Today, literally, my hair started falling out. I have always been very proud of my hair and much as I do NOT want to lose it, I must accept this is going to happen and I don't want to walk around with lumps out my plan is that I go see my mate Steve the barber next week, get the hair cut down to a number 1 so at least I have control of it.
Will add a picture once done. Lets hope I don't look too much of a thug!
The sudden realisation that you have cancer hits you like a sledgehammer. On 9th February after 2 months of tests and all sorts thats what they told me. In more ways than one it's a life-changing moment and your mind goes into overdrive thinking all kinds of worst case scenarios.
Saturday, 24 March 2012
Day 3
When I awoke on Friday after a few hours it was still early and as I gathered my wits the immediate reaction is to feel the arm: Mr Smith had said there would be no bolts outside the skin: as my had hit the top of my right arm i could feel this inanimate lump "shit, there's a bloody great bold there" I thought. The arm was bandaged so i couldn't see anything, and at that moment the day staff nurse Sue came in. "There's a bloody bolt there" I said. "No there isn't, that's your arm but you can't feel it because of the nerve block!"
I suddenly remembered the last words the anaesthetist had said: he was going to give me a nerve block injection to numb the whole arm to stop the pain, and that's what it was, my arm but totally numb. The blocks last anything up to 12 or so hours.
Visits then ensued from the orthopaedic consultant who gave the all clear to go home, the anaesthetist did the same and the only concern is keeping the potassium up. Mr Smith has called in a physician and he is on the case: we see him Monday and he will sort that we hope, through changing my diuretics etc.
We will also start second cycle of chemo next week and have a review with the oncology team. One down, five to go!
I suddenly remembered the last words the anaesthetist had said: he was going to give me a nerve block injection to numb the whole arm to stop the pain, and that's what it was, my arm but totally numb. The blocks last anything up to 12 or so hours.
Visits then ensued from the orthopaedic consultant who gave the all clear to go home, the anaesthetist did the same and the only concern is keeping the potassium up. Mr Smith has called in a physician and he is on the case: we see him Monday and he will sort that we hope, through changing my diuretics etc.
We will also start second cycle of chemo next week and have a review with the oncology team. One down, five to go!
Day 2
Thursday dawned bright and sunny and still with the plan to operate that evening, always subject of course to the potassium levels getting to where they should be. Midday was "nil by mouth" cut off but that meant I had what could only be described as a fantastic breakfast which was probably better than many hotels would serve|: cereals, full cooked, tea, toast marmalade. Brilliant!
Jen arrived about 10.30 and we sat enjoying each others company as we always do, just chatting, to the background whirring of the potassium pump! Still the levels weren't high enough and the medical staff were undecided. However there was no point in changing the timetable so the afternoon rolled along. Welcome visits too from friends and relatives, which helped a few hours go by, but as the deadline grew closer we still waited for a definite "yes", and 4pm, 5 pm came and went and even then the anaesthetist was not sure: the nursing staff were still saying they didn't know, they hadn't had the call to take me down to theatre, and still that pump kept whirring away. Finally, and bearing in mind that the planned time for the op was 6.30pm, we got the call at 6.10! Sue, the staff nurse who was brilliant all day got me ready, and escorted me down to theatre. She was as relieved as I was I think as their efforts all day had been to get me there as much as I wanted to be there. She duly handed me over to the theatre staff and wished me luck. Again I cant say enough about how professional everyone was, and i reckon that at exactly 6.30 the anaesthetist said " in a moment you'll start to feel sleepy, and will wake up after the operation" and "pow" I was gone.
The consultant had originally said that the pinning would take about an hour, and Jen had left as i was taken to theatre. Turns out that the procedure was quote "a little more fiddly than we originally thought" which stretched the hour to over four! Jen of course is on the phone to the ward after one hour, and then no doubt many times after that as one became two became three and so on! Panic inevitably sets in and I guess credit here goes to Caroline, the night staff nurse who was taking those calls from her. Finally she called her back when i came up from recovery at some time after eleven.
My first recollection was at about midnight, but all things considered I felt ok, and was pretty alert, busting for a pee, and starving hungry. Caroline helped me out of bed, walked me the few steps to the toilet, and back, got me sat in the chair and stuck a cup of tea and a sandwich in front of me which I ate and then dozed in the chair, called Jen on the phone and dozed again, on and off over the next few hours. Caroline's attention and care overnight was brilliant, and I finally fell into a deeper and more relaxed sleep as it started to get light.
Jen arrived about 10.30 and we sat enjoying each others company as we always do, just chatting, to the background whirring of the potassium pump! Still the levels weren't high enough and the medical staff were undecided. However there was no point in changing the timetable so the afternoon rolled along. Welcome visits too from friends and relatives, which helped a few hours go by, but as the deadline grew closer we still waited for a definite "yes", and 4pm, 5 pm came and went and even then the anaesthetist was not sure: the nursing staff were still saying they didn't know, they hadn't had the call to take me down to theatre, and still that pump kept whirring away. Finally, and bearing in mind that the planned time for the op was 6.30pm, we got the call at 6.10! Sue, the staff nurse who was brilliant all day got me ready, and escorted me down to theatre. She was as relieved as I was I think as their efforts all day had been to get me there as much as I wanted to be there. She duly handed me over to the theatre staff and wished me luck. Again I cant say enough about how professional everyone was, and i reckon that at exactly 6.30 the anaesthetist said " in a moment you'll start to feel sleepy, and will wake up after the operation" and "pow" I was gone.
The consultant had originally said that the pinning would take about an hour, and Jen had left as i was taken to theatre. Turns out that the procedure was quote "a little more fiddly than we originally thought" which stretched the hour to over four! Jen of course is on the phone to the ward after one hour, and then no doubt many times after that as one became two became three and so on! Panic inevitably sets in and I guess credit here goes to Caroline, the night staff nurse who was taking those calls from her. Finally she called her back when i came up from recovery at some time after eleven.
My first recollection was at about midnight, but all things considered I felt ok, and was pretty alert, busting for a pee, and starving hungry. Caroline helped me out of bed, walked me the few steps to the toilet, and back, got me sat in the chair and stuck a cup of tea and a sandwich in front of me which I ate and then dozed in the chair, called Jen on the phone and dozed again, on and off over the next few hours. Caroline's attention and care overnight was brilliant, and I finally fell into a deeper and more relaxed sleep as it started to get light.
A Three Day Blur - Day 1
With the call on Wednesday saying come in early so they could try and raise the potassium level in my blood we arrived at the Spencer wing breathless, slightly unprepared and unsure at that moment whether the op would happen the next 72 hours really did become a blur of "will it, won't it?" that literally changed by the minute as the clock ticked by.
The problem arises because low potassium makes general anaesthetic very dangerous. At the time I was admitted on Wednesday there was no chance they were going to operate unless the potassium level was raised and the plan was simply to use either soluble tablets or an IV drip depending on the result of an initial blood test at that time. The level turned out to be lower than they thought so it was the drip option: started late afternoon and going through the evening with regular monitoring of the potassium levels along the way.
The Spencer wing is a separate building annexed to the main QEQM hospital and is designed in many ways like modern hotels: with individual rooms each en-suite with tv, wi-fi, and regular facilities like any roadside motel you'd happily stop off overnight at on a business or pleasure trip. What sets this apart from the main NHS is the relaxed but efficient atmosphere created by some of the most dedicated, professional and amazing staff I have ever encountered. Everyone from the Matron, Mary, through to the other senior nursing staff who were all very experienced (often 20 plus years) to the more junior staff what set these apart was the fact that you felt their work was still a vocation from which they still derived the utmost pleasure from doing: nothing was too much trouble, everything was carried out with a care and attention to detail and always done "now" rather than "in a minute" . Add to that a smile on faces that defined the delight they all got from doing work they obviously loved doing. Nursing staff are not enough though; and a ward relies on many ancillary and support workers: cleaners, caterers, porters, secretarial etc and without exception the same mindset was there in everyone. Every one was an absolute credit to the establishment. This is how it should be.
So Wednesday evening went by, with the potassium pump whirring away, and the IV bag due to be replaced at 2am (which it was, on the dot: another sign of the staff efficiency). Jen sat with me and we ordered dinner for her too, served with mine (chicken soup, followed by jacket potato with a variety of filling, ice cream and profiteroles for dessert. Never let it be said I don't treat her to a meal out from time to time)
The problem arises because low potassium makes general anaesthetic very dangerous. At the time I was admitted on Wednesday there was no chance they were going to operate unless the potassium level was raised and the plan was simply to use either soluble tablets or an IV drip depending on the result of an initial blood test at that time. The level turned out to be lower than they thought so it was the drip option: started late afternoon and going through the evening with regular monitoring of the potassium levels along the way.
The Spencer wing is a separate building annexed to the main QEQM hospital and is designed in many ways like modern hotels: with individual rooms each en-suite with tv, wi-fi, and regular facilities like any roadside motel you'd happily stop off overnight at on a business or pleasure trip. What sets this apart from the main NHS is the relaxed but efficient atmosphere created by some of the most dedicated, professional and amazing staff I have ever encountered. Everyone from the Matron, Mary, through to the other senior nursing staff who were all very experienced (often 20 plus years) to the more junior staff what set these apart was the fact that you felt their work was still a vocation from which they still derived the utmost pleasure from doing: nothing was too much trouble, everything was carried out with a care and attention to detail and always done "now" rather than "in a minute" . Add to that a smile on faces that defined the delight they all got from doing work they obviously loved doing. Nursing staff are not enough though; and a ward relies on many ancillary and support workers: cleaners, caterers, porters, secretarial etc and without exception the same mindset was there in everyone. Every one was an absolute credit to the establishment. This is how it should be.
So Wednesday evening went by, with the potassium pump whirring away, and the IV bag due to be replaced at 2am (which it was, on the dot: another sign of the staff efficiency). Jen sat with me and we ordered dinner for her too, served with mine (chicken soup, followed by jacket potato with a variety of filling, ice cream and profiteroles for dessert. Never let it be said I don't treat her to a meal out from time to time)
Wednesday, 21 March 2012
Hotel? or Hospital?.
So I am sat here in a private room, with Tv and ensuite, staff who cant do enough forvme and they are pumping potassium into me on an intravenous pump. Theres about half of the first bag left and that should be done about 2am. The night staff will swap it at 2cand hopefully the morning will see my potassium level at a point where they are happy for the op to go ahead. I do hope so.
Jen stayed here all afternoon and we had dinner together in the room. Nice food too. She went home about 6.30 and while i know she would rather have stayed here i hope she gets a good nights sleep and of course she will be back in the morning.
I would like to mention here the firm for whom I work : Addison Lee. They pay for my Bupa cover, and have been so supportive right from the word go. In these days of hard headed business and dog eat dog I am eternally grateful to everyone at Addy Lee for their support and good wishes
For now I can only hope that the intravenous pump overnight does the trick, and that everybody agrees the op can go ahead as planned tomorrow evening.
More from me in the morning
Jen stayed here all afternoon and we had dinner together in the room. Nice food too. She went home about 6.30 and while i know she would rather have stayed here i hope she gets a good nights sleep and of course she will be back in the morning.
I would like to mention here the firm for whom I work : Addison Lee. They pay for my Bupa cover, and have been so supportive right from the word go. In these days of hard headed business and dog eat dog I am eternally grateful to everyone at Addy Lee for their support and good wishes
For now I can only hope that the intravenous pump overnight does the trick, and that everybody agrees the op can go ahead as planned tomorrow evening.
More from me in the morning
Gimme Some Tummy
Yesterday we had a call from the hospital after my blood tests to say they had decided that my white blood cell count was too low. As a result of this the oncologists said I did need to have a short course of G-CSF. So in we trundle to the Spencer wing at 5pm to have an injection: I am sat there holding out my left arm, like you do, and the nurse grins and says "Gimme some tummy!"
This particular injection is preferred to be given into soft tissue as it's absorbed far quicker that way and tummy is as good a place as any!
So with that done we are sat here this morning expecting to go back this evening for another injection and the phone rings:: hospital to say now they have decided my potassium levels are too low. I can't have a general anaesthetic with this low a potassium level. So now they want me in this afternoon to stay, to enable them to increase the potassium level either by tablets or IV drip so we can still have the operation tomorrow evening.
That completely screws all the plans for a nice unhurried admission at 4.30pm tomorrow and adds an extra night to the stay but rather than cancel or delay the op it's better i get in there today and they fix the potassium. I suppose I could just sit here and munch a ton of bananas which are good for potassium but its probably a bit hit and miss!
Still I have the G-CSF injection to look forward to later again and Staff Nurse Mary saying "Gimme some tummy!" again.
This particular injection is preferred to be given into soft tissue as it's absorbed far quicker that way and tummy is as good a place as any!
So with that done we are sat here this morning expecting to go back this evening for another injection and the phone rings:: hospital to say now they have decided my potassium levels are too low. I can't have a general anaesthetic with this low a potassium level. So now they want me in this afternoon to stay, to enable them to increase the potassium level either by tablets or IV drip so we can still have the operation tomorrow evening.
That completely screws all the plans for a nice unhurried admission at 4.30pm tomorrow and adds an extra night to the stay but rather than cancel or delay the op it's better i get in there today and they fix the potassium. I suppose I could just sit here and munch a ton of bananas which are good for potassium but its probably a bit hit and miss!
Still I have the G-CSF injection to look forward to later again and Staff Nurse Mary saying "Gimme some tummy!" again.
Saturday, 17 March 2012
Silver Linings.
When Jen had her stroke over 6 years ago, we sometimes felt like the world was at an end; everything that needed doing from getting up and getting her dressed in the mornings to getting her to bed at night seemed to present an almost insurmountable and often frustrating challenge which, when faced from the perspective that we are all used to might well have led to despair and self-pity.
What we both learned from those times was that if you're prepared to sit down, examine the problem logically and apply what skills you have, often from a slightly lateral thinking angle, you can pretty much do anything. We have always said that we wouldn't let her disability stop us doing things, and we certainly haven't. We work as a team. We don't think it's funny that even if we are out at a restaurant I will cut her food up; that if she needs help to get out of a chair I will help (the effective use of counterbalance etc that we have found to do this means she gets out of a seat as quickly as anyone) that sometimes you can't just dash out to the car to pop to the shops, but that you might need to take a few minutes more. Planning is important, but once you have practised those things a few times, and developed the team skills you both know what to do, and they become the norm.
This time we find that the person who may need the help in some situations is me, but the fact that we have done many of these things for the last 6 years has given us a head start.
There is one important other aspect too: we enjoy helping each other, we like being in each other's company and that mutual helping can be very rewarding too. I bet we can butter a slice of bread, or cook breakfast better than most right now who only have use of one hand each. Each little obstacle overcome is a triumph.
You must always look for those silver linings: we have a beautiful car as a result of her DLA benefit. Yes we would give it back right now if it meant her being as she used to be but in reality that's not happening so lets take it, and appreciate it as one of those silver linings. The most obvious one for us from my cancer is that we get to spend time in each other's company, just us. Since the day we met we haven't had that opportunity just because of work, family, kids etc. So this time together is good for us, and again while I would rather NOT have cancer, that isn't happening so we take the best from it and face ewhat problems it throws at us head on, together, always as a team.
We have found that the chemotherapy at the moment knocks me out totally by about 2pm: to the point where I have to go to bed for an hour or two, so any little jobs or errands that we have to do we do in the morning, they are done by that time (again we plan those things if we can) so I can rest and take that couple of hours to recharge.
Now here's a thing: I said in an earlier post I wanted to get the pictures of my x-rays to post here on the blog, but even though they are MY bones did you know that you have to fill in a huge form and apply to the NHS for copies! They then decide if you can have them, and supply them on a CD. That's all very well, but, yes you guessed it, you have to pay £25 for the privilege. I thought the whole idea of the NHS was it was free for the user at the point of delivery? Not so! A bit like the parking charges. I am pretty sure pregnant mums don't pay £25 for their ultrasounds of unborn babies do they? And these days everything is digital and saved onto hard drives because this last week I have seen at least 4 different people view my x-rays on computers in different locations at the hospital! Why somebody can't just send me an e-mail with the x-ray attached I have no idea!
What we both learned from those times was that if you're prepared to sit down, examine the problem logically and apply what skills you have, often from a slightly lateral thinking angle, you can pretty much do anything. We have always said that we wouldn't let her disability stop us doing things, and we certainly haven't. We work as a team. We don't think it's funny that even if we are out at a restaurant I will cut her food up; that if she needs help to get out of a chair I will help (the effective use of counterbalance etc that we have found to do this means she gets out of a seat as quickly as anyone) that sometimes you can't just dash out to the car to pop to the shops, but that you might need to take a few minutes more. Planning is important, but once you have practised those things a few times, and developed the team skills you both know what to do, and they become the norm.
This time we find that the person who may need the help in some situations is me, but the fact that we have done many of these things for the last 6 years has given us a head start.
There is one important other aspect too: we enjoy helping each other, we like being in each other's company and that mutual helping can be very rewarding too. I bet we can butter a slice of bread, or cook breakfast better than most right now who only have use of one hand each. Each little obstacle overcome is a triumph.
You must always look for those silver linings: we have a beautiful car as a result of her DLA benefit. Yes we would give it back right now if it meant her being as she used to be but in reality that's not happening so lets take it, and appreciate it as one of those silver linings. The most obvious one for us from my cancer is that we get to spend time in each other's company, just us. Since the day we met we haven't had that opportunity just because of work, family, kids etc. So this time together is good for us, and again while I would rather NOT have cancer, that isn't happening so we take the best from it and face ewhat problems it throws at us head on, together, always as a team.
We have found that the chemotherapy at the moment knocks me out totally by about 2pm: to the point where I have to go to bed for an hour or two, so any little jobs or errands that we have to do we do in the morning, they are done by that time (again we plan those things if we can) so I can rest and take that couple of hours to recharge.
Now here's a thing: I said in an earlier post I wanted to get the pictures of my x-rays to post here on the blog, but even though they are MY bones did you know that you have to fill in a huge form and apply to the NHS for copies! They then decide if you can have them, and supply them on a CD. That's all very well, but, yes you guessed it, you have to pay £25 for the privilege. I thought the whole idea of the NHS was it was free for the user at the point of delivery? Not so! A bit like the parking charges. I am pretty sure pregnant mums don't pay £25 for their ultrasounds of unborn babies do they? And these days everything is digital and saved onto hard drives because this last week I have seen at least 4 different people view my x-rays on computers in different locations at the hospital! Why somebody can't just send me an e-mail with the x-ray attached I have no idea!
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