trying to get them to simply do all that stuff there and then on my say so, I can't see myself getting within a 50 metre radius of a practice nurse for a same day appointment, especially what with flu injection shenanigans going on at the moment too. I may be pleasantly surprised. We shall see.
Saw the Genetics lady for my follow up appointment on Thursday. She is lovely, very enthusiastic about the research she is involved in. She confirmed that the BRCA 2 gene does not skip a generation, so what that means here is that if I have it then at least one of my parents must have it too. The testing process for my relatives is much quicker now they have my results as they know exactly what they are looking for in the DNA. Seriously, it has like numbers and grid reference codes and everything. She showed me mine on the results letter. Pretty clever stuff.
She invited me to attend the support group in Exeter for people who have the BRCA genes. Now I'm all for helping each other and yes upon reflection I can see how I could be helpful and reassuring to someone considering a double mastectomy because yes I have had that same operation. However, other than that, what would we talk about?? I can see boundless foot in mouth opportunities occurring at a group populated by both ends of the spectrum. I'm envisaging one circle of attendees evangelising about the benefits of preventative mastectomies and timely GP referrals for BRCA testing whilst another group of actual cancer sufferers huddle around congratulating themselves on "taking one for the team" by being the one to get cancer thereby selflessly alerting their relatives to the existence of the BRCA gene in their family. Awkward...
Saturday 5 October 2013
Sixth Chemo
Yesterday I had my sixth chemo, the final session of this treatment cycle.
My bloods were fine, my haemoglobin was back up to 9.8 which is still not particularly high given that normal is around 12, but the blood transfusion did its job and kept me out of the danger zone this time.
Treatment itself went without any unexpected hitches and then Helen and I headed off to Totnes and had a lush afternoon tea!
I always stay at my friend's house the night after chemo. We had fish n chips and watched New Moon, the second of the Twilight saga. Pleased to report that said friend is well in to it now and even talked of getting up at 6am today to watch the next one. Well folks, it's now 5.51am and no sign of her yet, lol. The kids stayed over at my mum's so Dan got a nice break too.
Later today I will be popping over to Torbay for my usual white blood cell boosting injection which I must say seems to have worked very well in preventing serious infection so fingers crossed it does so after this treatment as well.
On 18th October I am seeing my surgeon to get a date for my next op. I imagine that will take place in November as my Oncologist is keen to get the scar healed again so that I can have my radiotherapy. So disaster permitting and apart from today's flying visit for the injection, I have another two weeks before I need to be at hospital again!
My bloods were fine, my haemoglobin was back up to 9.8 which is still not particularly high given that normal is around 12, but the blood transfusion did its job and kept me out of the danger zone this time.
Treatment itself went without any unexpected hitches and then Helen and I headed off to Totnes and had a lush afternoon tea!
I always stay at my friend's house the night after chemo. We had fish n chips and watched New Moon, the second of the Twilight saga. Pleased to report that said friend is well in to it now and even talked of getting up at 6am today to watch the next one. Well folks, it's now 5.51am and no sign of her yet, lol. The kids stayed over at my mum's so Dan got a nice break too.
Later today I will be popping over to Torbay for my usual white blood cell boosting injection which I must say seems to have worked very well in preventing serious infection so fingers crossed it does so after this treatment as well.
On 18th October I am seeing my surgeon to get a date for my next op. I imagine that will take place in November as my Oncologist is keen to get the scar healed again so that I can have my radiotherapy. So disaster permitting and apart from today's flying visit for the injection, I have another two weeks before I need to be at hospital again!
D.N.A?? Well, take it awayyyyy....!
Firstly, only ancient Ab Fab fans like me will "get" the title of this post.
I received a call from the Genetics testing lady on Thursday in relation to the test we did in July following my diagnosis.
Now if she was calling me this could only mean that she had "news" because she had already said that if nothing showed up on the test then I would be sent a letter confirming a negative result and I would not need to see her again.
Despite knowing this, the bizarreness of the cancer experience meant that having had my pre chemo blood test the day before, initially I was only glad to hear that the person calling from the hospital was not someone calling to say that due to a blood problem Friday's chemo could not proceed.
So having established that in my mind I thought I had better concentrate on what this lady had to tell me. My blood tests had been submitted and tested for the BRCA 1 and 2 gene mutations - yes, just like Angelina Jolie, get me.
I have tested positive for what the newspapers like to encouragingly describe as the DEADLY BRCA 2 GENE. In fact, everyone has the gene but not everyone has the genetic mutation that stops your body from properly protecting you against tumour cells. According to statistics, the BRCA mutations are responsible for around 5% of breast cancers.
There are pros and cons to this result.
Pros:
1. All bets are off in relation to whether the health finger pointers can say that I caused my cancer by any sort of lifestyle issues such as drinking, taking the pill, etc etc. It was written since I was first born. For what it is worth I don't believe in the alleged lifestyle causes anyway to any great extent. I take the view that they are largely circumstantial "findings" put out there by research bodies in order to justify large amounts of time and money spent on research and trials which (through no fault of the researchers) come back inconclusive. It doesn't sound good to say "thanks for the million pounds in funding, we conclude that cancer is actually pretty random". I thought the same about the cot death research and warnings when I had my babies and it really doesn't help to make anybody think that what is literally a purely random and devastatingly unlucky occurrence is something that they could have avoided.
2. I know I have an inherited gene now and so my relevant relatives can be tested too, including my girls when they reach 18, if they decide to have the test. It's only a blood test but there is also a significant amount of genetic counselling that goes with it to prepare you for the possible result and to make sure you want to take the test given the decisions that might follow for you if you do receive a positive result. I would imagine this situation to be very difficult for someone who has not actually been diagnosed with cancer as yet but still faced with having to decide between yearly scans or actual preventative mastectomy surgery.
3. I had already made my surgery decisions on the basis that I would test positive for the mutation so at least I am not facing a preventative right hand side mastectomy now and I have taken the first steps towards arranging for preventative gynaecological procedures to be carried out too. I will re-visit that with my surgeon and oncologist now that I have my genetics test result.
Cons:
1. Erm, I am BRCA 2 positive which means that I have a much higher risk of breast and ovarian cancer, plus I would venture to add, other cancers generally.
2. In the early 2000's when I first heard about these tests I saw my doctor and and asked him to refer me. He scoffed and said that the tests were still very new and he did not think my family history would qualify me for referral. Since receiving this result I have checked the NICE guidelines for GP referrals which were in place at the time and it appears that I would have qualified given the presence of breast and other cancers in two "second degree" relatives being a grandmother and aunt on the paternal line along with a guideline that where the history is suggested to be following the paternal line a referral should always be considered even if other criteria are not met. There's a lesson here - if you think you are being fobbed off, try checking the relevant NICE guidelines online and produce them to your GP if necessary. But I didn't even know such things existed at the time. I can't change the past. Them's the rubs.
Having cancer has changed my life and my outlook totally. I rushed everything, got stressed out about everything and was far far too precious about things before diagnosis. It has caused me to take a long hard look at my life and my whole perspective on everything. I don't want to sound clichéd and I know these things are so easy to say when one is still feeling relatively well physically, but I am proud of what I've become since facing this diagnosis and I am not sure that knowing about BRCA 2 earlier, although it could have produced a better outcome for me in that I might have been able to avoid getting cancer, I don't think it would have been enough to make me change my ways as effectively!! It has surprised even me that such a devastating life event has actually improved my day to day attitude and family life. But it's true, and I'm sure there are a number of other cancer sufferers past and present who will vouch for that because once you are diagnosed then in the classic words of Andy Dufresne, you "get busy living, or get busy dying".
I received a call from the Genetics testing lady on Thursday in relation to the test we did in July following my diagnosis.
Now if she was calling me this could only mean that she had "news" because she had already said that if nothing showed up on the test then I would be sent a letter confirming a negative result and I would not need to see her again.
Despite knowing this, the bizarreness of the cancer experience meant that having had my pre chemo blood test the day before, initially I was only glad to hear that the person calling from the hospital was not someone calling to say that due to a blood problem Friday's chemo could not proceed.
So having established that in my mind I thought I had better concentrate on what this lady had to tell me. My blood tests had been submitted and tested for the BRCA 1 and 2 gene mutations - yes, just like Angelina Jolie, get me.
I have tested positive for what the newspapers like to encouragingly describe as the DEADLY BRCA 2 GENE. In fact, everyone has the gene but not everyone has the genetic mutation that stops your body from properly protecting you against tumour cells. According to statistics, the BRCA mutations are responsible for around 5% of breast cancers.
There are pros and cons to this result.
Pros:
1. All bets are off in relation to whether the health finger pointers can say that I caused my cancer by any sort of lifestyle issues such as drinking, taking the pill, etc etc. It was written since I was first born. For what it is worth I don't believe in the alleged lifestyle causes anyway to any great extent. I take the view that they are largely circumstantial "findings" put out there by research bodies in order to justify large amounts of time and money spent on research and trials which (through no fault of the researchers) come back inconclusive. It doesn't sound good to say "thanks for the million pounds in funding, we conclude that cancer is actually pretty random". I thought the same about the cot death research and warnings when I had my babies and it really doesn't help to make anybody think that what is literally a purely random and devastatingly unlucky occurrence is something that they could have avoided.
2. I know I have an inherited gene now and so my relevant relatives can be tested too, including my girls when they reach 18, if they decide to have the test. It's only a blood test but there is also a significant amount of genetic counselling that goes with it to prepare you for the possible result and to make sure you want to take the test given the decisions that might follow for you if you do receive a positive result. I would imagine this situation to be very difficult for someone who has not actually been diagnosed with cancer as yet but still faced with having to decide between yearly scans or actual preventative mastectomy surgery.
3. I had already made my surgery decisions on the basis that I would test positive for the mutation so at least I am not facing a preventative right hand side mastectomy now and I have taken the first steps towards arranging for preventative gynaecological procedures to be carried out too. I will re-visit that with my surgeon and oncologist now that I have my genetics test result.
Cons:
1. Erm, I am BRCA 2 positive which means that I have a much higher risk of breast and ovarian cancer, plus I would venture to add, other cancers generally.
2. In the early 2000's when I first heard about these tests I saw my doctor and and asked him to refer me. He scoffed and said that the tests were still very new and he did not think my family history would qualify me for referral. Since receiving this result I have checked the NICE guidelines for GP referrals which were in place at the time and it appears that I would have qualified given the presence of breast and other cancers in two "second degree" relatives being a grandmother and aunt on the paternal line along with a guideline that where the history is suggested to be following the paternal line a referral should always be considered even if other criteria are not met. There's a lesson here - if you think you are being fobbed off, try checking the relevant NICE guidelines online and produce them to your GP if necessary. But I didn't even know such things existed at the time. I can't change the past. Them's the rubs.
Having cancer has changed my life and my outlook totally. I rushed everything, got stressed out about everything and was far far too precious about things before diagnosis. It has caused me to take a long hard look at my life and my whole perspective on everything. I don't want to sound clichéd and I know these things are so easy to say when one is still feeling relatively well physically, but I am proud of what I've become since facing this diagnosis and I am not sure that knowing about BRCA 2 earlier, although it could have produced a better outcome for me in that I might have been able to avoid getting cancer, I don't think it would have been enough to make me change my ways as effectively!! It has surprised even me that such a devastating life event has actually improved my day to day attitude and family life. But it's true, and I'm sure there are a number of other cancer sufferers past and present who will vouch for that because once you are diagnosed then in the classic words of Andy Dufresne, you "get busy living, or get busy dying".
Tuesday 24 September 2013
Common overeater's excuse debunked
One interesting thing about having this illness is that it has provided me with the opportunity to conduct an (entirely unscientific and un-controlled) experiment in to the suggestion that certain illnesses and tablets "make you put on weight".
I have always been massively unconvinced of this but unable to say anything to contradict the suggestion as I have not been in that position.
Well I am pleased to confirm that I am now in that position as I have been taking huge doses of one of the major "my tablets made me put on weight" culprits, corticosteroids.
Yes, the steroids increased my appetite. Yes, I have been eating more. Yes, I have put on some weight.
BUT it hasn't been the tablets themselves that have made me put on weight! A tablet is a tablet. It does not as far as I am aware convert itself to pounds of excess weight as soon as you swallow it. It may increase your appetite and you may eat some extra food.
Lawyer speak now - where, ladies and gents, is the causal link? The situation is not "I take tablet, I gain weight". No. There is an intervening event here. The sequence is in fact "I take tablet, my appetite increases and THEN, I knowingly and voluntarily consume more than the recommended amount of daily calories for my size, I gain weight".
I'm not saying that eating is wrong, Christ, whatever makes one happy, life is short. But it has been nice to have my long held suspicions proved right about this common "I take tablet, I gain weight" myth.
Erm, I rest my case. Nobody ever uses that phrase in Court in real life, btw.
<climbs down from soapbox to go and fetch another biscuit>
I have always been massively unconvinced of this but unable to say anything to contradict the suggestion as I have not been in that position.
Well I am pleased to confirm that I am now in that position as I have been taking huge doses of one of the major "my tablets made me put on weight" culprits, corticosteroids.
Yes, the steroids increased my appetite. Yes, I have been eating more. Yes, I have put on some weight.
BUT it hasn't been the tablets themselves that have made me put on weight! A tablet is a tablet. It does not as far as I am aware convert itself to pounds of excess weight as soon as you swallow it. It may increase your appetite and you may eat some extra food.
Lawyer speak now - where, ladies and gents, is the causal link? The situation is not "I take tablet, I gain weight". No. There is an intervening event here. The sequence is in fact "I take tablet, my appetite increases and THEN, I knowingly and voluntarily consume more than the recommended amount of daily calories for my size, I gain weight".
I'm not saying that eating is wrong, Christ, whatever makes one happy, life is short. But it has been nice to have my long held suspicions proved right about this common "I take tablet, I gain weight" myth.
Erm, I rest my case. Nobody ever uses that phrase in Court in real life, btw.
<climbs down from soapbox to go and fetch another biscuit>
Tuesday 17 September 2013
New blood, please
Well yesterday's transfusion procedure was a marathon. Started off fine, my sister and I loaded up with a picnic from M&S and nonchalantly parked up at the hospital and strolled in to the chemo factory for my 11.30 appointment.
Now I don't like to be at the chemo factory very long as although the nurses are great, I don't like the place and I don't like the smell.
If things go well with a chemo session I can be in and out of there in less than two hours. For this process I knew realistically I would be there at least 5 hours.
As above, appointment time was 11.30. Helen and I sat there until 1.25pm literally just waiting, then I finally heard one of the nurses wondering aloud where my notes were. Most people might have been miffed at this point but I was just relieved to hear that I still appeared to exist in their eyes as I was starting to wonder.
Ten minutes later the notes are found and I am hooked up to my drip. Oh don't get excited, it wasn't the actual blood. No, the doctor hadn't even been invited to prescribe the blood yet! After realising this glaring omission ie that the blood wasn't there and wasn't jolly well going to be until someone wrote up a script for it, one of the junior nurses was dispatched to get that done.
She reappears with blood, hallelujah. They plumb it in and the four hour transfusion starts at approx 1.40pm, two hours later than scheduled. Clearly the transfusion goes the speed it goes and cannot be sped up so I am majorly discouraged by the fact that I have spent the preceding two hours sat on my arse with no blood dripping in to my veins and now have to spend a further four hours doing the same but with blood this time. Maybe I am being a grouch but I do find it difficult to accept that everyone else who was attended to and had their drugs etc set up before me had an earlier appointment time that day.
Honestly, I think they might have forgotten I was there. But what would have been the point in moaning at them about it, as that is not good karma for anyone.
The procedure was uneventful save for a slight temperature spike at the start which then went down again after some paracetamol. Also one of the male nurses accused Helen and I of "plotting" behind our curtain, lol. More accurately, I think we were doing what is known as "bitching"... But plotting sounds much better.
Finally got out of that place around 6pm last night - seven hours after arriving.
Expected to feel completely spiffing this morning but temporarily forgot that erm, I had chemo last Friday. Blood transfusions do not override normal chemo side effects it turns out! Silly me. However I am feeling less lightheaded this afternoon so fingers crossed the red stuff will do its job and see me through to the next chemo cycle.
Now I don't like to be at the chemo factory very long as although the nurses are great, I don't like the place and I don't like the smell.
If things go well with a chemo session I can be in and out of there in less than two hours. For this process I knew realistically I would be there at least 5 hours.
As above, appointment time was 11.30. Helen and I sat there until 1.25pm literally just waiting, then I finally heard one of the nurses wondering aloud where my notes were. Most people might have been miffed at this point but I was just relieved to hear that I still appeared to exist in their eyes as I was starting to wonder.
Ten minutes later the notes are found and I am hooked up to my drip. Oh don't get excited, it wasn't the actual blood. No, the doctor hadn't even been invited to prescribe the blood yet! After realising this glaring omission ie that the blood wasn't there and wasn't jolly well going to be until someone wrote up a script for it, one of the junior nurses was dispatched to get that done.
She reappears with blood, hallelujah. They plumb it in and the four hour transfusion starts at approx 1.40pm, two hours later than scheduled. Clearly the transfusion goes the speed it goes and cannot be sped up so I am majorly discouraged by the fact that I have spent the preceding two hours sat on my arse with no blood dripping in to my veins and now have to spend a further four hours doing the same but with blood this time. Maybe I am being a grouch but I do find it difficult to accept that everyone else who was attended to and had their drugs etc set up before me had an earlier appointment time that day.
Honestly, I think they might have forgotten I was there. But what would have been the point in moaning at them about it, as that is not good karma for anyone.
The procedure was uneventful save for a slight temperature spike at the start which then went down again after some paracetamol. Also one of the male nurses accused Helen and I of "plotting" behind our curtain, lol. More accurately, I think we were doing what is known as "bitching"... But plotting sounds much better.
Finally got out of that place around 6pm last night - seven hours after arriving.
Expected to feel completely spiffing this morning but temporarily forgot that erm, I had chemo last Friday. Blood transfusions do not override normal chemo side effects it turns out! Silly me. However I am feeling less lightheaded this afternoon so fingers crossed the red stuff will do its job and see me through to the next chemo cycle.
Saturday 14 September 2013
Twilight and Transfusions
Went to my fifth chemo today. First odd thing to happen was being called in by the nurse straightaway. Usually there is at least a half an hour wait. I assumed this was while my drugs were prepared.
So upon being called straight in I assumed there must be a problem. However, we get in to the room and the nurse starts unwrapping things as usual.
I ask him if all was good to go with my bloods. "Oh yes" he says, carrying on busily unwrapping. I can still sense a massive "But...".
Sure enough he then casually says "BUT your haemoglobin is getting lower so I've booked you in for a blood transfusion on Monday". Boom, just like that!
Turns out my hb levels have now decreased from an acceptable 10 to around 8.9. That level is ok for chemo but they don't want it to decrease even more and affect my final treatment session currently scheduled for October 4th. Fair enough I suppose. I ascertain that the blood can go in through my port - good thing. I further ascertain that the transfusion will take 4 HOURS!!!! WTF??! I am having two bags of blood. Will it even all fit? Apparently I will feel " like an 18 year old" afterwards. So we shall see.
Other than that I am staying at my lovely friend's house tonight and I have introduced her to the Twilight saga. Worried at first that it might be a massive fail but she loves it and wants to know why I didn't bring the second one to watch in the morning. Result!
So upon being called straight in I assumed there must be a problem. However, we get in to the room and the nurse starts unwrapping things as usual.
I ask him if all was good to go with my bloods. "Oh yes" he says, carrying on busily unwrapping. I can still sense a massive "But...".
Sure enough he then casually says "BUT your haemoglobin is getting lower so I've booked you in for a blood transfusion on Monday". Boom, just like that!
Turns out my hb levels have now decreased from an acceptable 10 to around 8.9. That level is ok for chemo but they don't want it to decrease even more and affect my final treatment session currently scheduled for October 4th. Fair enough I suppose. I ascertain that the blood can go in through my port - good thing. I further ascertain that the transfusion will take 4 HOURS!!!! WTF??! I am having two bags of blood. Will it even all fit? Apparently I will feel " like an 18 year old" afterwards. So we shall see.
Other than that I am staying at my lovely friend's house tonight and I have introduced her to the Twilight saga. Worried at first that it might be a massive fail but she loves it and wants to know why I didn't bring the second one to watch in the morning. Result!
Thursday 12 September 2013
Rejected
Well, it finally happened. Despite my best efforts to appear interesting, when head honcho Oncologist returned and saw me last Friday he was clearly so bored of me that he said since I seemed to have coped ok with the first Docetaxel I probably would with the others so he does not want to see me every three weeks anymore. I feel mortified and rejected.
However as it turns out, seems he still wishes to retain a foothold in my life as he subsequently sent me a letter giving me an appointment for November. Hmmm, mind games, eh?
I also totally accidentally hit on a fabulous reverse psychology tactic. Now I am telling you this in confidence and don't just use it willy nilly on every Consultant you may meet. It may turn out to be overkill, or inappropriate to the situation and it won't always work. It is like the bazooka of tactics.
What happened was, he casually asked me whether we had talked about removal of ovaries. I said no we hadn't but that I did want it done. Along with removal of womb and anything else remotely connected with the devil tumour driver, oestrogen. I then very politely said "but of course I'm not sure if I fit the criteria for that". Well. He scoffed at the mere mention of criteria and came over all powerful and impressive and "if I say it shall be done, then it shall be done". So fingers crossed the bank of daddy won't have to end up funding that after all.
We're waiting for the results of my genetic testing first before we talk more about that.
So what else has been occurring apart from my doctor sacking me?
Went for pre chemo blood test yesterday. Noticed today that the nurse has the honour of being the first one ever to bruise the skin over my port. No idea how that happened. Thought that only occurred when looking for a vein.
Fifth chemo tomorrow. On a steroid hyper today after taking the 16mg dexamethasone pre-drug (like pre-drinks but not nearly as fun).
Have also had A COUGH. With all the drama about possible neutropenic sepsis - where you get an infection whilst white blood cells are low - I had kind of forgotten that not every single viral illness will require hospital admission. Have been checking my temperature and keeping an eye on things and we will see whether it goes away on its own.
Finally, I am being referred back to my breast surgeon who wants to hack away at my armpit next. Oncologist said this surgery could not take place until late October once my white blood cells replenish after final chemo. I am now very worried that my surgeon might just book me in before I have had a chance to tell him it needs to be after my birthday drinks on 2nd November. I'm sure he will see me to get a Consent Form signed (at least, I don't remember signing one for this yet!!) and I can sound him out about a date then. Now before you write me off as the sort of pleb who thinks the NHS schedule revolves around them, I'm not. I don't plan many important things in advance so I am hoping that if I do end up having to mention this to him, he takes it the right way and schedules my armpit in accordingly...
However as it turns out, seems he still wishes to retain a foothold in my life as he subsequently sent me a letter giving me an appointment for November. Hmmm, mind games, eh?
I also totally accidentally hit on a fabulous reverse psychology tactic. Now I am telling you this in confidence and don't just use it willy nilly on every Consultant you may meet. It may turn out to be overkill, or inappropriate to the situation and it won't always work. It is like the bazooka of tactics.
What happened was, he casually asked me whether we had talked about removal of ovaries. I said no we hadn't but that I did want it done. Along with removal of womb and anything else remotely connected with the devil tumour driver, oestrogen. I then very politely said "but of course I'm not sure if I fit the criteria for that". Well. He scoffed at the mere mention of criteria and came over all powerful and impressive and "if I say it shall be done, then it shall be done". So fingers crossed the bank of daddy won't have to end up funding that after all.
We're waiting for the results of my genetic testing first before we talk more about that.
So what else has been occurring apart from my doctor sacking me?
Went for pre chemo blood test yesterday. Noticed today that the nurse has the honour of being the first one ever to bruise the skin over my port. No idea how that happened. Thought that only occurred when looking for a vein.
Fifth chemo tomorrow. On a steroid hyper today after taking the 16mg dexamethasone pre-drug (like pre-drinks but not nearly as fun).
Have also had A COUGH. With all the drama about possible neutropenic sepsis - where you get an infection whilst white blood cells are low - I had kind of forgotten that not every single viral illness will require hospital admission. Have been checking my temperature and keeping an eye on things and we will see whether it goes away on its own.
Finally, I am being referred back to my breast surgeon who wants to hack away at my armpit next. Oncologist said this surgery could not take place until late October once my white blood cells replenish after final chemo. I am now very worried that my surgeon might just book me in before I have had a chance to tell him it needs to be after my birthday drinks on 2nd November. I'm sure he will see me to get a Consent Form signed (at least, I don't remember signing one for this yet!!) and I can sound him out about a date then. Now before you write me off as the sort of pleb who thinks the NHS schedule revolves around them, I'm not. I don't plan many important things in advance so I am hoping that if I do end up having to mention this to him, he takes it the right way and schedules my armpit in accordingly...
Sunday 1 September 2013
Swingball and socialising
Well, it definitely wasn't a placebo. Up until Wednesday I was still waiting for the worst of it to hit. I told a friend on Wednesday morning that although this drug had not produced the hellish nausea and fuzzy head of FEC, I had my suspicions that it was working under the surface on a further "darker" set of side effects.
I was right. By Wednesday tea time I had the most horrendous heartburn ever. My chest felt so odd that I seriously started to wonder whether I was in fact getting some sort of dreaded infection instead.
Then the predicted joint aches kicked in. Bit like someone insistently and frequently prodding you from inside your various limbs. Paracetamol sorted that to an extent and thankfully also dulled the heartburn although clearly one cannot simply continue taking painkillers for indigestion!
My temperature was not rising and I didn't feel feverish so I hoped it was just side effects rather than illness. Rang the ward first thing on Thursday for advice and they were great, said it sounded like indigestion to them too and suggested I ring my GP who could prescribe something.
I didn't ring that day as I wasn't sure whether I would have to go to the surgery and I didn't fancy doing that with two kids in tow. The joint aches continued and I felt justified in sampling my Co-Codamol that evening. Effective stuff.
The heartburn started to improve but I still rang the GP on Friday who was fab and prescribed (new and complicated name coming up) Omeprazole. I didn't even have to go in and see him, brilliant service. He told me that I was never going to get anywhere taking the likes of Gaviscon for this and the drug he has prescribed is an actual acid suppressant so it stops or reduces the production of acid rather than trying to deal with it once is is already there and causing a problem.
Mentioned to my mother in law about this and she said I must get some peppermints in. Yeah, and a bloody voodoo doll to go with it, that will be equally effective. She doesn't believe in pill popping. The Daily Mail says it will kill you, apparently. Not sure of her stance on chemotherapy... #door #horse #bolted #dailyfail
I felt ok on Saturday and went to a lovely BBQ party for my sister's birthday. Was still tired out this morning after all the socialising. A dear longstanding chum whose friendship goes back to our playschool days together was down visiting and popped round for a cuppa and a nice catch up this morning. Then me, Dan and the kids had a chilled afternoon in the garden.
I finally persuaded Dan to erect the Swingball (ooerrrr missus) on his precious lawn and showed him a snapshot of my formidable skills in that department.
Also started showing Abbie how to do it and she was really quite good at hitting it once Daddy stopped insisting she hold the bat in her right hand when she is clearly a leftie. Had many hours of Swingball practice as a young girl wearing out my dad's lawn at home before finally being banished to play it in the field at the bottom of our drive instead. And yes, I played it for ages on my own, I was an oddball loner.
It's actually a brilliant stress reliever. Think I may well take it up again now. Or just use the bat to fly swat anyone who annoys me, instead...?
I was right. By Wednesday tea time I had the most horrendous heartburn ever. My chest felt so odd that I seriously started to wonder whether I was in fact getting some sort of dreaded infection instead.
Then the predicted joint aches kicked in. Bit like someone insistently and frequently prodding you from inside your various limbs. Paracetamol sorted that to an extent and thankfully also dulled the heartburn although clearly one cannot simply continue taking painkillers for indigestion!
My temperature was not rising and I didn't feel feverish so I hoped it was just side effects rather than illness. Rang the ward first thing on Thursday for advice and they were great, said it sounded like indigestion to them too and suggested I ring my GP who could prescribe something.
I didn't ring that day as I wasn't sure whether I would have to go to the surgery and I didn't fancy doing that with two kids in tow. The joint aches continued and I felt justified in sampling my Co-Codamol that evening. Effective stuff.
The heartburn started to improve but I still rang the GP on Friday who was fab and prescribed (new and complicated name coming up) Omeprazole. I didn't even have to go in and see him, brilliant service. He told me that I was never going to get anywhere taking the likes of Gaviscon for this and the drug he has prescribed is an actual acid suppressant so it stops or reduces the production of acid rather than trying to deal with it once is is already there and causing a problem.
Mentioned to my mother in law about this and she said I must get some peppermints in. Yeah, and a bloody voodoo doll to go with it, that will be equally effective. She doesn't believe in pill popping. The Daily Mail says it will kill you, apparently. Not sure of her stance on chemotherapy... #door #horse #bolted #dailyfail
I felt ok on Saturday and went to a lovely BBQ party for my sister's birthday. Was still tired out this morning after all the socialising. A dear longstanding chum whose friendship goes back to our playschool days together was down visiting and popped round for a cuppa and a nice catch up this morning. Then me, Dan and the kids had a chilled afternoon in the garden.
I finally persuaded Dan to erect the Swingball (ooerrrr missus) on his precious lawn and showed him a snapshot of my formidable skills in that department.
Also started showing Abbie how to do it and she was really quite good at hitting it once Daddy stopped insisting she hold the bat in her right hand when she is clearly a leftie. Had many hours of Swingball practice as a young girl wearing out my dad's lawn at home before finally being banished to play it in the field at the bottom of our drive instead. And yes, I played it for ages on my own, I was an oddball loner.
It's actually a brilliant stress reliever. Think I may well take it up again now. Or just use the bat to fly swat anyone who annoys me, instead...?
Wednesday 28 August 2013
Unwelcome Manouevres in the Dark
Couldn't get to sleep tonight then got hungry so came downstairs at 1am to get a sandwich.
Switched on one tiny kitchen light. Yes that's right, one light, in my own home that I jointly own - no law against it, one would think.
Well, one would be wrong. First of all Bleddy Cat starts creating a huge noisy fuss out in the conservatory. Creating huge noisy fusses indoors during the night is how she ended up banished to the conservatory in the first place. Some never learn.
Simultaneously the baby starts crashing and shuffling in her cot and can be clearly heard shouting "Hiya!" in her room in the dark more than once.
The pre schooler coughed a bit but then sensibly decided to go quiet again.
Almost two hours later I have had my snack and would quite like to try returning to bed now but am afraid to move in case any noise I make sets off the same chain of events again.
And you thought having cancer was all doom and gloom. It's like Piccadilly Circus on speed here!!!
Switched on one tiny kitchen light. Yes that's right, one light, in my own home that I jointly own - no law against it, one would think.
Well, one would be wrong. First of all Bleddy Cat starts creating a huge noisy fuss out in the conservatory. Creating huge noisy fusses indoors during the night is how she ended up banished to the conservatory in the first place. Some never learn.
Simultaneously the baby starts crashing and shuffling in her cot and can be clearly heard shouting "Hiya!" in her room in the dark more than once.
The pre schooler coughed a bit but then sensibly decided to go quiet again.
Almost two hours later I have had my snack and would quite like to try returning to bed now but am afraid to move in case any noise I make sets off the same chain of events again.
And you thought having cancer was all doom and gloom. It's like Piccadilly Circus on speed here!!!
Saturday 24 August 2013
Placebo
This is really weird. No nausea and no real side effects are happening yet at all.
Even checked with my friend's daughter (a nurse) earlier that I would definitely have had to sign something if I was volunteering for a possible random placebo trial. It's ok, she said I would know if I had.
I can only assume that it is the more than four times the normal dose of steroids that goes with this regime that is carrying me through so far. Anything that reduces the number of days of usual crappy first week side effects is good with me.
Had post chemo injection at hospital today. Nurse asked me again if I'd like to learn to do it myself. Said no again.
Stayed at my friend's last night while mum had the kids. It was lovely, so relaxing. Being at home with the kids is good but it can feel a lot like an unrelenting relay race sometimes. No sooner have you come out the shower, you can hear your other half hovering anxiously at the bottom of the stairs all the while you're getting dressed just poised for you to come down and "grab the baton" and start metaphorically sprinting around the childcare arena again so that he can move on to the next thing he has in his list of tasks, and vice versa, and repeat...
I'm sure lots of people know that feeling, it's not exclusive to us. But I hope my current situation will inspire my family and me to examine how everyone's interests, plans and expectations can be balanced home here without sinking to the relay race effect. I'm no expert, this is no earth shaking revelation and I'm certainly not proficient in this technique in real life myself (YET...) but I think communication has to be the key.
Even checked with my friend's daughter (a nurse) earlier that I would definitely have had to sign something if I was volunteering for a possible random placebo trial. It's ok, she said I would know if I had.
I can only assume that it is the more than four times the normal dose of steroids that goes with this regime that is carrying me through so far. Anything that reduces the number of days of usual crappy first week side effects is good with me.
Had post chemo injection at hospital today. Nurse asked me again if I'd like to learn to do it myself. Said no again.
Stayed at my friend's last night while mum had the kids. It was lovely, so relaxing. Being at home with the kids is good but it can feel a lot like an unrelenting relay race sometimes. No sooner have you come out the shower, you can hear your other half hovering anxiously at the bottom of the stairs all the while you're getting dressed just poised for you to come down and "grab the baton" and start metaphorically sprinting around the childcare arena again so that he can move on to the next thing he has in his list of tasks, and vice versa, and repeat...
I'm sure lots of people know that feeling, it's not exclusive to us. But I hope my current situation will inspire my family and me to examine how everyone's interests, plans and expectations can be balanced home here without sinking to the relay race effect. I'm no expert, this is no earth shaking revelation and I'm certainly not proficient in this technique in real life myself (YET...) but I think communication has to be the key.
Friday 23 August 2013
Survived Fourth Chemo
Went to hospital for fourth Chemo today. Got the needle and line plumbed in then the nurse gave me ondansetron (anti sickness) then piriton which added to the steroids is supposed to further prevent allergic reaction.
She told me that the usual dose of Piriton from the chemist was 4mg and that they warn it may make you drowsy. She was about to stick me with 10mg direct in to the vena cava via the jugular vein, so she had some concerns about me possibly driving afterwards.
Luckily my sister had already decided that morning that she would chaffeur me given that we didn't know what the new drugs would be like. So she was right.
The nurse also warned that I might fall asleep. I was determined that this would not happen on my first occasion of being left on my own in the public chair section of the Unit! I have never been able to sleep upright in chairs anyway.
The nurse starts the Docetaxel drip and I have my first go at wheeling the drip stand affair across the room. It was easier than I thought. I was set up in my reclining chair and started watching the machine count down the hour it would take for the bag to drip through. Got bored of that with 53 minutes still left so Helen took the opportunity to take complete advantage of my drugged up state by beating me at Monopoly for the first time in her life.
I didn't even know when it was my go. I might not even have had all my goes. I demand a re-match.
Of course one would think that the steroids might have helped with this, however I have established something else about them. Upon asking the nurse why I still didn't feel like training hard at the gym or doing excessive athletics she reminded me that there were different types of steroids and I then recalled that the steroids I am on are corticosteroids whereas the ones the naughty athletes (allegedly) take are anabolic steroids. So I want a refund on my ones now.
Anyway back to important stuff, I didn't have a drastic allergic reaction and I am still here. The side effects have not kicked in yet. Whatever happens I have been glad to see the back of FEC as the effects of that were becoming cumulative. The nurse thinks that I should avoid sinus pain getting worse again this time as that is mainly a characteristic of FEC, so fingers crossed. I also found out that the joint pain if I get it may only last 72 hours, not the entire three week cycle as I feared. So it's all good, but who knows what will come later on this evening...!
She told me that the usual dose of Piriton from the chemist was 4mg and that they warn it may make you drowsy. She was about to stick me with 10mg direct in to the vena cava via the jugular vein, so she had some concerns about me possibly driving afterwards.
Luckily my sister had already decided that morning that she would chaffeur me given that we didn't know what the new drugs would be like. So she was right.
The nurse also warned that I might fall asleep. I was determined that this would not happen on my first occasion of being left on my own in the public chair section of the Unit! I have never been able to sleep upright in chairs anyway.
The nurse starts the Docetaxel drip and I have my first go at wheeling the drip stand affair across the room. It was easier than I thought. I was set up in my reclining chair and started watching the machine count down the hour it would take for the bag to drip through. Got bored of that with 53 minutes still left so Helen took the opportunity to take complete advantage of my drugged up state by beating me at Monopoly for the first time in her life.
I didn't even know when it was my go. I might not even have had all my goes. I demand a re-match.
Of course one would think that the steroids might have helped with this, however I have established something else about them. Upon asking the nurse why I still didn't feel like training hard at the gym or doing excessive athletics she reminded me that there were different types of steroids and I then recalled that the steroids I am on are corticosteroids whereas the ones the naughty athletes (allegedly) take are anabolic steroids. So I want a refund on my ones now.
Anyway back to important stuff, I didn't have a drastic allergic reaction and I am still here. The side effects have not kicked in yet. Whatever happens I have been glad to see the back of FEC as the effects of that were becoming cumulative. The nurse thinks that I should avoid sinus pain getting worse again this time as that is mainly a characteristic of FEC, so fingers crossed. I also found out that the joint pain if I get it may only last 72 hours, not the entire three week cycle as I feared. So it's all good, but who knows what will come later on this evening...!
Thursday 22 August 2013
Help on the [Oncology] checkouts, please!
Went to see the Oncologist last Friday. I go there every three weeks. I see a different person every time. The person I see gets younger every time. It's a bit like going to the co-op, really!
They've started to get a rather apprehensive look on their face recently too, that sort of "don't ask a complicated question" face. I have decided that this is because head honcho Oncology Consultant is off on his holidays at the moment and his staff know that if it came down to it, they don't really know what the answer to a complicated question will be. We've all got to learn somehow, though so can't hold that against them. I expect their boss deploys the line "it will be good experience for you", too.
The chap I saw was very nice. He prescribed me pre chemo steroids which are compulsory for the next drug I am starting. Then he said that along with all the other side effects I have already been at risk of, Docetaxel comes with a possibility of joint aches and pains. He asked me if I wanted him to prescribe Co-Codamol as well.
What annoying sarcastic me felt like saying was: "No mate, don't bother prescribing me pharmacy strength Co-Codamol which will be completely free of charge, I will wait and see what happens and then if the worst occurs I will go to the chemist and use my own money to pay for lesser strength over the counter stuff."
What actual timid don't-upset-anyone-or-they-will-spit-in-your-cytotoxic-drugs me replied was "Oh, yes please, thank you!".
Finally, access to the good stuff. I am now packing 60 Co-Codamol and I'm not afraid to use them.
Went to hospital for the pre chemo blood test on Wednesday. Nurse complimented me again on my port - it's a "beauty" apparently.
Had some time to kill before that appointment so I went up to the Breast Care Unit to chase up some other dates I'd been waiting for. Luckily the reception area was not too busy for other patients' sake as I had forgotten the effect that seeing an obvious cancer patient with a headscarf swanning in has upon the poor ladies waiting for their routine mammograms! Of course I wouldn't know as I've never been in the situation of being called in for a routine mammogram. All my BCU appointments have been accompanied by a vague sense of dread. Looks of trepidation all round in reception - oops.
So first Docetaxel tomorrow. My sister is bringing me a Maccy D's brekkie to eat when I take my mental dose of steroids beforehand.
They've started to get a rather apprehensive look on their face recently too, that sort of "don't ask a complicated question" face. I have decided that this is because head honcho Oncology Consultant is off on his holidays at the moment and his staff know that if it came down to it, they don't really know what the answer to a complicated question will be. We've all got to learn somehow, though so can't hold that against them. I expect their boss deploys the line "it will be good experience for you", too.
The chap I saw was very nice. He prescribed me pre chemo steroids which are compulsory for the next drug I am starting. Then he said that along with all the other side effects I have already been at risk of, Docetaxel comes with a possibility of joint aches and pains. He asked me if I wanted him to prescribe Co-Codamol as well.
What annoying sarcastic me felt like saying was: "No mate, don't bother prescribing me pharmacy strength Co-Codamol which will be completely free of charge, I will wait and see what happens and then if the worst occurs I will go to the chemist and use my own money to pay for lesser strength over the counter stuff."
What actual timid don't-upset-anyone-or-they-will-spit-in-your-cytotoxic-drugs me replied was "Oh, yes please, thank you!".
Finally, access to the good stuff. I am now packing 60 Co-Codamol and I'm not afraid to use them.
Went to hospital for the pre chemo blood test on Wednesday. Nurse complimented me again on my port - it's a "beauty" apparently.
Had some time to kill before that appointment so I went up to the Breast Care Unit to chase up some other dates I'd been waiting for. Luckily the reception area was not too busy for other patients' sake as I had forgotten the effect that seeing an obvious cancer patient with a headscarf swanning in has upon the poor ladies waiting for their routine mammograms! Of course I wouldn't know as I've never been in the situation of being called in for a routine mammogram. All my BCU appointments have been accompanied by a vague sense of dread. Looks of trepidation all round in reception - oops.
So first Docetaxel tomorrow. My sister is bringing me a Maccy D's brekkie to eat when I take my mental dose of steroids beforehand.
Friday 9 August 2013
Assets
The seemingly never ending nausea is finally starting to dissipate now. I still have annoying sinus pain, if anyone is interested...
Quite glad to be seeing the back of FEC after three cycles given that the side effects have been worsening and going on longer each time.
Next time we move on to Docetaxel. Sounds like "docile", so benign and welcoming (??!). I'm sure it absolutely isn't, but at least I can hold out the hope that sinus pain will not be one of its pet side effects.
One of the components of FEC gave me a head freeze as soon as the nurse put it in me so fingers crossed it is that one causing the sinus business and that this side effect might therefore now eliminate itself.
Putting that to one side and moving on to the next set of concerns, then. The first is that I might die of an allergic reaction to Docetaxel. Now I didn't really think about this with FEC. I think what has set me off on this thought path is the fact that they make you take steroids before you even have the Docetaxel and I think this is to try and minimise the possibility of a reaction.
I can't change the prescribed drug though and I wouldn't want to because that is the course of treatment that has been chosen for me for a reason, so insert text of Serenity Prayer here, and let's move on.
The second is the internal debate of whether to bother painting my nails a dark colour. Now I don't usually do this as a) it stains the nails and b) if they have nail varnish on for too long it affects their condition. But there is a school of thought that suggests that the effects that Docetaxel can have on one's nails are caused by UV light and that if you can stop the light from getting to them by painting them dark then they are less likely to be affected. But would I want to risk covering my nails in polish for some two months, stopping the air from getting to them and having them deteriorate anyway as a result of doing that?
Strange that I am putting more thought in to this nail business than I did about the hair situation. Actually not that strange, given that my hair was massively unimpressive whereas my natural nails are f**king fabulous, even though I do say so myself. I had a manicure in one of those really busy places staffed by Chinese people and even one of the girls there said it wasn't often that they see natural nails like mine. Praise indeed.
So I am now facing the risk of losing one of my major assets. What to do, what to do?
#cancerdilemmasofthemoderngirl
Quite glad to be seeing the back of FEC after three cycles given that the side effects have been worsening and going on longer each time.
Next time we move on to Docetaxel. Sounds like "docile", so benign and welcoming (??!). I'm sure it absolutely isn't, but at least I can hold out the hope that sinus pain will not be one of its pet side effects.
One of the components of FEC gave me a head freeze as soon as the nurse put it in me so fingers crossed it is that one causing the sinus business and that this side effect might therefore now eliminate itself.
Putting that to one side and moving on to the next set of concerns, then. The first is that I might die of an allergic reaction to Docetaxel. Now I didn't really think about this with FEC. I think what has set me off on this thought path is the fact that they make you take steroids before you even have the Docetaxel and I think this is to try and minimise the possibility of a reaction.
I can't change the prescribed drug though and I wouldn't want to because that is the course of treatment that has been chosen for me for a reason, so insert text of Serenity Prayer here, and let's move on.
The second is the internal debate of whether to bother painting my nails a dark colour. Now I don't usually do this as a) it stains the nails and b) if they have nail varnish on for too long it affects their condition. But there is a school of thought that suggests that the effects that Docetaxel can have on one's nails are caused by UV light and that if you can stop the light from getting to them by painting them dark then they are less likely to be affected. But would I want to risk covering my nails in polish for some two months, stopping the air from getting to them and having them deteriorate anyway as a result of doing that?
Strange that I am putting more thought in to this nail business than I did about the hair situation. Actually not that strange, given that my hair was massively unimpressive whereas my natural nails are f**king fabulous, even though I do say so myself. I had a manicure in one of those really busy places staffed by Chinese people and even one of the girls there said it wasn't often that they see natural nails like mine. Praise indeed.
So I am now facing the risk of losing one of my major assets. What to do, what to do?
#cancerdilemmasofthemoderngirl
Sunday 4 August 2013
Blog updates ad nauseam? Excuse the pun...
This blog entry is for my brother-in-law who came to visit from London this weekend with several of his friends, all of whom were lovely chaps.
He asked me if I was going to put up another blog update. Now, I haven't had any hospital appointments today and I haven't got any planned until 16th August.
Given that my blog kind of revolves around these exciting hospital trips out, I'm not entirely sure what to write about.
Today I was awake at 7 ish when the kids got up. Mulled over the usual dilemmas and questions about life -
1. Am I drinking enough fluids?
2. Shall I bother taking the steroids today?
3. When will my skin stop smelling of chemo chemicals? This is not quite as bad as the rusty-gate-excessive-iron smell but I can still notice it.
4. Is it actually the steroids making me feel sick, or the sheer amount of fluid I am expected to force in to my body. 2 to 3 litres a day, WTF?
Dan and me pottered around and fielded kids' requests until 11.30 then I thought I'd better have a bath. Had the bath then required a lie down afterwards before actually getting dressed.
Low level but irritating nausea ongoing throughout the above described processes.
Had a wobble about going out to the restaurant this afternoon but felt better after getting dressed. Took the kids to my mum's (thanks mum) and then proceeded to collect the outlaws and drive on to the restaurant where we met up with my brother in law and his friends.
Really glad I went as I managed to drink a pint of orange juice and lemonade plus a coffee, thus staving off the "fluid intake guilt" for a while. Also ate a massive carvery. Remember, this nausea is like a hangover, it needs to be fed.
Listened to the MIL's stories about knowing Mick Jagger in her schooldays before he was famous and how she would love to go up to him and remind him about it if she ever saw him now. Made obligatory joke about Injunctions being available for that sort of conduct.
But the best bit was discovering that one of my brother in law's visiting friends had a small part in the film Snatch. He played a pikey and he showed us all a promo picture of himself stood next to Brad Pitt!
The other thing that happened was my dear husband telling me last night that he still loves me even though I am "faulty". I'm actually rather flattered - I always knew he was a "keeper".
He asked me if I was going to put up another blog update. Now, I haven't had any hospital appointments today and I haven't got any planned until 16th August.
Given that my blog kind of revolves around these exciting hospital trips out, I'm not entirely sure what to write about.
Today I was awake at 7 ish when the kids got up. Mulled over the usual dilemmas and questions about life -
1. Am I drinking enough fluids?
2. Shall I bother taking the steroids today?
3. When will my skin stop smelling of chemo chemicals? This is not quite as bad as the rusty-gate-excessive-iron smell but I can still notice it.
4. Is it actually the steroids making me feel sick, or the sheer amount of fluid I am expected to force in to my body. 2 to 3 litres a day, WTF?
Dan and me pottered around and fielded kids' requests until 11.30 then I thought I'd better have a bath. Had the bath then required a lie down afterwards before actually getting dressed.
Low level but irritating nausea ongoing throughout the above described processes.
Had a wobble about going out to the restaurant this afternoon but felt better after getting dressed. Took the kids to my mum's (thanks mum) and then proceeded to collect the outlaws and drive on to the restaurant where we met up with my brother in law and his friends.
Really glad I went as I managed to drink a pint of orange juice and lemonade plus a coffee, thus staving off the "fluid intake guilt" for a while. Also ate a massive carvery. Remember, this nausea is like a hangover, it needs to be fed.
Listened to the MIL's stories about knowing Mick Jagger in her schooldays before he was famous and how she would love to go up to him and remind him about it if she ever saw him now. Made obligatory joke about Injunctions being available for that sort of conduct.
But the best bit was discovering that one of my brother in law's visiting friends had a small part in the film Snatch. He played a pikey and he showed us all a promo picture of himself stood next to Brad Pitt!
The other thing that happened was my dear husband telling me last night that he still loves me even though I am "faulty". I'm actually rather flattered - I always knew he was a "keeper".
Saturday 3 August 2013
Holiday Embargo
Getting kind of bored of not being able to plan anything now. I thought it was difficult before with our house extension project dominating every weekend but cancer is a completely different ball game.
I hope to finish my chemo in early October and then be over the side effects by the end of that month. Book a holiday after that, one would think. However, getting an infection between now and then could mean that the schedule slides completely so that can't be relied upon.
Once chemo is finished I will be packed off back to the Breast Care Unit to get a date for my next surgery. Following that there will be another prolonged period of no lifting. Book a holiday during my recovery period? Yes but that would hardly represent any sort of holiday for my husband then unless a nanny was also supplied for tantrum calming and general junk hauling purposes.
Once I have recovered acceptably from surgery I will boomerang back to Oncology for radiotherapy treatment. I imagine that goes on for several weeks. Every day.
Add to that the wait for my genetic testing results plus probable further surgery to remove unnecessary and redundant reproductive organs (my personal plan, hopefully to be sanctioned by the NHS but will go ahead privately if not, only question being when to fit this in...) and I don't see anything except a very short very last minute holiday being a realistic prospect until next year!
Anyway, enough moaning about that, I am supposed to be moaning about the side effects from yesterday's chemo. Nausea, nausea and more nausea. In two minds whether to take the steroid dose with my breakfast today or not. I've been awake since 4.30am so I've had ample time to mull this over. No decision as yet.
Trundling off to the hospital at 3.00 today for my G-CSF injection. Seems to be working well each time so far, touch wood, or maybe I have just been lucky enough not to contract any infections in the first place. Asked about my blood results yesterday - all fine, just slightly "anaemic". I caught a glimpse of the figures and my hb (haemoglobin??) levels were 10 ish. That is normal for me! I think I do simply exist in a constant state of mild anaemia.
Told the nurse my hilarious anecdote of the midwives panicking about this during my first pregnancy and putting me on to iron supplements. Well that lasted five days before I abandoned it completely once my body emphatically confirmed that extra iron was not required thank you very much and started to process and excrete the excess levels out through my skin, giving me and my clothes the very unpleasant smell of a rusty iron gate. One of my dry clean only suit jackets never recovered from this.
I hope to finish my chemo in early October and then be over the side effects by the end of that month. Book a holiday after that, one would think. However, getting an infection between now and then could mean that the schedule slides completely so that can't be relied upon.
Once chemo is finished I will be packed off back to the Breast Care Unit to get a date for my next surgery. Following that there will be another prolonged period of no lifting. Book a holiday during my recovery period? Yes but that would hardly represent any sort of holiday for my husband then unless a nanny was also supplied for tantrum calming and general junk hauling purposes.
Once I have recovered acceptably from surgery I will boomerang back to Oncology for radiotherapy treatment. I imagine that goes on for several weeks. Every day.
Add to that the wait for my genetic testing results plus probable further surgery to remove unnecessary and redundant reproductive organs (my personal plan, hopefully to be sanctioned by the NHS but will go ahead privately if not, only question being when to fit this in...) and I don't see anything except a very short very last minute holiday being a realistic prospect until next year!
Anyway, enough moaning about that, I am supposed to be moaning about the side effects from yesterday's chemo. Nausea, nausea and more nausea. In two minds whether to take the steroid dose with my breakfast today or not. I've been awake since 4.30am so I've had ample time to mull this over. No decision as yet.
Trundling off to the hospital at 3.00 today for my G-CSF injection. Seems to be working well each time so far, touch wood, or maybe I have just been lucky enough not to contract any infections in the first place. Asked about my blood results yesterday - all fine, just slightly "anaemic". I caught a glimpse of the figures and my hb (haemoglobin??) levels were 10 ish. That is normal for me! I think I do simply exist in a constant state of mild anaemia.
Told the nurse my hilarious anecdote of the midwives panicking about this during my first pregnancy and putting me on to iron supplements. Well that lasted five days before I abandoned it completely once my body emphatically confirmed that extra iron was not required thank you very much and started to process and excrete the excess levels out through my skin, giving me and my clothes the very unpleasant smell of a rusty iron gate. One of my dry clean only suit jackets never recovered from this.
Thursday 1 August 2013
Blood letting and bonding
Went to the hospital for pre chemo bloods yesterday. Met a very personable nurse.
He got his little pillow out as he had obviously noticed that I had no PICC line in my arm. I didn't catch on to what he was doing at first but when I realised I was like "oh, no need for that, I have a port!". Whipped my top off quicker than a page 3 model - it's okay, I had a vest top on underneath too, didn't want to traumatise the poor chap at our first meeting.
He "accessed the port" (cue Star Trek theme toon again) and commented that they'd got a good vein there, presumably meaning one that blood actually freely flows from as opposed to the ones in my arms which have been so ineffective in the past they might as well not be there. Heard about a lady recently whose port became blocked. Now petrified that might happen to me one day and they might have to take it out and use alternative methods. Please don't let me be that unlucky. It's all character building, it's all character building, repeat ad infinitum...
Then we had a good old chat about what I do for a living, my fear of needles, his own personal big fear of having actual surgery, how brave he thinks cancer patients are - we really made the most of our actually quite short appointment!
When I was leaving he said it was nice to have met me. Fluffiness and feel good factor at the chemo unit, who'd have thunk it?!
He got his little pillow out as he had obviously noticed that I had no PICC line in my arm. I didn't catch on to what he was doing at first but when I realised I was like "oh, no need for that, I have a port!". Whipped my top off quicker than a page 3 model - it's okay, I had a vest top on underneath too, didn't want to traumatise the poor chap at our first meeting.
He "accessed the port" (cue Star Trek theme toon again) and commented that they'd got a good vein there, presumably meaning one that blood actually freely flows from as opposed to the ones in my arms which have been so ineffective in the past they might as well not be there. Heard about a lady recently whose port became blocked. Now petrified that might happen to me one day and they might have to take it out and use alternative methods. Please don't let me be that unlucky. It's all character building, it's all character building, repeat ad infinitum...
Then we had a good old chat about what I do for a living, my fear of needles, his own personal big fear of having actual surgery, how brave he thinks cancer patients are - we really made the most of our actually quite short appointment!
When I was leaving he said it was nice to have met me. Fluffiness and feel good factor at the chemo unit, who'd have thunk it?!
Tuesday 30 July 2013
Patient FAIL
Went to see the Oncologist on Friday. Very eventful consultation...not.
The Consultant had dispatched his deputy to see me, probably because I didn't have anything momentous to report the time before and guess what? I had more of the same this time too.
Her: How was the last cycle?
Me: Um, same as the one before really.
Her: Any side effects?
There followed a brief and boring discussion about how I suspected the steroids were making me feel worse rather than better and she confirmed I didn't have to take them the third time if I didn't want to.
Her: So, do you have anything else to say?
Me: Erm, no. (Wondering whether I ought to remind her that it was her department that generated the appointment, not me...)
Her: (Clearly wishing to add some drama and excitement to an otherwise boring consultation) Well, after this third chemo you will move on to Docetaxel. That is the strongest chemotherapy drug we use here so you will need to take steroids then and the side effects could be completely different! (Beams)
Me: Erm, ok, erm, thanks. I think I'll go now then.
Went to reception to book in for three weeks later as advised. Discover they don't have any appointments.
I was subsequently sent an appointment in the post, I imagine they feel pretty confident in overbooking these appointments if lots of them are as straightforward as mine seem to have been so far. I feel like a very uninteresting patient. My surgeon found me very novel and interesting but from an Oncology point of view I am one of those patients where nobody is going to remember your name.
Next time I'm going to ask for a full run through of my blood results, just to bring something to the table.
Yesterday I had a follow up telephone consultation with a very nice Breast Care Nurse. You may well wonder what a Breast Care Nurse would want with me nowadays. Well she had lots of options to offer me. I agreed to Lymphodema workshop - don't need it now but might need it after my next surgery later this year; Moving On Group - we're leaving that one until January; Prosthesis and bra fitting - they're sending me an appointment; Reconstruction - available on demand, apparently - shelved indefinitely; and finally, Breast Cancer Yoga Group - needless to say, I signed up for that straight away as my friends will all know how much I adore joining things and meeting new people...
The Consultant had dispatched his deputy to see me, probably because I didn't have anything momentous to report the time before and guess what? I had more of the same this time too.
Her: How was the last cycle?
Me: Um, same as the one before really.
Her: Any side effects?
There followed a brief and boring discussion about how I suspected the steroids were making me feel worse rather than better and she confirmed I didn't have to take them the third time if I didn't want to.
Her: So, do you have anything else to say?
Me: Erm, no. (Wondering whether I ought to remind her that it was her department that generated the appointment, not me...)
Her: (Clearly wishing to add some drama and excitement to an otherwise boring consultation) Well, after this third chemo you will move on to Docetaxel. That is the strongest chemotherapy drug we use here so you will need to take steroids then and the side effects could be completely different! (Beams)
Me: Erm, ok, erm, thanks. I think I'll go now then.
Went to reception to book in for three weeks later as advised. Discover they don't have any appointments.
I was subsequently sent an appointment in the post, I imagine they feel pretty confident in overbooking these appointments if lots of them are as straightforward as mine seem to have been so far. I feel like a very uninteresting patient. My surgeon found me very novel and interesting but from an Oncology point of view I am one of those patients where nobody is going to remember your name.
Next time I'm going to ask for a full run through of my blood results, just to bring something to the table.
Yesterday I had a follow up telephone consultation with a very nice Breast Care Nurse. You may well wonder what a Breast Care Nurse would want with me nowadays. Well she had lots of options to offer me. I agreed to Lymphodema workshop - don't need it now but might need it after my next surgery later this year; Moving On Group - we're leaving that one until January; Prosthesis and bra fitting - they're sending me an appointment; Reconstruction - available on demand, apparently - shelved indefinitely; and finally, Breast Cancer Yoga Group - needless to say, I signed up for that straight away as my friends will all know how much I adore joining things and meeting new people...
Tuesday 23 July 2013
Our version of normality
Haven't posted about any hospital appointments for a while as I haven't had any, yippee! However, this does not mean that my life has been meaningless. Quite the contrary.
Highlights of the past few days have been as follows:
Friday - Morning hospital appointment then Dan and I took Abbie to Babbacombe. What should have happened was that Abbie would play on the Downs with a football (which, sadly, we had not brought) before having a relaxed lunch.
What actually happened was that I stupidly suggested we go down to the beach. 415 steps later we get down there and Abbie has a meltdown. It was too pebbly, apparently. So we start back up the hill. I get part way up and realise I have massively overestimated my current level of stamina. Dan carries Abbie up the rest of the hill, gets the car and picks me up.
Now, during the course of Abbie's meltdown I had threatened not to take her for lunch. Never do that. It always results in self sabotage. On the way back up the hill in the car I re-negotiate the punishment (taking away the iPad for rest of day instead) and we finally all go to Hanbury's and have scrumptious fish and chips in relative peace and harmony.
Get home and realise despite best intentions we have totally forgotten to go to The Willows - or, indeed, any appropriate shop - to buy my mum's chap a birthday present. Gah.
Saturday - I stayed at my friend's house on Friday night. Went for breakfast on Saturday morning. Went in a few shops but then I started to feel dizzy and wanted to go home. I don't like shopping. Almost in the car and home free when my mobile rings. Cue my friend and I taking a detour via B&Q to acquire essential building materials, specifically 6 bags of decorative stone. Waited around for various members of staff to assist us with getting these huge bags in to the car boot, dropped my friend home then drove the car home on two wheels and proudly presented my husband with the elusive stones.
All was not calm on the home front. The render was going off as fast as they could mix it up and Dan later confessed to having had a bit of a "Basil Fawlty" moment that morning. A shovel had been thrown across our cul de sac.
Once the building works were done for the day we had a nice chilled afternoon and Abbie featured in her first ever Chudleigh Carnival that evening, dressed as an owl.
Sunday - We all spent a lovely day at home eating loads of food and playing in our new garden.
Monday - the kids went to nursery and I spent a WHOLE DAY working! Received further work which had been sent home from the office and realised that my boss was generously letting me have a go at all the files that had to date been languishing in the cabinet drawer labelled "headaches". I think you'll find that most lawyers have one, I certainly do. Some lawyers have several such drawers, but don't realise it. Those individuals are one of the most dangerous species of lawyer.
The partner who trained me always used to preface the handing over of such a file with "It will be good experience for you". Yes. Those files.
Working at home I am a captive audience for these files and I have thrown myself in to it.
Tuesday - Today was the best day EVER. I collected my new laundry hamper from Dunelm Mill (irrationally excited about that) and had McDonalds for lunch. Need I say more...?
Highlights of the past few days have been as follows:
Friday - Morning hospital appointment then Dan and I took Abbie to Babbacombe. What should have happened was that Abbie would play on the Downs with a football (which, sadly, we had not brought) before having a relaxed lunch.
What actually happened was that I stupidly suggested we go down to the beach. 415 steps later we get down there and Abbie has a meltdown. It was too pebbly, apparently. So we start back up the hill. I get part way up and realise I have massively overestimated my current level of stamina. Dan carries Abbie up the rest of the hill, gets the car and picks me up.
Now, during the course of Abbie's meltdown I had threatened not to take her for lunch. Never do that. It always results in self sabotage. On the way back up the hill in the car I re-negotiate the punishment (taking away the iPad for rest of day instead) and we finally all go to Hanbury's and have scrumptious fish and chips in relative peace and harmony.
Get home and realise despite best intentions we have totally forgotten to go to The Willows - or, indeed, any appropriate shop - to buy my mum's chap a birthday present. Gah.
Saturday - I stayed at my friend's house on Friday night. Went for breakfast on Saturday morning. Went in a few shops but then I started to feel dizzy and wanted to go home. I don't like shopping. Almost in the car and home free when my mobile rings. Cue my friend and I taking a detour via B&Q to acquire essential building materials, specifically 6 bags of decorative stone. Waited around for various members of staff to assist us with getting these huge bags in to the car boot, dropped my friend home then drove the car home on two wheels and proudly presented my husband with the elusive stones.
All was not calm on the home front. The render was going off as fast as they could mix it up and Dan later confessed to having had a bit of a "Basil Fawlty" moment that morning. A shovel had been thrown across our cul de sac.
Once the building works were done for the day we had a nice chilled afternoon and Abbie featured in her first ever Chudleigh Carnival that evening, dressed as an owl.
Sunday - We all spent a lovely day at home eating loads of food and playing in our new garden.
Monday - the kids went to nursery and I spent a WHOLE DAY working! Received further work which had been sent home from the office and realised that my boss was generously letting me have a go at all the files that had to date been languishing in the cabinet drawer labelled "headaches". I think you'll find that most lawyers have one, I certainly do. Some lawyers have several such drawers, but don't realise it. Those individuals are one of the most dangerous species of lawyer.
The partner who trained me always used to preface the handing over of such a file with "It will be good experience for you". Yes. Those files.
Working at home I am a captive audience for these files and I have thrown myself in to it.
Tuesday - Today was the best day EVER. I collected my new laundry hamper from Dunelm Mill (irrationally excited about that) and had McDonalds for lunch. Need I say more...?
Thursday 18 July 2013
Home working re-visited
I have made a breakthrough in home working. For anyone who is interested, here are the steps to take:
1. Moan repeatedly to long suffering family members about how you have deadlines but never get any quiet time to sit and work.
2. Scope out the entire house for an appropriate table. Clearly the kitchen table is no good as the KIDS are down there.
3. Identify suitable desk in three year old's bedroom. Clear off cuddly toys x 15.
4. Carry dining chair up stairs, lifting it entirely over one narrow stair gate and through another. Wonder briefly what one's surgeon would have to say about this sort of lifting. Decide that Lauren (1) is probably heavier than a chair and proceed anyway.
5. Carry laptop, files, dictation machine upstairs. Return downstairs for stapler, hole punch and pen.
6. Decide to have a look in the computer cupboard for pencil case too. Find pencil case and have a nostalgic episode about all the pens that are in there.
7. With everything all set up at the desk, decide that it is absolutely crucial to go back downstairs and make a cup of tea. Attempt to do so. Get sent back upstairs by my dad.
Seriously, it's just like revising for A-Levels all over again!!
1. Moan repeatedly to long suffering family members about how you have deadlines but never get any quiet time to sit and work.
2. Scope out the entire house for an appropriate table. Clearly the kitchen table is no good as the KIDS are down there.
3. Identify suitable desk in three year old's bedroom. Clear off cuddly toys x 15.
4. Carry dining chair up stairs, lifting it entirely over one narrow stair gate and through another. Wonder briefly what one's surgeon would have to say about this sort of lifting. Decide that Lauren (1) is probably heavier than a chair and proceed anyway.
5. Carry laptop, files, dictation machine upstairs. Return downstairs for stapler, hole punch and pen.
6. Decide to have a look in the computer cupboard for pencil case too. Find pencil case and have a nostalgic episode about all the pens that are in there.
7. With everything all set up at the desk, decide that it is absolutely crucial to go back downstairs and make a cup of tea. Attempt to do so. Get sent back upstairs by my dad.
Seriously, it's just like revising for A-Levels all over again!!
Monday 15 July 2013
Chemo drag
Feeling nauseous, tired and fed up these last few days since having chemo. This side effect seems to be lasting longer than last time but I am still hopeful that it will pass soon like it did before.
Time seems to fly past in the days without really much being accomplished. This experience has made me aware that I am the most irresponsible homeworker ever. Sorry about that, work. I got some done and I will try again tomorrow. I did manage to get the computer on and set up and even managed to refill the ink in the printer. Never have to do that myself at the office. Realising I quite liked it at the office, actually. But not when feeling ill and at risk of catching whatever illness is going around there at any particular time.
Abbie is still on her little holiday, coming back tomorrow in time for her pre school. Lauren doesn't seem to have noticed she's not here - she's too busy bulldozing her way around the house and stealing food from the fridge!
Time seems to fly past in the days without really much being accomplished. This experience has made me aware that I am the most irresponsible homeworker ever. Sorry about that, work. I got some done and I will try again tomorrow. I did manage to get the computer on and set up and even managed to refill the ink in the printer. Never have to do that myself at the office. Realising I quite liked it at the office, actually. But not when feeling ill and at risk of catching whatever illness is going around there at any particular time.
Abbie is still on her little holiday, coming back tomorrow in time for her pre school. Lauren doesn't seem to have noticed she's not here - she's too busy bulldozing her way around the house and stealing food from the fridge!
Sunday 14 July 2013
Fake Hangover
Well second chemo has produced much the same as the first in terms of side effects. I would say you'll have switched off totally after 6 cycles of this sameness, but fear not as after one more cycle of FEC I move on to the "stronger" therefore scarier Taxotere for the last three cycles, which may bring with it a whole new host of unwelcome physical manifestations. So stay tuned!
For the past two days I have had what I call the fake hangover. All the symptoms of a hangover but cruelly without any of the drunken fun that usually precedes that feeling. Hungry but don't know what I want to eat; feel vaguely nauseous most of the time; fuzzy head; want to lie down but know that I can't as I have to get up, get ready and get Abbie's stuff packed as she is going on a two night holiday in her Grampy's motor home today.
Now I hate packing at the best of times, even for my own trips and holidays. So much to think about and remember, especially where kids' stuff is concerned. Think I will get the packing out of the way before I start getting ready myself.
The good thing about all this is that once the packing is done Abbie will be off on her holiday and Dan and I (well, Dan really...) can put together all her new garden toys on our recently-laid-and-just-cut-for-the-first-time turf, so, when Abbie returns on Tuesday she will have a lovely garden to play in. Then we are taking Lauren to see Abbie on her holiday - it's only in Brixham - just for the afternoon. Haven't broken this news to Abbie yet who seems to be looking forward to getting away and keeps trying to clarify that "Lauren isn't coming". Christ!
For the past two days I have had what I call the fake hangover. All the symptoms of a hangover but cruelly without any of the drunken fun that usually precedes that feeling. Hungry but don't know what I want to eat; feel vaguely nauseous most of the time; fuzzy head; want to lie down but know that I can't as I have to get up, get ready and get Abbie's stuff packed as she is going on a two night holiday in her Grampy's motor home today.
Now I hate packing at the best of times, even for my own trips and holidays. So much to think about and remember, especially where kids' stuff is concerned. Think I will get the packing out of the way before I start getting ready myself.
The good thing about all this is that once the packing is done Abbie will be off on her holiday and Dan and I (well, Dan really...) can put together all her new garden toys on our recently-laid-and-just-cut-for-the-first-time turf, so, when Abbie returns on Tuesday she will have a lovely garden to play in. Then we are taking Lauren to see Abbie on her holiday - it's only in Brixham - just for the afternoon. Haven't broken this news to Abbie yet who seems to be looking forward to getting away and keeps trying to clarify that "Lauren isn't coming". Christ!
Friday 12 July 2013
Second Chemo and other stories
Second chemo today. My sister kindly came with me. I was armed with numbing cream for the port site this time. Instructions were to put it on a dressing then stick the dressing down over the port half an hour or so before attending hospital.
All very well but when I stuck the dressing down - in the toilets at Occombe Farm, if you must know - the cream spread and started seeping out the side of the dressing. I didn't want a numb armpit too! Looks like I got one anyway, but happily there must still have been enough cream left in the correct place as I didn't even feel the "sharp scratch" (yeah, and the rest...) that the nurses always warn you about when sticking the needle in. That phrase "sharp scratch" appears to be a universal hospital euphemism for "I'm sticking a needle in you. Get real, of course it's going to hurt, but we'll pretend it won't by making you think it should only feel like a scratch therefore you are overreacting".
Except when you have numbing cream - tangible version of gas and air, very useful stuff.
Had a lovely nurse doing my chemo today. She had lived in Chudleigh until she moved a couple weeks ago so we all had lots of Chudleigh chat to talk about.
Managed to drive myself home after the chemo, the post-chemo lack of spatial awareness doesn't seem to affect driving although I have bashed in to a couple of doorways navigating around my home - on foot - since.
The other thing that has happened recently is that like a cat with its whiskers cut off, now I have no hair I have started repeatedly banging my head. For the past 3 years I have managed to operate the under stairs cupboard safely without ever hitting my head yet since having my head shaved I have smacked in to the door frame almost every time I've opened it! How embarrassing.
I have been wearing my wigs sometimes but they are a bit faffy so I have more often been wearing other types of headgear instead. The main drawback with wearing those is that when people see me in them I inevitably get what my Cancer Friend has hilariously termed the "Cancer Sadface". I'm sure you know it. Don't do it.
I am less subtle than my Cancer Friend - when a non blood relative who shall remain nameless came over to my house and started giving me that look, I dubbed it the "Dead Man Walking" look. Said relative still comes over and still does it, coupling it with small talk about "how unfair" illnesses are. Don't do that, either.
All very well but when I stuck the dressing down - in the toilets at Occombe Farm, if you must know - the cream spread and started seeping out the side of the dressing. I didn't want a numb armpit too! Looks like I got one anyway, but happily there must still have been enough cream left in the correct place as I didn't even feel the "sharp scratch" (yeah, and the rest...) that the nurses always warn you about when sticking the needle in. That phrase "sharp scratch" appears to be a universal hospital euphemism for "I'm sticking a needle in you. Get real, of course it's going to hurt, but we'll pretend it won't by making you think it should only feel like a scratch therefore you are overreacting".
Except when you have numbing cream - tangible version of gas and air, very useful stuff.
Had a lovely nurse doing my chemo today. She had lived in Chudleigh until she moved a couple weeks ago so we all had lots of Chudleigh chat to talk about.
Managed to drive myself home after the chemo, the post-chemo lack of spatial awareness doesn't seem to affect driving although I have bashed in to a couple of doorways navigating around my home - on foot - since.
The other thing that has happened recently is that like a cat with its whiskers cut off, now I have no hair I have started repeatedly banging my head. For the past 3 years I have managed to operate the under stairs cupboard safely without ever hitting my head yet since having my head shaved I have smacked in to the door frame almost every time I've opened it! How embarrassing.
I have been wearing my wigs sometimes but they are a bit faffy so I have more often been wearing other types of headgear instead. The main drawback with wearing those is that when people see me in them I inevitably get what my Cancer Friend has hilariously termed the "Cancer Sadface". I'm sure you know it. Don't do it.
I am less subtle than my Cancer Friend - when a non blood relative who shall remain nameless came over to my house and started giving me that look, I dubbed it the "Dead Man Walking" look. Said relative still comes over and still does it, coupling it with small talk about "how unfair" illnesses are. Don't do that, either.
Wednesday 10 July 2013
Accessing the port
Went to my hospital appointment today for my pre chemo blood test. The nurse looking after me says that we are going to "access the port" for the first time. Sounds like something off of Star Trek!
What actually happens is that she peruses her stash of "gripper" needles (needles with a plastic butterfly grip attached - for easy grip during heavy duty pulling...) before determining that the one inch long one will be sufficient.
She asks me whether I have been given the numbing cream. Erm, no, I haven't. Oh. Usually they recommend applying that to the port site half an hour before accessing it, so too late now, in other words.
I tell her to go ahead anyway, relying on the fact that a) I have very little feeling in the nerves in that area since my op anyway and b) as long as you're not stabbing my actual arm then you can do pretty much anything, love. Bizarre, I know, but the arm thing is just not for me, never has been.
So she grabs her gripper needle in one hand, grabs the port in the other hand (remember it's situated on my chest underneath healed over skin now ladies and gents) and sticks the needle in where she considers the middle of the port to be.
It didn't hurt. Had you going for a minute there though with that build up, didn't I?!
She flushes the port through then siphons off what must be AT LEAST 4 gallons of blood...
Then she gives me numbing cream supplies for next time and also reminds me that if I am ever in A&E I can let them know that the one inch gripper needle is the appropriate one for my port. As that will be at the forefront of my mind in an emergency situation. Perhaps I will have those instructions tattooed near the port site.
How big is a tattoo needle, again...?
What actually happens is that she peruses her stash of "gripper" needles (needles with a plastic butterfly grip attached - for easy grip during heavy duty pulling...) before determining that the one inch long one will be sufficient.
She asks me whether I have been given the numbing cream. Erm, no, I haven't. Oh. Usually they recommend applying that to the port site half an hour before accessing it, so too late now, in other words.
I tell her to go ahead anyway, relying on the fact that a) I have very little feeling in the nerves in that area since my op anyway and b) as long as you're not stabbing my actual arm then you can do pretty much anything, love. Bizarre, I know, but the arm thing is just not for me, never has been.
So she grabs her gripper needle in one hand, grabs the port in the other hand (remember it's situated on my chest underneath healed over skin now ladies and gents) and sticks the needle in where she considers the middle of the port to be.
It didn't hurt. Had you going for a minute there though with that build up, didn't I?!
She flushes the port through then siphons off what must be AT LEAST 4 gallons of blood...
Then she gives me numbing cream supplies for next time and also reminds me that if I am ever in A&E I can let them know that the one inch gripper needle is the appropriate one for my port. As that will be at the forefront of my mind in an emergency situation. Perhaps I will have those instructions tattooed near the port site.
How big is a tattoo needle, again...?
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