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!
Wednesday, 27 November 2013
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".
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