The most astute of you may have noticed a pattern emerging here - let me explain because, to be honest, the evidence for that is weak, but it is there.
The first part of this blog was started more than three years ago, when I was diagnosed with bowel cancer. The blog detailed my treatment for that cancer, then abruptly went silent when the treatment finished - strike one.
All was good for a couple of years then we pick up the story when I was diagnosed with bladder cancer, and the posts became more frequent, detailing my treatment for that also. Again when that treatment finished, all went silent (strike two) - until now.
The reason for the update is I have received strike three.
Actually I received it several months ago - I have just been put off writing about it, but the time has come, so here goes.
Strike three initially took the form of a sore chest - a sharp pain in the chest just to the left of by breastbone.
I happened to be at my GP for something completely different and mentioned it (to the locum GP who I was seeing that day).
She was concerned that it may be a blood clot, so arranged for me to have a scan at St Johns. I duly went for the scan and the discovered that I did not have any blood clots, but that there was a growth on one of my ribs. I was sent for a different type of scan at the new Edinburgh Royal which confirmed this diagnosis and immediately I am back into the system after just escaping it.
We were referred to the oncology department again and met Dr Law, who has now taken over my case from Dr Howard, my Oncologist from the bladder cancer. Dr Howard has retired, and I wish him a long and happy retirement.
Helen and I met Dr Law one Thursday afternoon at St Johns hospital. We took Matthew Clifton-Brown, our church leader along for moral support, because to be honest, by that time we kind of knew the worst.
So the official diagnosis was metastatic bladder cancer tumours on the bones - actually a few of them. One major one is on my (7th?) rib and was the one that had been causing the problems, but it turns out that there are also a few, much smaller growths on my pelvis. the upshot is that these growths are not treatable and I have been diagnosed as terminal - strike three.
The irony of this is that I was given this news two days after my final appointment with Dr Phillips, the original oncologist form the good old days when I 'only' had bowel cancer. After three years with no recurrence of that I have been put on a care and maintenance regime and will not see him for two years. As it stands at the moment I am not expecting to make that appointment.
There is much more to this tale, which I will continue with in future posts, but for now that is enough.
God bless
Graham
Saturday 3 December 2011
Tuesday 14 June 2011
Warnings
Our hero was discharged from hospital at the end of the last post, sporting a wound stretching from his (my) navel to his (my) ribs. I also have my shiny new Stoma and Urostomy.
The wound still has twenty-five or so staples left in, holding the sides of the wound together while it heals. A similar number had been removed by the ward staff before I was discharged from the hospital. I made an appointment with the practice nurse to remove the rest of the staples, but the next available appointment was on the Thursday (three days after my discharge).
Day two out of hospital and a letter arrives from my work, informing me that the period of full pay was coming to an end and I am due to start on SSP from the beginning of the next month (about 5 days time).
This means an immediate period of frantic activity, cancelling direct debits and other outgoings to reduce our overall monthly spending. Sky were funny (but helpful) and gave us a discount, as well as a credit, to enable us to keep our account open - Bannatynes, on the other hand, were extremely unhelpful and unsympathetic (boo)
Thursday came along and I went to the surgery for the nurse to remove the final staples. Everything went well. The staples came out with very little difficulty, and I spent some time discussing my situation with the GP.
I walked back home and carried on with my frantic phone calls. Helen arrived home and came up to see me and the scar now that the staples had finally been removed. She took one look at it and freaked out (I don't think that is too strong a description).
The wound had opened back up and there was a hole about two inches by one inch. I could not feel a thing, but Helen was seriously traumatised.
I ended up in the Western Infirmary again (after three hours in A & E at St Johns). I finally got to bed around 3 am, after visits from, first, one nurse then the doctor then a second nurse (this one to patch it up, finally, fortunately).
The registrar came to visit me the next morning and duly inspected the, by now, infamous wound. He pronounced it minor - a blip, in fact - and I could be discharged without further work, as long as the district nurses attended every day to dress the wound.
Our very good friend Becci Hale was also a doctor on the ward at that time and arranged for some private transport for me home. Twenty minutes later one of the nurses appeared and informed me that the transport was ready - unfortunatly, I was not. I hurriedly got dressed and was taken down to the hospital main entrance. I was taken home by a very nice volunteer driver named Pat. I arrived home at around 11 am, just over twelve hours after leaving.
This episode was a warning. I needed to take it much slower. In fact I was not able to do nearly as much as I was before the staples were removed, and the wound was much more painful. I decided that I would take the full amount of painkillers available.
The last two weeks have been a VERY gradual improvement. I have been out of the house three times (once to the GP, once to Sainsburys and once for lunch with a friend from work). I have also managed to walk round the block once, but then needed to rest for the rest of the evening.
The would is healing very slowly. The District Nurses have been coming in every day for two weeks, and have just decided that it can be reduced to every two days, as the wound is now better. It is likely however to be another three weeks before it is completely healed, and even then it will continue healing underneath for several more months.
The Stoma seems to be working fine, and still getting smaller. I have been ordering new underwear, now that am entitled to it on prescription.
I have been back to the consultant (Mr Marriappan). The bladder and lymph nodes have been analysed and there is no cancer outside the bladder. There were microspots on the surface of the bladder, making this a stage IIIa tumour which seems to have around a 75% chance of survival.
I have to say though, as a Christian, I believe that percentage chances are immaterial. My future is in God's hand. If He wants me to be cancer free then it will never recur, no matter what the odds are. On the other hand, if he wants to bring me home (to Heaven) sooner rather than later, nothing on Gods Earth, including chemotherapy, radiotherapy or surgeons can stop it - it is either a 100% or 0% chance.
God bless
Graham
The wound still has twenty-five or so staples left in, holding the sides of the wound together while it heals. A similar number had been removed by the ward staff before I was discharged from the hospital. I made an appointment with the practice nurse to remove the rest of the staples, but the next available appointment was on the Thursday (three days after my discharge).
Day two out of hospital and a letter arrives from my work, informing me that the period of full pay was coming to an end and I am due to start on SSP from the beginning of the next month (about 5 days time).
This means an immediate period of frantic activity, cancelling direct debits and other outgoings to reduce our overall monthly spending. Sky were funny (but helpful) and gave us a discount, as well as a credit, to enable us to keep our account open - Bannatynes, on the other hand, were extremely unhelpful and unsympathetic (boo)
Thursday came along and I went to the surgery for the nurse to remove the final staples. Everything went well. The staples came out with very little difficulty, and I spent some time discussing my situation with the GP.
I walked back home and carried on with my frantic phone calls. Helen arrived home and came up to see me and the scar now that the staples had finally been removed. She took one look at it and freaked out (I don't think that is too strong a description).
The wound had opened back up and there was a hole about two inches by one inch. I could not feel a thing, but Helen was seriously traumatised.
I ended up in the Western Infirmary again (after three hours in A & E at St Johns). I finally got to bed around 3 am, after visits from, first, one nurse then the doctor then a second nurse (this one to patch it up, finally, fortunately).
The registrar came to visit me the next morning and duly inspected the, by now, infamous wound. He pronounced it minor - a blip, in fact - and I could be discharged without further work, as long as the district nurses attended every day to dress the wound.
Our very good friend Becci Hale was also a doctor on the ward at that time and arranged for some private transport for me home. Twenty minutes later one of the nurses appeared and informed me that the transport was ready - unfortunatly, I was not. I hurriedly got dressed and was taken down to the hospital main entrance. I was taken home by a very nice volunteer driver named Pat. I arrived home at around 11 am, just over twelve hours after leaving.
This episode was a warning. I needed to take it much slower. In fact I was not able to do nearly as much as I was before the staples were removed, and the wound was much more painful. I decided that I would take the full amount of painkillers available.
The last two weeks have been a VERY gradual improvement. I have been out of the house three times (once to the GP, once to Sainsburys and once for lunch with a friend from work). I have also managed to walk round the block once, but then needed to rest for the rest of the evening.
The would is healing very slowly. The District Nurses have been coming in every day for two weeks, and have just decided that it can be reduced to every two days, as the wound is now better. It is likely however to be another three weeks before it is completely healed, and even then it will continue healing underneath for several more months.
The Stoma seems to be working fine, and still getting smaller. I have been ordering new underwear, now that am entitled to it on prescription.
I have been back to the consultant (Mr Marriappan). The bladder and lymph nodes have been analysed and there is no cancer outside the bladder. There were microspots on the surface of the bladder, making this a stage IIIa tumour which seems to have around a 75% chance of survival.
I have to say though, as a Christian, I believe that percentage chances are immaterial. My future is in God's hand. If He wants me to be cancer free then it will never recur, no matter what the odds are. On the other hand, if he wants to bring me home (to Heaven) sooner rather than later, nothing on Gods Earth, including chemotherapy, radiotherapy or surgeons can stop it - it is either a 100% or 0% chance.
God bless
Graham
Soup
This post follows on directly from the last two part post, describing my recent minor surgery. Part one is here
I have a telescoped memory of the evening of Thursday 12th May. I have memories of waking in the recovery room after the operation. The Anaesthetist was busy sticking a central line into my throat. That morning I was given an epidural for pain management after the operation (not during as some people thought).
One of the problems with an epidural is that it can interfere with blood pressure. There is a fine line between effective pain relief and problems with blood pressure. I arrived in the recovery ward at around 7 pm (after eleven hours in theatre) and eventually left for the High Dependency Unit at 1 am. The Anaesthetist had been on duty since before 8 am - that was when he put the epidural line in. He finally left around 12.30 am - sixteen or so hours later.
Friday, Saturday and Sunday passed in a bit of a blur, gradually becoming clearer as time went by. I didn't get out of bed much during this period. The first time I tried, I was in my chair for about twenty minutes (while they changed the sheets) before my blood pressure went through the floor. I was shunted back into bed as soon as possible!
On Monday I was moved from the HDU to the normal ward (Ward 57). Life started to get better. The epidural was removed and my blood pressure started to return to normal. Gradually all the tubes and lines were removed. Bowel movements returned to normal and I started my lifetime relationship with my baggy.
The time in hospital was fairly straight forward - each day was easier, and I was able to do (a little) more. The highlight was walking to the end of the corridor to the patients day room to watch 'Bargain Hunt' - this was a major achievement (not Bargain Hunt, but getting there).
Eventually I was well enough to escape from the ward. Visitors would hijack a wheelchair and we would escape to the WRVS cafe on the ground floor. Again as the week progressed I tried walking back, rather than using the chair (although it was never far away).
On my second Monday in hospital (day 11 Post Op) I only had one set of tubes left - two very narrow stents coming out of the Stoma. One final test, called a Lupogram, was scheduled for that day. This checks for leakage within the stoma and kidneys. This was the final barrier to being discharged. Fortunately, there were no problems so the stents (thin wire-like tubes) were removed.
The wound looked good and was healing well, my bowel was returning to normal and the urostomy bag and stoma were performing as normal.
The nurses on the ward removed about half the staples in the scar on my stomach. I was told to make an appointment with my practice nurse to get the others removed as soon as possible.
The title of this post is inspired by hospital food. It turns out that hospital food is as bad as it is reputed to be. One of the exceptions to this is soup. The soup which is made every day is excellent. The fact that this was the only food I had for a week is, of course, nothing to do with it!
After all this, if you are still interested, you can continue reading here
I have a telescoped memory of the evening of Thursday 12th May. I have memories of waking in the recovery room after the operation. The Anaesthetist was busy sticking a central line into my throat. That morning I was given an epidural for pain management after the operation (not during as some people thought).
One of the problems with an epidural is that it can interfere with blood pressure. There is a fine line between effective pain relief and problems with blood pressure. I arrived in the recovery ward at around 7 pm (after eleven hours in theatre) and eventually left for the High Dependency Unit at 1 am. The Anaesthetist had been on duty since before 8 am - that was when he put the epidural line in. He finally left around 12.30 am - sixteen or so hours later.
Friday, Saturday and Sunday passed in a bit of a blur, gradually becoming clearer as time went by. I didn't get out of bed much during this period. The first time I tried, I was in my chair for about twenty minutes (while they changed the sheets) before my blood pressure went through the floor. I was shunted back into bed as soon as possible!
On Monday I was moved from the HDU to the normal ward (Ward 57). Life started to get better. The epidural was removed and my blood pressure started to return to normal. Gradually all the tubes and lines were removed. Bowel movements returned to normal and I started my lifetime relationship with my baggy.
The time in hospital was fairly straight forward - each day was easier, and I was able to do (a little) more. The highlight was walking to the end of the corridor to the patients day room to watch 'Bargain Hunt' - this was a major achievement (not Bargain Hunt, but getting there).
Eventually I was well enough to escape from the ward. Visitors would hijack a wheelchair and we would escape to the WRVS cafe on the ground floor. Again as the week progressed I tried walking back, rather than using the chair (although it was never far away).
On my second Monday in hospital (day 11 Post Op) I only had one set of tubes left - two very narrow stents coming out of the Stoma. One final test, called a Lupogram, was scheduled for that day. This checks for leakage within the stoma and kidneys. This was the final barrier to being discharged. Fortunately, there were no problems so the stents (thin wire-like tubes) were removed.
The wound looked good and was healing well, my bowel was returning to normal and the urostomy bag and stoma were performing as normal.
The nurses on the ward removed about half the staples in the scar on my stomach. I was told to make an appointment with my practice nurse to get the others removed as soon as possible.
The title of this post is inspired by hospital food. It turns out that hospital food is as bad as it is reputed to be. One of the exceptions to this is soup. The soup which is made every day is excellent. The fact that this was the only food I had for a week is, of course, nothing to do with it!
After all this, if you are still interested, you can continue reading here
Decision time - part two
For the first part of this post go here...
For the discussion with the Consultant, we had been moved to a small side room in the Ward One. We were left to discuss the options and and make our decision. We prayed about this, asking God for peace about the correct way forward, but really it was a very easy decision.
When the consultant returned we told him that we wanted to go straight for the operation. My strong feeling was that we would go through four/six weeks of radiotherapy and all the recovery period and end up back in the same position, without the options. I felt an immense sense of peace over this decision. Seven months ago in November, we were faced with the same decision and I tried everything to get out of it. This time I was ready.
We were immediately sent to see the surgeon and accepted on to his list. It was likely that the operation would be about four weeks later, to allow the residual chemo to get out of my system. We went home and started the waiting period.
Nothing particularly exciting happened in this four week period. Gradually I recovered from the chemo getting ready for the operation. It would be longer because the surgeon needed to sort out the hernia which had developed in my stomach after the last operation.
The time of the operation approached. The Stoma Nurse visited me the day before I was admitted, to mark out the position of the stoma with an indelable ink pen - a large black spot on my stomach around two inches to the (my) right of my tummy button.
Brief aside to describe the actual procedure planned. The bladder is removed and a small piece fo the large bowel is also removed. This is connected to the kidneys and extruded out of the skin of the stomach - this is the Stoma. It is (currently) just over one inch in diameter and sticks out about three quarters of an inch. It does shrink in size after several months. 'Wee' continuously drips out of this and in to a bag stuck on to the skin of my stomach - a urostomy bag, my new best friend.
The next day (Wednesday 11th May) I was admitted to the Western General in preparation for this operation.
If you are still interested, thedetails of my stay in hospital are here....
For the discussion with the Consultant, we had been moved to a small side room in the Ward One. We were left to discuss the options and and make our decision. We prayed about this, asking God for peace about the correct way forward, but really it was a very easy decision.
When the consultant returned we told him that we wanted to go straight for the operation. My strong feeling was that we would go through four/six weeks of radiotherapy and all the recovery period and end up back in the same position, without the options. I felt an immense sense of peace over this decision. Seven months ago in November, we were faced with the same decision and I tried everything to get out of it. This time I was ready.
We were immediately sent to see the surgeon and accepted on to his list. It was likely that the operation would be about four weeks later, to allow the residual chemo to get out of my system. We went home and started the waiting period.
Nothing particularly exciting happened in this four week period. Gradually I recovered from the chemo getting ready for the operation. It would be longer because the surgeon needed to sort out the hernia which had developed in my stomach after the last operation.
The time of the operation approached. The Stoma Nurse visited me the day before I was admitted, to mark out the position of the stoma with an indelable ink pen - a large black spot on my stomach around two inches to the (my) right of my tummy button.
Brief aside to describe the actual procedure planned. The bladder is removed and a small piece fo the large bowel is also removed. This is connected to the kidneys and extruded out of the skin of the stomach - this is the Stoma. It is (currently) just over one inch in diameter and sticks out about three quarters of an inch. It does shrink in size after several months. 'Wee' continuously drips out of this and in to a bag stuck on to the skin of my stomach - a urostomy bag, my new best friend.
The next day (Wednesday 11th May) I was admitted to the Western General in preparation for this operation.
If you are still interested, thedetails of my stay in hospital are here....
Decision time - part one
The last time this blog was updated our hero was last seen departing into the sunset from St Johns Hospital after spending a couple of nights recovering from a chest infection.
Since that time, many notable things have happened that I should have been blogging about, but just couldn't summon up the will to do so. That time has now come, so here goes.
Picking up the narrative where we left off, I had missed one session of chemo during the time in St Johns. That session was rearranged and carried out as normal. After that a further biopsy was arranged, overnight in the Western General with a general anaesthetic. Again this went smoothly and I came home again to await the results. I was due to have a session of chemo on the day that the Multi Disciplinary Team (MDT) met.
I was prepped for the chemo, just in case, just in case they decided to continue the chemo. Around an hour after we arrived the Consultant arrived and asked for Helen and I (she had come with me that morning). The results of the biopsy showed that the tumour had not responded and in fact they had removed more of the tumour during the biopsy.
It turns out that the response to chemo is also an indicator to the response to radiotherapy. Thus, asI had responded poorly to the chemo, it was likely that I would respond poorly to radiotherapy. We were faced with a decision. Go through the radio therapy, which can be very tiring, with the possibility/probability that is would be ineffective and we would be in the same position again in six months, or do I just go straight for the infinitely less desirable operation to remove my bladder.
part 2 follows here...
Since that time, many notable things have happened that I should have been blogging about, but just couldn't summon up the will to do so. That time has now come, so here goes.
Picking up the narrative where we left off, I had missed one session of chemo during the time in St Johns. That session was rearranged and carried out as normal. After that a further biopsy was arranged, overnight in the Western General with a general anaesthetic. Again this went smoothly and I came home again to await the results. I was due to have a session of chemo on the day that the Multi Disciplinary Team (MDT) met.
I was prepped for the chemo, just in case, just in case they decided to continue the chemo. Around an hour after we arrived the Consultant arrived and asked for Helen and I (she had come with me that morning). The results of the biopsy showed that the tumour had not responded and in fact they had removed more of the tumour during the biopsy.
It turns out that the response to chemo is also an indicator to the response to radiotherapy. Thus, asI had responded poorly to the chemo, it was likely that I would respond poorly to radiotherapy. We were faced with a decision. Go through the radio therapy, which can be very tiring, with the possibility/probability that is would be ineffective and we would be in the same position again in six months, or do I just go straight for the infinitely less desirable operation to remove my bladder.
part 2 follows here...
Thursday 24 March 2011
All by Myself (part 2)
(this is part 2 of a longer post, so if you haven't read the first part go here)
I felt a bit better by morning, but I dozed until about 1 o'clock, in between blood tests, doctors rounds and more BP and temperature readings.
Normally I don't have a problem giving blood or getting injections or drips etc - it is a bit of an occupational hazard when you are on chemo - however I was getting a bit paranoid after six or seven needles in 24 hours.
The drip was being administered through a needle in my arm which had been placed by the A & E doctor the previous evening. It did seem to be OK at the time, although it Helen tells me there was blood all over the floor and the trolley by the time he had finished.
Anyway, by Tuesday morning it was beginning to hurt a bit - more than a bit in fact. It felt like someone was hammering a screwdriver (Phillips, not flat headed though) into the bones of my wrist every 10 seconds or so. I mentioned it to one of the nurses assigned to me (isolation, again) and after a suitably long period of time I was given some paracetamol for the pain. Surprisingly it did actually work.
Later that morning another doctor came and took the original one out and put in a new one in the other arm. This one was actually much better and didn't hurt at all (I can still feel the original one in my arm occasionally).
Later that morning another doctor came and took the original one out and put in a new one in the other arm. This one was actually much better and didn't hurt at all (I can still feel the original one in my arm occasionally).
During this time my temperature spiked again and after the (reasonably) lucid time during the afternoon, I was more than a bit dopey again during the evening. Helen came back again, brining Katie with her this time
Katie is unable to sit still for longer that ten minutes so we sent her off to the shop to get herself some chocolate. She came back telling us that she had got lost in the sub basement before finding her way back again (via the shop of course). She said it seemed creepy - a bit like a scene from Doctor Who. After that it didn't seem appropriate to tell her that the morgue was down there.....
That night I slept better, although I was still up and down most of the night. At some point the drip finished and the one fo the night staff must have disconnected me form the drip. This made sleeping much easier, not to mention the trips to the toilet (without the drip on its wonky stand).
Morning rounds brought the doctor who decided that my temperature had fallen and my blood count risen enough such that staying in hospital was worse for me (due to the risk of infection) than going home. My parents were due to visit me that afternoon, so I phoned them and asked if they would be willing to take me home, rather than sit around the hospital. that was about 10.30 or 11.00
They arrived at about 2-ish and bumped in to Dan Hudson, our church leader, who had snuck in outside normal visiting hours. Dan left shortly after this and we sat down to wait. We kept asking what the holdup was, but no one was willing to commit. Around 3.30 one of the pharmacists arrived to check that I knew about paracetamol reducing temperatures. Since I had been told evety time I had been given one for the last two days I managed to re-assure her. When we checked with her, she said it would be before 5.30 - another two hours.
We ended up switching on the tv and watching some aytime quiz to pass the time. Andy Brough also turned up during the afternoon - it was good to see him too.
Sure enough, just around 5.15 the nurse assigned to me came into start the discharge process. We actually walked out the door of the hospital at about 5.40. As much as I admire the NHS and appreciate the care that the nurses and doctors give, waiting for 7 hours to be allowed home was more than a bit frustrating....
It has taken me a full week to recover from this adventure - I am just about back to normal now. I did walk to the GP surgery at the end of the road and that took me all afternoon to recover from.
The day I was released was supposed to be my last treatment day at Ward 1. There was a flurried exchange of phone calls between Ward 1 and St Johns, trying to ascertain whether or not I would be in that day (the answer was No). It has now been decided that rather than try to rescedule this treatment it should just be missed out. I am due to have a biopsy next week and fitting in the treatment and the weeks recovery was too much.
I am due at the Western for a biopsy next Tuesday - another night in hospital - so this is the next big event.
I think that is all for now,
god bless
Graham
All by Myself (part 1)
This is a fairly eventful post - life in the Love household has been fairly dramatic over the last week or so.
Last Monday I was due at St Johns for a routine CT Scan - although I wasn't sure which of the consultants had ordered it - turns out it was Bladder specialist Dr Howard.
I have had a cough all week, I noticed it last Wednesday when I was in Ward 1 for treatment. I did mention it in passing, but no one was bothered by it. I didn't seem particularly unwell, so life carried on as usual.
After driving around the car park at St Johns for 20 minutes, stalking people as they walk back to their car, I got to the X-ray Department. When I arrived at the waiting area I found that all four seats were taken. I stood waiting, trying to look pathetic so that one of the sitting relatives would feel sorry for me and give me their seat. Eventually, a passing nurse took pity on me and told me I could wait in the general waiting area and they would come and get me when it was my turn.
By this time I genuinely was beginning to feel tired and a little rough, so I took her up on her offer and went to sit beside the expectant mums waiting for their ultrasound scans.
Sure enough, after a while, I was called back and taken in to a side room. The temperature in the room was warm. The radiologist talked me through the procedure and asked me for an arm, as they need to inject some contrast dye to show up on they scan better. First time round she could not find a vein so she tried the other arm. I was feeling more than a bit rough by this time, so she left me with a cup of cold water and went off to see what was holding things up.
Next thing I remember was water all over my trousers (no not that!), cup on the floor and feeling very cold and clammy. The radiologist came back into the room. I obviously looked like death warmed up because she immediately got a nurse to lie me on a trolley with my feet in the air. They were taking my temperature and blood pressure every two minutes. I think at this time my temperature was high and BP through the floor.
After half an hour or so I had recovered enough for them to take the scan and then I headed back home and went to bed.
I woke up mid afternoon feeling better. I went downstairs and watched some telly until the kids got home about 4.30. I went back to bed and slept for an hour or so. When I awoke I felt as if I was on fire. I dragged myself to the desk beside the bed and managed to find my thermometer.
When I took my temperature it was 37.7 - the amber threshold is 37.5 (two consecutive temperature readings is a red and means a visit to the hospital) so I began to get worried, although to be honest I wasn't really thinking straight.
Helen was due in from work so I waited for her. I dozed again until I heard the car on the drive. I found the thermometer again and too my temperature again. 38.2 this time. This was above the Red threshold (38.0 - Red alert - immediate call to the hospital, day or night).
Helen immediately called the on-call Oncologist who decided that I should go to St Johns where they would arrange for me to be admitted. Helen and the kids ran around collecting things for my stay in hospital while I sat, thick headed, feeling like an idiot.
We got to A & E where they knew nothing about us, so we sat in the general waiting area, with all the sick people. After about 15 minutes we were taken in to a side room where they went through some stuff with us. Again we waited, before they finally took us through to one of the treatment rooms.
This room was stiflingly hot (bearing in mind I had a raging fever at this point) and eventually Helen persuaded them to bring a fan in to cool the temperature down a bit. I think I was a bit delirious for some of the time, but when the fan was brought in I started to feel better almost immediately.
Blood was taken for analysis, along with continual blood pressure, temperature readings (temperature high and BP through the roof this time) and a chest x-ray. All this led them to decide that I had an infection in my lower respiratory tract.
It was decided that I should not be exposed to anyone else, as my immune system was reduced and my blood count was extremely low, so I was shunted off to a side room on one of the admission wards - my home for the next two days.
Again this room was hot, although this one had the advantage of a window, albeit one that could only open three inches. Another fan was brought out and started to cool the room down. I was plugged into a drip to hydrate me and then some industrial strength antibiotics were added to the mix. I am not sure which ones, although I believe they were specialised ones as my blood count was so low (below 3.0 is too ill for chemo - mine got down as low as 0.35, I believe).
Wednesday 9 March 2011
The Golden Years
So the time has come for me to retire gracefully from public life. I have finally taken a bold step and have stopped working. I now have four weeks sick leave, which will probably be extended after that time has finished. I now have to find thinks to fill the void which stretches before me.
I think it was right to keep on working, particularly at the start, but equally so, I think that the time has come for me to finish working (certainly for the time being), hence I officially stopped work last Friday.
I have now had two days sick leave, which seems bizarre since for those days I felt as well as I have for a while. Those two days were right at the end of cycle 2, at the end of the week off. This means that most of the worst symptoms and side effects are minimised and I felt OK (I am actually writing this in the hospital on the first day of cycle 3).
On Monday I spent my day on Facebook, before spending a few hours playing Civilisation V (a relatively new game I have).
Yesterday I spend about an hour and a half on a video call to work - even after stopping work, I can't seem to get away! After that I cleaned out the garage, went to the rubbish tip and then collapsed after doing too much. As it was Shrove Tuesday, pancakes were duly made, which did revive me and then we spent the evening chatting with a friend who was visiting from Newcastle.
Tomorrow I am taking the car to the garage for its MOT and on Friday all the kids are home again at lunchtime (no school in Scotland on a Friday afternoon). so for a week of doing nothing, I seem to have managed a fair amount - well relatively speaking anyway ;-)
I think I might give up drugs for Lent - on the other hand maybe since I have given up work, that will count.....
I received a few comments after the last post, commenting that it seemed more down-beat and not too cheerful. That was not deliberate and I think that I have been fairly up-beat for most of the treatment. I was however, writing that post at 5 in the morning. I don't think that many people would be at their most cheerful at that time of the day.
In general I find the process of writing a blog entry cathartic. In some ways it is a cleansing experience, writing details that I would not necessarily be comfortable talking about (and lets face it, people would necessarily be comfortable hearing about in person).
One thing occurred to me as I went through the process of being signed off. I have probably been at a disadvantage because I still have my hair! I think that people underestimated how much of an effect that the chemo has, because I still have my hair - and look relatively normal. I may have put on some weight, but in the grand scheme of things I still look relatively normal. On the other hand, if I had lost my hair, I think that people would not have been surprised when I went off sick and would probably have been urging me to do it sooner rather than later.
I am sure that I have said it before, but this is much harder than the previous chemo that I had a couple of years ago. I don't know if this is because I have a harsher drugs regime or because my tolerance is lower second time around. I suspect that it is a combination of all of the above.
One new side effect this time is that over the last two weeks I have come out in acne. i feel like a 15 year-old again, with new spots erupting on my face every day - it does make me feel for them. of course mine will disappear when I stop the drugs while there will carry on for another three or four years, but still.....
I think that is all I have to say at the moment, so rather than bore you any more I will finish on a high.
god bless
Graham
(edited to korrect all the speling mistakes)
I think it was right to keep on working, particularly at the start, but equally so, I think that the time has come for me to finish working (certainly for the time being), hence I officially stopped work last Friday.
I have now had two days sick leave, which seems bizarre since for those days I felt as well as I have for a while. Those two days were right at the end of cycle 2, at the end of the week off. This means that most of the worst symptoms and side effects are minimised and I felt OK (I am actually writing this in the hospital on the first day of cycle 3).
On Monday I spent my day on Facebook, before spending a few hours playing Civilisation V (a relatively new game I have).
Yesterday I spend about an hour and a half on a video call to work - even after stopping work, I can't seem to get away! After that I cleaned out the garage, went to the rubbish tip and then collapsed after doing too much. As it was Shrove Tuesday, pancakes were duly made, which did revive me and then we spent the evening chatting with a friend who was visiting from Newcastle.
Tomorrow I am taking the car to the garage for its MOT and on Friday all the kids are home again at lunchtime (no school in Scotland on a Friday afternoon). so for a week of doing nothing, I seem to have managed a fair amount - well relatively speaking anyway ;-)
I think I might give up drugs for Lent - on the other hand maybe since I have given up work, that will count.....
I received a few comments after the last post, commenting that it seemed more down-beat and not too cheerful. That was not deliberate and I think that I have been fairly up-beat for most of the treatment. I was however, writing that post at 5 in the morning. I don't think that many people would be at their most cheerful at that time of the day.
In general I find the process of writing a blog entry cathartic. In some ways it is a cleansing experience, writing details that I would not necessarily be comfortable talking about (and lets face it, people would necessarily be comfortable hearing about in person).
One thing occurred to me as I went through the process of being signed off. I have probably been at a disadvantage because I still have my hair! I think that people underestimated how much of an effect that the chemo has, because I still have my hair - and look relatively normal. I may have put on some weight, but in the grand scheme of things I still look relatively normal. On the other hand, if I had lost my hair, I think that people would not have been surprised when I went off sick and would probably have been urging me to do it sooner rather than later.
I am sure that I have said it before, but this is much harder than the previous chemo that I had a couple of years ago. I don't know if this is because I have a harsher drugs regime or because my tolerance is lower second time around. I suspect that it is a combination of all of the above.
One new side effect this time is that over the last two weeks I have come out in acne. i feel like a 15 year-old again, with new spots erupting on my face every day - it does make me feel for them. of course mine will disappear when I stop the drugs while there will carry on for another three or four years, but still.....
I think that is all I have to say at the moment, so rather than bore you any more I will finish on a high.
god bless
Graham
(edited to korrect all the speling mistakes)
Saturday 19 February 2011
In the Dark of the Night
One of the worst times of day, I find, is when you lie in bed, wide awake in the dark of the night - not the snugly time just after you switch out the light to go to sleep - but the time around 4.00 to 5.00 when you have woken up again and can't get back to sleep.
Your thoughts run away with you - no matter what you start thinking about they rush around in a spiral and end up in exactly the place you don't want them to go. I am writing this at 5.03 on Saturday morning, because I stopped for a toilet break (i.e. I woke up and couldn't get back to sleep) around an hour ago.
I lay in bed for half an hour and then got up with my head spinning, reaching that horrible place, full of dark thoughts - obviously, in my case, I was thinking of the humiliating defeat last week by Wales at Murrayfield (fortunately my main rugby companion has been on school holiday duty this week and I was spared the whole 'that was a dreadful match' conversation, particularly since he is English).
It was my birthday this week - in fact it was my birthday on Wednesday - they day I was at hospital for my treatment. I went to my GP on Tuesday for my regular blood test, then waited with baited breath to see if my blood count had raised from the week before. The call came through on Tuesday afternoon. The blood levels were back up and everything was good to go.
I turned up at the hospital and was plugged in. Every time the drip is changed, they check my name and date of birth - just in case I have forgotten it, I think (or maybe it is to check that no one has sneaked in, hit me over the head and swapped places with me to take my treatment. Hmmm. Must ask about that on Wednesday).
It didn't take long for all concerned to notice the similarity in dates and very sweetly, I was given a box of chocolates (probably from the stash of goodies received from other grateful patients, but I appreciated it none the less). After helping my self to oneof the orange truffles, I passed the box round the treatment area where I was. A little later I was helped with my chocolates by Clairee, The NinjaGeek when she gave up her own birthday afternoon (she was nineteen and I was forty four if anyone wants to know) to visit her poor old dad in hospital, again it was very much appreciated (so thank you Claire).
One of the differences between the Western and St Johns is that the latter is a much smaller unit they have space for around 5 or 7 patients at any one time. They have the same cancer types regularly, every week - Tuesday was bowel cancer day. That meant that when I went along every third Tuesday I would seem the same people every time. There were always people starting or finishing, and there were inevitable delays, but in general the people stayed the same. Also because everyone was being treated for the same thing, with roughly the same everyone knew how it felt and it was going.
On Ward 1 however, this is not the case. The ward itself is much larger and treats a much larger number of patients - roughly around 30 to 35 patients at any one time I would say. and everyone has a different type of cancer, and hence a different type of treatment. I am there all day and see people coming and going all the time. I have now picked a spot, strategically next to the toilet, where I can sit and watch everyone coming and going.
I have one other blog that I follow, from a friend in the south of England, writing from the point of view of a husband watching and helping his wife go through her treatment. Andy and Janine have an inspiring faith and Janine seems to face up to her treatment with unwavering faith in God and a strong sense of humour (possibly slightly dark at times, but well...)
I know that there are time when that faith in God will be shaken and the sense of humour slips (see the start of this post :) but I think I would like to say that both Andy and Janine have been a great inspiration to me.
(I also feel inadequate in the blog posting department, when every other day there is a new email in my mailbox anouncing a new post from Andy).
I do believe that God has me in the palm of his hand at all times - even the dark of the night, but I don't think that this comes across in this blog. To a certain extent this is a deliberate choice - I have chosen to concentrate on symptoms and treatments and miss out the reliance on God.
I know that God can heal supernaturally and sometimes chooses to do so, but I also know that he uses people he has put on the earth, such as the medical and nursing staff (both Christian and non-Christian alike) who look after me, to fulfil his sovereign plans.
Enough of this night-time drivel - this has taken nearly an hour to write and it is almost time for breakfast telly to start.
God Bless
Graham
Your thoughts run away with you - no matter what you start thinking about they rush around in a spiral and end up in exactly the place you don't want them to go. I am writing this at 5.03 on Saturday morning, because I stopped for a toilet break (i.e. I woke up and couldn't get back to sleep) around an hour ago.
I lay in bed for half an hour and then got up with my head spinning, reaching that horrible place, full of dark thoughts - obviously, in my case, I was thinking of the humiliating defeat last week by Wales at Murrayfield (fortunately my main rugby companion has been on school holiday duty this week and I was spared the whole 'that was a dreadful match' conversation, particularly since he is English).
It was my birthday this week - in fact it was my birthday on Wednesday - they day I was at hospital for my treatment. I went to my GP on Tuesday for my regular blood test, then waited with baited breath to see if my blood count had raised from the week before. The call came through on Tuesday afternoon. The blood levels were back up and everything was good to go.
I turned up at the hospital and was plugged in. Every time the drip is changed, they check my name and date of birth - just in case I have forgotten it, I think (or maybe it is to check that no one has sneaked in, hit me over the head and swapped places with me to take my treatment. Hmmm. Must ask about that on Wednesday).
It didn't take long for all concerned to notice the similarity in dates and very sweetly, I was given a box of chocolates (probably from the stash of goodies received from other grateful patients, but I appreciated it none the less). After helping my self to oneof the orange truffles, I passed the box round the treatment area where I was. A little later I was helped with my chocolates by Clairee, The NinjaGeek when she gave up her own birthday afternoon (she was nineteen and I was forty four if anyone wants to know) to visit her poor old dad in hospital, again it was very much appreciated (so thank you Claire).
One of the differences between the Western and St Johns is that the latter is a much smaller unit they have space for around 5 or 7 patients at any one time. They have the same cancer types regularly, every week - Tuesday was bowel cancer day. That meant that when I went along every third Tuesday I would seem the same people every time. There were always people starting or finishing, and there were inevitable delays, but in general the people stayed the same. Also because everyone was being treated for the same thing, with roughly the same everyone knew how it felt and it was going.
On Ward 1 however, this is not the case. The ward itself is much larger and treats a much larger number of patients - roughly around 30 to 35 patients at any one time I would say. and everyone has a different type of cancer, and hence a different type of treatment. I am there all day and see people coming and going all the time. I have now picked a spot, strategically next to the toilet, where I can sit and watch everyone coming and going.
I have one other blog that I follow, from a friend in the south of England, writing from the point of view of a husband watching and helping his wife go through her treatment. Andy and Janine have an inspiring faith and Janine seems to face up to her treatment with unwavering faith in God and a strong sense of humour (possibly slightly dark at times, but well...)
I know that there are time when that faith in God will be shaken and the sense of humour slips (see the start of this post :) but I think I would like to say that both Andy and Janine have been a great inspiration to me.
(I also feel inadequate in the blog posting department, when every other day there is a new email in my mailbox anouncing a new post from Andy).
I do believe that God has me in the palm of his hand at all times - even the dark of the night, but I don't think that this comes across in this blog. To a certain extent this is a deliberate choice - I have chosen to concentrate on symptoms and treatments and miss out the reliance on God.
I know that God can heal supernaturally and sometimes chooses to do so, but I also know that he uses people he has put on the earth, such as the medical and nursing staff (both Christian and non-Christian alike) who look after me, to fulfil his sovereign plans.
Enough of this night-time drivel - this has taken nearly an hour to write and it is almost time for breakfast telly to start.
God Bless
Graham
Wednesday 9 February 2011
Sent Home in Disgrace
Part 1 - A Free Week
It is just over a week since I had my last round of chemo and it has pretty much taken me the whole week to recover form that bout. I was far more tired than I remember from the equivalent chemo cycles in 2008.
It is just over a week since I had my last round of chemo and it has pretty much taken me the whole week to recover form that bout. I was far more tired than I remember from the equivalent chemo cycles in 2008.
I don't know if I am romanticising the last round, or whether it actually is harder this time - probably some of each.
Again, the actual day in the hospital went smoothly, other than a very embarrassing need to go to the toilet every hour. I can't contain it at the best of times, but the main function of many of the drip solutions is to (re)hydrate me. The end result is that the liquids pour out of me almost as fast as they are pumped in to me. Glasses of water and cups of tea just make it all worse, but I have to say that being pampered like that is rather nice, and as for the foot massage (I know I have mentioned it before, but, you know.........)
The aftermath again proceeded much as advertised. The next day (last Thursday) was relatively straight forward, not too sick, but easily tired. Friday more sickly and more tired. Saturday, more more sickly and more more tired.
The other side effects were also present - particularly the constipation. Fortunately the lovely nurses gave me some nice medicine to make it go away. It took time, but eventually relief was on hand.
The week off fairly flew past - going to work every day is such a delight. The only problem is that it seems that I overdid it a bit.
Part 2 - Sent Home in Disgrace
Each visit to the chemo ward is preceded by a blood test. Yesterday I duly went to my GP for my blood test. The blood test checks a number of exciting things, one of which is my White Blood Count (which is a measure of how good my immune system is). The WBC count should be 3 or more. Before the start of the treatment it was 7.2. before the second treatment it was 3.2.
Yesterday, even after two weeks without any treatment, it was measured below the Magic 3 - (2.6, I think), so when the ward called me for the regular day-before check-up they warned my that I may not receive the treatment today. I arrived for my appointment today and was taken in to the ward and stuck with my needle.
The nurses took another blood sample to repeat the tests. The sample was whisked of to be tested again and in the mean time I was given the first drip - a saline solution for hydration. just as that finished, the news came through and my WBC count seems to have dropped further - although I don't know what the actual value was. Maybe, just maybe I should try to take it a bit easier.
As a result I was sent home in disgrace, my head in my hand; shame filled my every pore. I have an extra week off and everything slips by a week.
I have to admit, I just went home and bummed around for the rest of the day - I decided that if I was too ill for chemo, then I probably deserved a day off work - maybe that was wrong, but there you go.
I still get to go back on my birthday - no more news on the campaign for a second birthday - the kids are behind it (they think they will get more birthday cake) but Helen doesn't see the need. I will press on with this though. If you want to add your support to this worthy cause, please contact me. I may have to start a petition on the Number 10 website - I am sure that David Cameron would be very interested in this.
Enough already - my daughter wants to see what drivel I have written this time, so I will finish here. I am not expecting much in the way of symptoms this week, what with the lack of nasty chemicals and stuff, so there may be another longer gap - unless blinding inspiration strikes.
best wishes
Graham
P.S. congratulations to Becky, who has just been awarded a scholarship to study in the US next year. :)
The week off fairly flew past - going to work every day is such a delight. The only problem is that it seems that I overdid it a bit.
Part 2 - Sent Home in Disgrace
Each visit to the chemo ward is preceded by a blood test. Yesterday I duly went to my GP for my blood test. The blood test checks a number of exciting things, one of which is my White Blood Count (which is a measure of how good my immune system is). The WBC count should be 3 or more. Before the start of the treatment it was 7.2. before the second treatment it was 3.2.
Yesterday, even after two weeks without any treatment, it was measured below the Magic 3 - (2.6, I think), so when the ward called me for the regular day-before check-up they warned my that I may not receive the treatment today. I arrived for my appointment today and was taken in to the ward and stuck with my needle.
The nurses took another blood sample to repeat the tests. The sample was whisked of to be tested again and in the mean time I was given the first drip - a saline solution for hydration. just as that finished, the news came through and my WBC count seems to have dropped further - although I don't know what the actual value was. Maybe, just maybe I should try to take it a bit easier.
As a result I was sent home in disgrace, my head in my hand; shame filled my every pore. I have an extra week off and everything slips by a week.
I have to admit, I just went home and bummed around for the rest of the day - I decided that if I was too ill for chemo, then I probably deserved a day off work - maybe that was wrong, but there you go.
I still get to go back on my birthday - no more news on the campaign for a second birthday - the kids are behind it (they think they will get more birthday cake) but Helen doesn't see the need. I will press on with this though. If you want to add your support to this worthy cause, please contact me. I may have to start a petition on the Number 10 website - I am sure that David Cameron would be very interested in this.
Enough already - my daughter wants to see what drivel I have written this time, so I will finish here. I am not expecting much in the way of symptoms this week, what with the lack of nasty chemicals and stuff, so there may be another longer gap - unless blinding inspiration strikes.
best wishes
Graham
P.S. congratulations to Becky, who has just been awarded a scholarship to study in the US next year. :)
Sunday 23 January 2011
This time it’s personal
So I am around half way through the first week of the first cycle of three (or possibly four) of chemo, with the possibility of radio therapy to follow – if you say it quickly, it doesn't sound so bad….
I have had a look back over the most recent set of posts and realised that I haven’t mentioned the drugs I am privileged enough to be receiving (I mean that, all you Americans – the NHS is great).
I am receiving a GemCis combination – Gemcitabine and Cisplatin. For those of you with long memories, (or the facility to scroll down the page) you will notice the similarity of drugs to last time – Capecitabine and Oxaliplatin, and with that similarity in names you will see a similarity in symptoms and side effects.
Both of these are administered as a drip. This means that I have a single day treatment at the Edinburgh Cancer Centre at the Western General. It is an all-day stint, starting in the morning. It starts with a bag of saline solution (1 hour) followed by some steroids. This is closely followed by the first of the Chemo drugs – Gemcitabine. by this time i have had three cups of tea and am ready to go to the toilet – which I am doing more frequently anyway – so I end up taking my pump and drugs for a walk to the toilet with me.
After this I have another saline (or glucose – can’t remember) drip, which takes 2 hours. I have no idea why that one takes so long. After that there is the second chemo drug – Cisplatin. The two chemo drugs take about 15 minutes each and there is about 5 hours of saline/glucose/flushing going on around about them – but someone brings you tea and biscuits so it isn’t all bad.
I have the same anti-sickness drugs and (more) steroids as last time, for three days, to take the edge off the chemo.
Now, of course, I remember that the steroids do really strange things to my sleeping – wide away at 4 am on Thursday morning, and when I do get to sleep, the dreams can be weird and wonderful – maybe just weird though. After that the drugs do kind of take control and it isn’t so bad, although I don’t remember being so tired last time so quickly.
I finished the first round of chemo/steroids/anti-sickness yesterday – and yesterday evening was not much fun. Neither was today at church. The meeting hall was very warm and I kept getting worried glances from Katie (on my left) and Helen (on my right) about the colour I was going – they were obviously worried about my catching an infection, so I can’t complain too much though.
My sense of taste has also been affected. I constantly have a yeuck taste in my mouth and can only taste stronger food – I had fruit salad for breakfast and could only taste the pineapple, although apparently grapefruit also tastes normal. Orange juice on the other hand is just foul. Surprisingly, my sense of smell has been unaffected, Anyone who drives through or lives close to the west end of Edinburgh will not forget the malt smell from the brewery – that was just as fragrant as ever today.
So it is a waiting game again until Wednesday, when I get to go through it all again. I will see how I get on tomorrow at work (yes I am still trying to work, at least part time anyway).
I have just realised that I get to have chemo on my birthday this year (16th of February, if you want to send a presie) – maybe if I play my cards right I will get a second birthday, like the Queen or Paddington, later on in the year – maybe in April, since no-one else in the family has a birthday that month.
Enough – off to watch the telly now.
Gob bless
Graham
p.s. oh yes, I have been constipated too (sorry, just had to throw that in)
p.p.s Happy 18th birthday to Sean
Just a quickie
I found this in the BBC news website, about the build up of computing facilities for the 2012 Olympics – thats even more computers than the Love household!
Wednesday 19 January 2011
The big day
Time passes and eventually we get to where we are going - and this is where I have been heading recently. Today I have arrived at Ward 1 of the Western General for my new chemo treatment.
Yesterday I was at a different part of the hospital - Nuclear Medicine - for a kidney function test. As tests go, it was pretty boring. I arrived (half an hour late, because of the traffic) and had a canula put in. Then I was injected with radioactive Technetium (despite what I said on facebook, it was Technetium). After that I was told to go away and come back in an hour. I was left to wander the wards of the hospital and do anything I wanted, so long as I returned after the required time.
Sure enough, I turned up after an hour. They took a siringe-full of blood and sent me away for another hour. This was repeated twice more before I was sent home. My pee was luminous for twenty four hours (only joking) and that was it - pretty boring really
Today I have returned, this time to the Chemo ward. I was inducted, given my bracelet and enough paperwork to destroy a small woodland copse. They contain all sorts of dire warnings about side effects - more of which in future posts, I am sure.
With the wonder of modern technology, I am connected to the internet, typing this as I am drip-fed (quick glance to check the spelling) Gemcitabine.
My alarm has just gone off, so it must be time for a new drug - Cisplatin, I think. So far, so good though.
They have introduced a new service here in Ward 1- I have just had a foot massage, as I sit here - very relaxing indeed.
The morning in here seemed to be fairly quiet, although I heard other patients and staff say it was very quiet. The afternoon has picked up. this morning there was one other patient, but there are four of us here now and this is one area of one treatment site (there are four here).
I have another few hours to go, so I think I will stop just now, so that I can save some stuff for next time.
Sunday 9 January 2011
Starting over again
The more eagle-eyed readers will undoubtable noticed that the name of this blog has changed. I have been feeling inadequate in the name department after reading the blog of my friend - see below.
ChemoBoy is my alter-ego, and I have the teeshirt to prove it. I might get one of the children to take a photo of me in my superhero outfit.
Now that we have the important stuff out of the way, an update. We had our appointment with the Oncologist on 30th December (and a holiday at Centre Parcs, too, which is the reason for the delay). The result of this is that I have an appointment to start my Chemo on 19th of January.
Again however, we were back to square one with the choices. After everything seemed to be cut and dried, we were given the same choices as before.
There are two definitive treatments for Bladder cancer, according to the Oncologist. They are Radiotherapy and Cistectomy (surgical removal of the bladder). Chemotherapy can be given before either of these options to improve the outcome at the other end.
After a discussion of the options I have chosen to go for the Chemo, hence the appointment next week.
The treatment this time consists of three cycles, and this time it will take place at Ward One at the Western General in Edinburgh. I am sure that Ward One will be familiar to most cancer sufferers in this part of the world, however I managed to avoid it last time, so this will be a new experience for me.
Treatment will take place once a week (a Wednesday) on Week One and Two, with Week Three off. There will be three cycles (of three weeks each) followed by a biopsy and a possible fourth cycle if the tumour is responding. This will be followed by Radiotherapy.
If the tumour is not responding after the biopsy then the prefered option of the surgeons will be to remove the entire bladder.
I am very anxious to avoid this option, if at all possible.
I have been in contact with a friend from my previous life, Janine. She has just been diagnosed with her second cancer - a lump in her neck. First time round she had to have her leg amputated, so I guess she knows what we are going through with the whole bladder removal thing. She had here five year all clear just before discovering this lump. Click here to follow her husbands blog - Musings and Leanings.
I will post again as the chemo progresses.
On a happier note, I am sitting with my favourite Katie, watching The Two Towers and eating Cadbery Clusters :)
How could life be better?
ChemoBoy is my alter-ego, and I have the teeshirt to prove it. I might get one of the children to take a photo of me in my superhero outfit.
Now that we have the important stuff out of the way, an update. We had our appointment with the Oncologist on 30th December (and a holiday at Centre Parcs, too, which is the reason for the delay). The result of this is that I have an appointment to start my Chemo on 19th of January.
Again however, we were back to square one with the choices. After everything seemed to be cut and dried, we were given the same choices as before.
There are two definitive treatments for Bladder cancer, according to the Oncologist. They are Radiotherapy and Cistectomy (surgical removal of the bladder). Chemotherapy can be given before either of these options to improve the outcome at the other end.
After a discussion of the options I have chosen to go for the Chemo, hence the appointment next week.
The treatment this time consists of three cycles, and this time it will take place at Ward One at the Western General in Edinburgh. I am sure that Ward One will be familiar to most cancer sufferers in this part of the world, however I managed to avoid it last time, so this will be a new experience for me.
Treatment will take place once a week (a Wednesday) on Week One and Two, with Week Three off. There will be three cycles (of three weeks each) followed by a biopsy and a possible fourth cycle if the tumour is responding. This will be followed by Radiotherapy.
If the tumour is not responding after the biopsy then the prefered option of the surgeons will be to remove the entire bladder.
I am very anxious to avoid this option, if at all possible.
I have been in contact with a friend from my previous life, Janine. She has just been diagnosed with her second cancer - a lump in her neck. First time round she had to have her leg amputated, so I guess she knows what we are going through with the whole bladder removal thing. She had here five year all clear just before discovering this lump. Click here to follow her husbands blog - Musings and Leanings.
I will post again as the chemo progresses.
On a happier note, I am sitting with my favourite Katie, watching The Two Towers and eating Cadbery Clusters :)
How could life be better?
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