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

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).

If you are really interested, part 2 is here.

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)

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

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.

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. :)

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!

Virtual London 2012 Olympics off starting block