Anyone ever signed up for something and looked at what they had signed afterwards and thought "crumbs how did that happen?!".
I went to the hospital today and saw a very nice lady, a Consultant Gynaecologist. I came away having signed a consent form for a (deep breath) Robotic Laparascopic total hysterectomy and bilateral salpingo-oopherectomy.
Don't get me wrong, it's what I've wanted all along, but as I made my way to my fourth pre surgery assessment clinic in less than 12 months I did fleetingly wonder how it all came to this. They've not quite reserved me my own chair in the pre assessment waiting room yet but my acquired nonchalance meant that even when I ended up with the slightly eccentric but sweet nurse doing my bloods I didn't even mind. Good thing too as it turns out, given that once the needle was in she promptly dropped one of the tubes on the floor and had to bend down and pick it up whilst holding the needle still in my vein. She said that had never happened to her before. I'd rather she bent down than took the needle out and stuck me again though!
Anyway back to the robot. Apparently I am an ideal candidate for keyhole surgery using the robot device. Great, off we go with that then. I shall be asleep so it is not really my concern whether R2-D2 performs my op, as long as he does a reasonable job.
The date of the surgery is 4th March. I already know I am on the afternoon list so at least I will be able to have breakfast and there won't be any waiting at hospital from 7.30am until 4.30pm hell, like last time.
Thursday, 30 January 2014
Friday, 17 January 2014
In which hospital becomes a daily routine
Well it's been a while since I updated but if you assumed that meant that I'd been lying around doing nothing then to be honest, you wouldn't be that far off the mark.
I started 15 daily sessions of radiotherapy on 2nd January - Happy New Year to me...
My first few appointments were at 11.45 and I have to say, that appointment time was hugely irritating. What the hell has happened to hospital parking?? Now I have been coming to the place since April last year and I thought I had got to know the good and bad times for parking. However there has now been a complete shift back to the bad old days of not being able to get a space unless you arrive by 9am. What's that all about? It's not a gym for Christ's sake, it's not like everyone makes a bloody resolution to go to hospital more frequently in January!! I certainly didn't, anyway, although clearly that's how it has turned out given that I've been there every weekday since 2nd January now.
After a few 11.45 appointments I shifted to my requested earlier time of 9.30 which is much better for parking.
The radiotherapy itself involves a 15 minute session being 13 minutes of getting undressed, lying on a table and being manipulated to the nearest millimetre whilst imitating a dead weight and 2 minutes of being left alone in the room listening to the likes of Lenny Kravitz and Paul Young (hadn't heard "Every time you go away" for ages, quite enjoyed it) while a huge arm/beam device moves around targeting specific points on the chest wall with a radiation beam. They always put a jelly like pad on me first which kids the machine in to thinking there is tissue there - as opposed to skin and bone - as apparently otherwise the machine will give its best dose too far in to the chest whereas they want it to hit the chest wall itself. Tedious technical lecture over, moving on now.
The staff are all very nice but noted some of them have very cold hands.
There has been one day when treatment was aborted as the machine broke down. Apparently this is not a major problem and they have just added an extra day on at the end.
As for side effects, I'm getting a pinkish area at the site being treated. Looks like sunburn but you can't feel it like sunburn. The head radiotherapy
lady keeps shaking her head and saying there is a definite risk of the skin "breaking down". Having had chemo I'm now familiar with the throwing-all-possible-side-effects-out-there-in-the-hope-that-if-they-don't-in-fact-occur-the-patients-will-think-everything-is-just-dandy technique and I hope that is what is going to apply here. I shall keep on applying the aqueous cream and we will see.
In other news I have received my free prescription card. The mind boggles at the number of things I could now potentially obtain entirely gratis!
Also, Christmas happened. It was nice family time but frustrating being forbidden from even peeling a potato. I'm pleased to report that after a second course of antibiotics prescribed by my surgeon on Christmas Eve the infection seems to have passed and the range of movement in the arm has started to improve too. By itself. Now I don't want to discredit the exercises they recommended doing, but they didn't feel right so I stopped them. In some cases perhaps there is a school of thought which suggests that the concept of "Physio" is possibly no different to the concept of "Time".
Happy New Year one and all.
I started 15 daily sessions of radiotherapy on 2nd January - Happy New Year to me...
My first few appointments were at 11.45 and I have to say, that appointment time was hugely irritating. What the hell has happened to hospital parking?? Now I have been coming to the place since April last year and I thought I had got to know the good and bad times for parking. However there has now been a complete shift back to the bad old days of not being able to get a space unless you arrive by 9am. What's that all about? It's not a gym for Christ's sake, it's not like everyone makes a bloody resolution to go to hospital more frequently in January!! I certainly didn't, anyway, although clearly that's how it has turned out given that I've been there every weekday since 2nd January now.
After a few 11.45 appointments I shifted to my requested earlier time of 9.30 which is much better for parking.
The radiotherapy itself involves a 15 minute session being 13 minutes of getting undressed, lying on a table and being manipulated to the nearest millimetre whilst imitating a dead weight and 2 minutes of being left alone in the room listening to the likes of Lenny Kravitz and Paul Young (hadn't heard "Every time you go away" for ages, quite enjoyed it) while a huge arm/beam device moves around targeting specific points on the chest wall with a radiation beam. They always put a jelly like pad on me first which kids the machine in to thinking there is tissue there - as opposed to skin and bone - as apparently otherwise the machine will give its best dose too far in to the chest whereas they want it to hit the chest wall itself. Tedious technical lecture over, moving on now.
The staff are all very nice but noted some of them have very cold hands.
There has been one day when treatment was aborted as the machine broke down. Apparently this is not a major problem and they have just added an extra day on at the end.
As for side effects, I'm getting a pinkish area at the site being treated. Looks like sunburn but you can't feel it like sunburn. The head radiotherapy
lady keeps shaking her head and saying there is a definite risk of the skin "breaking down". Having had chemo I'm now familiar with the throwing-all-possible-side-effects-out-there-in-the-hope-that-if-they-don't-in-fact-occur-the-patients-will-think-everything-is-just-dandy technique and I hope that is what is going to apply here. I shall keep on applying the aqueous cream and we will see.
In other news I have received my free prescription card. The mind boggles at the number of things I could now potentially obtain entirely gratis!
Also, Christmas happened. It was nice family time but frustrating being forbidden from even peeling a potato. I'm pleased to report that after a second course of antibiotics prescribed by my surgeon on Christmas Eve the infection seems to have passed and the range of movement in the arm has started to improve too. By itself. Now I don't want to discredit the exercises they recommended doing, but they didn't feel right so I stopped them. In some cases perhaps there is a school of thought which suggests that the concept of "Physio" is possibly no different to the concept of "Time".
Happy New Year one and all.
Friday, 20 December 2013
The Twelve Days of Christmas
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!
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!
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.
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