Saturday, 3 December 2011

Three strikes

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

Tuesday, 14 June 2011


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



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

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....

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...

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).
Tuesday afternoon saw Helen and Becky visit me, brining home made scones with jam and cream. they were delicious, but I don't think I did justice to them, since my sense of taste was still poor. After dozing for so much of the morning, I felt reasonably bright by this time, and my sparkling wit and conversation seemed to cheer them up. Apparently I looked a bit like a scarecrow, so as they left I was 'encouraged' by my wife and daughter to have a shower. After this I went back to bed and slept until tea time and evening visiting.

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


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).

If you are really interested, part 2 is here.