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

Beginnings

Hello and welcome to my blog. This is the first blog I have done (other than a boring internal work blog - but that is not really worth mentioning ;-) )

The reason behind this blog is to update friends and family (and anyone else interested) on my treatment for Colon Cancer.

Since this is the first post it will probably be longer than most of the others. Also, I should probably include a synopsis of how we got here, so here goes...

Early in 2008 I started suffering from stomach cramps and what I think I will call 'blockage' (I am trying to be polite here). After several visits to my GP and tests in hospital I was diagnosed with Irritable Bowl Syndrome or IBS.

Towards the end of June 2008 this suddenly got worse and I was rushed in to the Edinburgh Royal Infirmary. After several tests the surgeon told me I had a twisted bowel.

"OK", I thought, "that doesn't sound too bad", although it did involve keyhole surgery to sort it, but I should still be out in time to go on holiday.

During the surgery, the surgical team realised that it was not in fact a twisted bowl, got out the big knife and split me up the middle. They removed a tumour about the size of a satsuma, along with several inches of colon on either side and then proceeded to staple me back together.

This obviously knocked the holiday plans on the head and I have spent the time since recovering from the large and impressive scar up my stomach.

The day after the surgery, the consultant who performed the operation told me of his findings and sent me for a CT scan. The scan seemed to indicate some possible infection of the nearby lymph nodes - bad news.

After that I was sent home to recover (and kind of left hanging with this diagnosis).

After a week or so there was a (scheduled) Multi-disciplinary Team or MDT meeting of the medical staff (but not me!) with the surgeon, radiologist, oncologist and pathologist puting in their tuppance. During the meeting on further inspection of the pathology and scans they decided that the lymph nodes were not actually affected/infected - good news.

I have to say, at the time of this post this diagnosis is still second-hand from one of the specialist nurseing team and I have a consultation with the oncologist later this week - no doubt I will blog about that meeting later.

So much for the physical side of this.

I am a committed Christian and an active member of Kings Church Edinburgh. One of the first people we told - in fact we turned to him when I was admitted to the hospital in the first place - is the lead elder and our good friend, Matthew Clifton-Brown. He and the church have been an amazing strength for myself and family.

I want to thanks Errol and Raph, Errol for looking after us and Raph for organising the prayer and fasting rota.

This has been a roller coaster ride for both myself and Helen (my wife). I have gone from being sick (physically) to mainly relieved that it wasn't serious (twisted bowl) to very unhappy (tumour) to very, very unhappy (spreading) to overjoyed (not spreading) to slightly anxious (just about now, waiting for the consult on Thursday).

I will admit that I have had some dark thoughts at times. The first trip I made after escaping from hospital was to see some friends who had just had a baby (girl, if you are interested). I sat on their settee (exhausted) and watched my children cooing and cuddling this new life. Both of my older daughters (15 and 16) decided that they wanted one.

As I watched them I had the dreadful thought that I may not (indeed possibly/probably) would not see them holding their own children. This was horrible and I have not admitted this to my wife yet (I guess she knows now though). I sat on the chair not saying anything and feeling (just a bit) sorry for myself.

As the days have gone on, particularly after we got the news from the MDT meeting, my spirits and my faith have been rising. I have had several pictures given to me. The most encouraging one from my friend Errol (from above) who felt he had a picture of me playing with my grandchildren. Others have given me similar pictures and prophecies about complete healing from God (possibly using the work of the medical teams, I am not so super-spiritual that I don't admit they work miracles too).

Matthew and the church also have faith for complete healing. I guess if I was honest (and I suppose I should be or there is no point to this) I hope that they are right, but I don't have that level of faith myself. I am getting there, but I am not quite there yet.

I will confirm this later this week, after the consult, but I am expecting to be told that I will have to have chemo. In fact I have even been told which drugs they will use and how long it will last (the drugs have really long names that I can't remember and it will last 6 months).

I guess this is the current situation and that these are the salient points of this sorry tale so far.

I will try to keep this blog up to date as the chemo progresses, but I am not naive enough to think that I will be able to do this all the way though. If it gets to the point that I can't write I suggest that you check out Helen's Facebook site as I am sure she will update that as we go on.

There will be loads of people who help me though this, and I will try to mention them as I go along. I have mentioned some of them earlier (Matthew, Errol, Raph) but the most important person is my wife, Helen. She will face the worst of me and will have to mop up the bits (literally as well as metaphorically). She deserves your prayers as much as I do - in fact probably more.

thank you and god bless

Graham