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
Tuesday, 14 June 2011
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...
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