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

A blast from the past

Wow, what's this - I thought he was dead or something.



Well no actually I have been living quietly, recovering from Chemo and going to work and getting on with life, content in the knowlege that I was a surviver and had beaten the Cancer.



Very good, you say. So why are you writing this then?



Well...........



It's back.



Except it is not the same - and therein lies a tale, which will no doubt follow in future posts, but essentially I have bladder cancer. After a (new) series of tests, biopsies and consultants I have completely unrelated primary bladder cancer.

As I write this I am waiting for an initial appointment with the Oncology department to discuss chemo for this new bladder cancer.

I will post soon relating the gory details for those of you that are interested, but for now this should be enough to whet your appitite.

God bless

Graham

Endings and Beginnings

The more observant among you will have noticed that it is now march, spring is springing, birds are singing and the sun pokes its head out now and again. You may also have noticed that it it almost two months since I last posted. I just never seem to have the time now – there is always something else happening – normally work or sleep!

So what has happened in the last two months? Well there is a new American President, the worlds banks are slipping evermore into disaster, I have had another birthday and finished my chemotherapy.

I know, I know. I was planning to do a daily post for the last two weeks of the chemo, but after the last session I just started to get on with life, and soon the time just slipped away – you wouldn’t have wanted to hear me going on about it all anyway, but I suppose a bit of news might have been nice.

I would like to thank all the people that have been asking after me when I was too lazy to post – you know who you are :-)

The last post I made was fairly brief, in fact you might say that it was downright rude in its brevity. At that time I was into my last few days of treatment and I could barely stay awake to write.

Looking bake it has all slipped away so fast, and yet the effects are with me all the time, even now.

So some details then, I finished taking the drugs on 27th January and on the same day had an appointment with my consultant, Dr Phillips – coincidence that it was the same day though. I was due to have a colonoscopy on the 29th at SJH. When I saw Dr Phillips, he postponed the colonoscopy as it was too soon after the end of the chemo.

The appointment was rescheduled and the next day I was also sent an appointment for a CT scan, the day after the re-scheduled colonoscopy.

(time passed)

I had my colonoscopy last week, Monday 9th to be exact. I had the CT scan on 10th and finally met with Dr Phillips again on 17th.

The upshot of all of this was that he has said that everything looks normal. During the colonoscopy a few biopsy’s were taken and I am still waiting for the results of them, but the colonoscopist(?) was happy that everything was normal and was just being safe – I did get slightly worried about that, but that has kind of gone as the days have passed I will not get those results for another week or two.

As I said, the next day I had a CT scan. The results of that are that a few of the lymph nodes are slightly enlarged, but are unchanged since my first ct scan last June, the day after my operation. Since they are unchanged Dr Phillips is not worried about them.

I have been released until September, when I will have another CT scan and another consultants appointment.

So, that is the timeline and the outline of what has happened. In some ways, stopping the chemo has been a bit of a damp squib – it was just another day. I took photos of my last dose of drugs (planning to post them here) and then went to work. It has all passed way without anything to mark its passing. On the other hand I suppose that it is good that it has just gone away – it has been such a part of life for the last six months it seems odd not to have to remember to take the tablets. I still expect to have to take them now and again and then remember that I don’t have to.

I still have some of the symptoms – in fact the symptoms are worse now than they have been all the six months that I was taking the tablets.

The main effects now are that my hands and to a lesser extent feet are sore all the time – any time i move them in fact. I can’t do buttons or other fiddly things and my hands have swollen so that I can’t wear my wedding ring – although that may just be because I have put on weight! it is very wearing to have sore hands all the time – I guess that arthritis sufferers have this all the time too, bit this is a different type of pain from that.

I cannot feel properly with my hands -  and when I use my hands i have pain in them – I can feel it just now as I type. My writing is terrible because I can’t hold a pen properly and i just try to not use my hands if possible (which is not very realistic as it turns out). I seem to be more clumsy in general, occasionally staggering and dropping things that I wouldn’t have done before. I guess that these are symptoms of nerve damage (I think they are similar to the symptoms that my sister had when she was diagnosed with freidrics ataxia, although the cause of mine is quite different from hers).

I try to keep quiet about the pain – it is there all the time, but people (including me) get bored with continuous complaints about the same thing. I just try to get on with life as best I can. In the end, if I come out of this with slightly painful hands, I think I have probably won.

I have put on weight (hmmm, I’ve heard that before) since I finished. I have noticed that my clothes are a bit tight around the middle now. I have made several promises to myself (and broken then already) to stop eating so much and to get out walking/running/cycling more now that the days are getting longer.

(another much shorter break)

I wrote the last part one night when I could not sleep. I have just read it again and I actually think it makes a reasonable amount of sense.

Each day is different. My hands are still affected by the cold. I feel the pain every day, but some days are worse than others – mainly when the weather is old or damp (or both). I am hoping that are the weather gets warmer (!?!) the effects will get less.

Having said that, I know I have said it to some people before, but if I come out of this with sore hands, I think I will probably have won.

13 days to go

I have thirteen days of treatment left, assuming I don't miss a day by accident - which sometimes happens at the weekends when our normal routine goes to pot. I have started taking the capecitabene and the steroid drugs- and was awake until 4.30 this morning :-(

We went to see the genetics councillor today, at SHJ - and found out that her son is in Claires' music class - small world.

The main thing to come out of today is that the kids have a slightly increased risk of this, but because there is no family history apart from me, there is not a major problem. They will be offered a colonoscopy in the future - probably in their mid-thirty's so there is no rush.

I am going to get them to check my blood for a particular marker which may indicate something hereditary, but even then the kids won't need to be tested for another ten or fifteen years. I suppose that my brother and sister may be interested, so I will get them the information when it comes to me.

I have started to get the main symptoms now. I have the tingling in my hands and feet when I come into contact with anything cold, like the laminate flooring! obviously I have had problems with sleeping (caused by the steroids). I am hoping that taking the second dose in the middle of the day will mean that I don't spend the entire night awake again. I don't think I have been overly grumpy this time, but is is early days yet - that could arrive any time until the beginning of next week along with the tunnel vision and other side affects.

well, that is enough just now. I will update again tomorrow.

god bless
Graham

The Home Straight

I meant to post this earlier this morning, but ran out of time....

I have been at St John's (SJH) today for the start of my final treatment. Hooray! It doesn't seem like six months since it all started - it seems to have flown by. I hope to post a quick post every day for the next couple of weeks (but don't hold your breath if I don't manage every day).

I guess that I have been looking forward to today for a while (approximately six months in fact!), but as I say it seems to have come round very fast. I suppose that it helps having the time broken up into the convenient three week blocks made the time disappear.

So today was a normal morning at the chemo unit. I was due at 10.00 and left the house just after 9.30, having taken my pre-chemo anti-sickness drugs. These are the ones that disrupt all my normal bodily functions (like sleeping at night and other boring stuff like that!). I got to the hospital and fought for a parking space. It was worse today than it has been - although there was a bonus because the parking charge has been withdrawn as from the end of last year. I did see lots of men in fluorescent jackets checking cars - people seem to just park anywhere and the car park is too small, so they were sticking things on cars on the end of the rows. I don't know if it was a polite reminder or a parking charge (probably the later in fact). Anyway I got lucky (or maybe someone was watching out for me) - I saw someone getting into their car so i just hovered around waiting for them to leave.

10.00 is the first appointment of the day, so I got my favourite seat in the treatment room, and was the first patient hooked up. There are very nice volunteers that bring cups of tea or coffee, so I was set for the morning.

The treatment went as planed and I finished just before 1.00. Normally during the morning, one of the nurses comes round and books the next appointment for three weeks time. It felt good telling them this time that I didn't need to book one.

Having said that, once you are in the system they don't let go (I have an appointment tomorrow with the geneticist to discuss the possibility that my cancer is hereditary. This has implications for my brother and sister (and my parents too I suppose) as well as all my children. I will blog about that tomorrow. Also as I walked out the door, I was handed an appointment to see the oncologist in a couple of weeks time. I will blog about that when I get round to it - this one is 'just to get me into the clinic system'. Like I say, once you are in the system, you can't escape.

To be honest that is unfair. Now that I have been diagnosed I am glad that they are going to keep tabs on me, and I am glad that I don't have to worry about the cost at all. I am so thankful that we have the NHS. If we had been in the US, I would probably had to have sold one of the cars to pay for the treatment. Those NI contributions and income tax don't seems to have been as much of a waste now. I always knew that, but it brings it home.

I can't remember if I have talked about it before, but just as I was starting the treatment and I knew what drugs I would receive, I googled them and worked out how much it would cost. I have two main drugs (I am only talking about the chemo drugs here, not the anti-sickness ones that I get at the same time), and I worked out that the cost of the treatment over the six months would be between 1200 and 14000 (depending on the dose that I received). As I say, thank goodness for the NHS.

That is enough for just now - I may write a sentence or two later, depending on how I feel and I will try to post an update tomorrow.

thank you and God bless

Graham

Jingle bells

It is almost Christmas – and that means that I am just finishing cycle six. It is funny how your point of view changes with circumstances. Most people are furiously wrapping presents, decorating the house (or office), planning (or recovering from) the office night out or any other of the million things that need to be done at this time of year. I am doing the same sort of things, but all of it is overshadowed and underpinned (a bit of overkill there J) by the fact that in June this year, I didn't know if I was going to be here at all.

As it is I am doing just about as well as I could be. It does change your point of view though – I guess there are some people out there who can identify with this, but it is an odd feeling. This is the traditional time of year both for reflection and forward looking. The last six months has been interesting, strange, unsettling, frightening, tiring and probably lots of other 'ings' that I can't think of at the moment, but looking back at the moment the main impression is 'normal' – and that sounds strange.

This has been a conscious decision though. Just after I came out of hospital, before the chemo started, I was just starting back at work. I came home from work one day to take a phone call from my GP. He had just heard through the grapevine that I had started back at work and he was concerned about me. At that time I had just recovered (or was still recovering) from major surgery and been diagnosed with cancer. This was the point where they were still trying to decide whether it was Stage 4 cancer, with a 5% chance of survival and spreading to my lymph system and liver or Stage 2 which had been totally removed, with an 80% chance of it never returning (it turns out it is the second).

Anyway, the conversation went sort of like this:

GP: I hear that you have started back at work

Me: (cautiously) yes.

GP: Why have you decided to g back to work then? Most people would just take the six months off – and I will happily sign a sick note for you.

Me: Hmmmmm, tempting!

GP: Do you want me to do it then?

Me: No. I want to go back to work.

GP: Why?

Me: Well, there are two main reasons (actually there were three - the reason I didn't give him was that I was starting to get bored watching daytime TV, but that was never going to wash). First, My Company have been very good to me. They have not questioned me and have said that I can do what I want (not quite their words, but that is what they meant). I know that there will be times later (in the chemo) that I will not be quite so willing or able to work, so I don't want to take advantage of them.

GP: Rubbish

Me: Well, the other reason is that I want to make life as normal as possible. My family have just had a big shock and we need to get life back to normal. They are going to return to school soon (it was the beginning of August at this time), and Helen is going to start her new job. When they are all getting up and dressed to go to work/school I don't want to be lying around feeling sorry for myself, I want them to see me getting up and putting on my suit and going to work too. It will give me something to aim for too.

GP: OK. That reason is one that I will accept – in fact I think you are probably right.

So I have been working most days (well mornings). Obviously I have not worked when I have had a chemo day (a day in the hospital on the drip) and there have been days when I have not been able to get out of bed – but not as many as you might think. In fact, being in IT there is a lot of stuff that I can do remotely, and indeed there is some stuff that has to be done out of hours (rebooting servers is not normally done during the working day) so I end up logging on remotely to get this sort of stuff done (you people who just expect email to work don't know what goes on in the background).

Looking forward, life is still tainted by this, and it always will. I read a book by Lance Armstrong, who won the Tour de France winner seven times in a row, after recovering from cancer. He says that you never stop being a cancer survivor and I guess that is true. I will always be in the system now. I will have check-ups for the rest of my life, starting just after I finish the chemo in February.

But life has to go on. We are looking at our options for holidays next year (having missed our holidays for the last two years). They are limited by travel insurance – it goes through the roof for a cancer survivor, so much so that we may just ignore it, or only get insurance for the other five. We fancy going to France, close to where we were due to go earlier this year, or possibly somewhere more exotic, but that starts to get really expensive. We haven't decided – and this is unusual since we normally know where we are going to go by Christmas. If someone wants to give us a holiday (including insurance), all offers will be gratefully received!

I am also looking to the day when I start work full-time again (and so is my boss). I don't know when this will be – presumably sometime after the chemo has finished, but I don't know how long after. I have a pile of projects just waiting to get started and I don't have the time to do them just now.

I think that is enough for now.

If I haven't spoken to you or sent a Christmas card, then I wish you a Happy Christmas and a peaceful New Year.

Graham

Party Animals

Hi, back again, just to let you know that I am still alive. Life goes on, just the same.


This last week has been quiet at work - when I checked I found that I still had nineteen days of holiday to take before the end of the year, so I have been takingt a few days of , I think, well earned rest - except that it wasn't restful over the weekend. Parties are kind of like buses around here - you wait ages for one and then three turn up at once!


Our very good friends Graeme and Ulupi Barnett are abandoning us - Ulupi has been acepted for teacher training in Nottingham (where her family lives) so they are due to leave this weekend. They had an open house for their friends and neighbours. We were not sure if we would be able to make it - obviously we have challanges, not least of which are hair appointments(!?!) and School Bugs. Helen had been coming down with her first cold of the year (teachers get every cold that goes around) which flaired into life on Friday evening.


Helen stayed at home, sleeping on Saturday, but the rest of us spent a lovely afternoon at the Barnetts. Ulupi is a fantastic cook and there was some great food for us. We left around 4.30, just as our replacements were arriving.


We headed back to Livingston and stopped off for some petrol. In the petrol station we met two of our other friends on the way to Natalie for her 40th birthday. I took the kids down there, with our friends following. I went back home to see how Helen was (still not well enough to go out) then joined them. There were loads of kids there this time (as Natalie and Bernard have kids, whereras Graeme and Ulupi are dinkys). More fantastic food, along with the kids having a great time, then back home.


Helen had drunk enough Day Nurse to float a battleship and just about felt up to going out, so Helen and I headed off to our third party. Helen's headmistress was having a 50th at her house, and while it wasn't quite a three line whip, it was the 'right thing' to do. In fact we had a great time again, and I met all Helens colleagues. We did leave early though, because both of us were about to fall over, and not from the drink!


On Sunday we had a lie in and then off to our final social event of the weekend, a christening for Emma McGlynn. Emma was born while I was in hospital and the McGlynns were the first people we went to see after I was released. When we went to see them we did not know how bad I was - or rather, how blessed I was - and I sat on their setee in a bit of a daze, watching Becky and Claire cuddle this new life, wondering if I would see my children hold their own babies.

Now, a couple of months and a great deal of prayer on from that Saturday morning, I have been told that my chances of seeing this are pretty much as good as any one. I guess because of this memory I have a bit of a soft spot for Emma. I haven't told anyone else that and I can't remember if John or Lindsey (her parents) read this, but I suppose someone may tell them.

Anyway, Sunday morning we were at St Peter's Caltholic Church in Livingston, at the Baptism of Emma, followed by a nice reception at the Livingston Inn.

So came the end of our party animal weekend.

Symptoms bit - if you don't want the grusome details finish now....

Still here? Ok lets get on...

I have been on my second cycle of chemo for a week now. The Ox drip was fine and the Cap tablets have been ok. I am on a slightly reduced dose this time, 1600mg instead of 2000mg last time. I have not had any particular symptoms again, in the same way as last time. There was the pins and needles effect again, but this had pretty much gone by the end of Wednesday, slightly more than 24 hours later.

One of the reasons for writing this is to help anyone else going through this in the future. I hope that this does not happen, but given that there are more than 30000 new cases of Colon Cancer in the UK each year, this is probably a bit of a forlorn hope to he honest. That being the case, I am puting in details that people perhaps would not normally talk about at polite dinner parties. Maybe that is one of the things that is wrong with life today...


Last chance to leave...............
You can't say I didn't warn you.

Last chance...

One thing I have noticed is that my bowl movements have changed. I have been waking up every night to go to pee every couple of hours, probably three times a night. At the same time I had not been to the toilet properly (rabbit droppings - enough said).

What I think was happening, was that the drugs syphon off the liquid leaving the pellets. One of the functions of the colon is to do this, and then move on the solid waste using infinitesimal muscle contractions.

One of the anti-sickness drugs (I have never mentioned them, but I have four different types and amounts to take at various time through each cycle) is the main suspect at the moment. I reckon that it is reducing the muscle spasms which cause sickness and at the same time is also reduceing the 'waste management' function.

I am watching the Secret Millionaire at the moment and I am distracted by the programme. I will not write about this at the moment - the subject is not appropriate for this post, but I guess that my next post will be on a different subject, and I want your comments on it.

I think that is enough for now,

cheers

Graham

Return of Count Dracula

I guess the headline from this week is that I am still here J

Actually that is not true – the headline from this week is that Dave and Libby (from Kings Church) got married. I just form a sub-plot of that, and that is the way it should be too, but more of that later.

So, anyway, the last time we met I had just survived my first dose of chemo. This was the Oxaliplatin drip, with the tingling fingers. I have to say that for that Tuesday afternoon I felt pretty grotty, and lay about on the settee feeling a bit sorry for myself. The next morning was my first dose of Capecitabine (maybe I did mention it last time). I don't think I had too many symptoms, after all. Obviously for the first couple of days I was taking some pretty powerful anti-sickness pills (although you wouldn't think so from the size of them). I was able to go to work every morning, although I do go home at lunchtime (and then log on remotely!) I have been getting tired in the afternoon and evening and my mouth does taste a bit goppy, kind of metallic – not quite bad enough to need more anti-sickness, but contributing to a general low-level grot (that is twice I have used the word grot or grotty and I will try not to repeat my self anymore).

As I mentioned, the highlight of the weekend was a trip down to Newcastle for the wedding of Dave Hill and Libby Cant. Dave works for Kings Church Edinburgh and is one of the nicest and most genuine blokes I know. Libby is just lovely and they couldn't be better for each other. Libby comes from Newcastle, so we went down there for the wedding. We decided to stay overnight and booked into a Travelodge. It wasn't posh, but then we only slept in the room.

We left at about 9.30 and I drove down the A1, listening to crackly Radio 5 Live and the coverage of the Beijing Olympics and the fantastic Super Saturday golden streak (four gold medals and a clutch of silver and bronze). We checked in to the hotel (six of us sneaking in to one room), switched on the telly and watched the reruns of the golds while we got changed.

The wedding was lovely. The church was nicely decorated and the service was really nice. Matthew Clifton-Brown prayed for the new couple and Dan Hudson spoke during the service.

After the service everyone went to the local Memorial Hall where there was some food – really nice, just as you get there without having to hang around for ages while the photos were taken. The speeches were not too long or boring – in fact they were very good, and I now have a lot to live up to! – but I suppose that I have several chances to get it right.

There was more delicious food as the evening carried on, with a Ceilidh band providing the music. I managed to have one pint, and danced twice – after that I was exhausted. We left at the end and made our way back to the hotel. We all crashed out and apart from Becky (who had to sleep on the floor in a sleeping bag) slept till morning. In the morning there were more golds in Beijing and breakfast with Errol and Michelle Minnot in the Little Chef. We left and started northwards. We stopped off at Holy Isle, which is one of my favourite places. It is so peaceful and tranquil. I have always fancied staying there, just to see what it is like when the tide is in and the island is cut off.

We spent an hour or so there before going back over to the mainland. We stopped just in the mainland side of the causeway as the tide was due to come in.

If you have never been there when the tide is coming in, it is worth while doing so. The sea comes in so fast – the sand is very flat and it is easy to get caught out on the sand – Claire and Angie almost managed it, and there were a couple of people further out!

There is also always one car trying to get across at the last minute, driving across the road as the tide comes in. Sure enough, one car came back with its wheels under the water – Errol has pictures. As they drove past the crowds on the road the driver and passengers looked very sheepish. J

The journey back to Edinburgh was uneventful and we got back just at teatime.

The Hospital had asked me to go in for a quick check-up a week after the first treatment. This is the only time they need to see me, just to make sure that I am not having any seriously adverse reaction to the drugs.

I went in on Tuesday, and they immediately stuck a needle in me and proceeded to take pints of blood from me. They went through a list of symptoms and checked that I was ok. They seemed surprised that I only had the pins and needles for 48 hours. Everything seems to be ok and they sent me home with a cup of tea – in fact they offer you a cup of tea as soon as you walk through the door, even before I had seen any of the medical staff – they did the same last week, so I guess that is the way they work down there.

There is a lovely lady called Agnes, who volunteers there every Tuesday. She is a member of East Calder Church and brings in home-made cakes and stuff for patients and staff – this is lovely and just shows how much people care.

So, after a week and a half of drugs, I am doing ok. I get tired in the afternoon, particularly if I push it during the morning. I am ok if I finish by lunch time, but one day this week I stayed on till around 2.30 and I felt it later that day.

This has taken me a long time to write – I stared it much earlier this week, and I apologise for the delay. I am slightly surprised but very pleased that people are reading this to keep up to date – it is quite humbling actually.

I will post another entry soon – about Helens first week at work as a teacher.

Thanks

Graham

First treatment

Yesterday was my first chemo treatment at SJH. Helen and I arrived at about 10.00 yesterday and went down to the chemo unit. Don't remember if I have desctibed the unit - small but perfectly formed.

The unit is buzzer controlled and leads in to a comfortable waiting area, with a tv, internet, small kitchen and settees. We arrived and were given a seat and a cup of tea while I completed more paperwork. I was also given some anti-sickness pills. After about 10 minutes we were called though to the treatment area, along with about four other patients. The patients get given comfortable seats and the partners (most people had brought partners to wait with them) get normal chairs.

I was hooked up to the drip and the first one they gave me was a glucose drip - not sure why, but there you go. That lasted about 10 minutes and them they hooked up the Ox (see previous posts for full details of Ox). That takes about two hours to drip through and finally they gave me another glucose drip to flush every last drop into my system.

They kept feeding us with cups of tea, so much so that I had to get up and go to the toilet half way though, as my bladder was about to burst. All the drip machines have batteries so it is just a matter of unplugging and wheeling the stand along the corridor.

While I sat with the drip my arm was wrapped up in an electric blanket - for the full two hours, a bit odd really - to keep me warm. As the drip dripped, it felt as if my arm was filling up. By the end of it my arm felt quite odd - stiff, slightly sore and very sensitive to the cold.

After the second glucose drip we were given a large bag of drugs to take home, including the Capecitabine (the other chemo drug) and three different anti sickness drugs.

For those of you who are interested I have Granisetron and Dexamethasone to take on the day I have the Ox drip, more Dexamethasone (different dosage) to take for the three days after the drip and Domperidone to take as and when.

I am on 2000mg of the capecitabine twice a day, four lovely peach coloured tablets (I am not sure that the colour has any effect, but there you go) to be taken just after a meal, twelve hours apart - they are quite strict about that. I have to have this tice a day for fourteen days for 8 cycles. Now that works out as 224 doses and I have had my first (not that I am counting).

We left the unit at about 1.15 and drove home. Helen suggested that I drive as she would not be around for any of the other treatments (she started work today - not a happy bunny), so I drove home very gingerly, but safely. I also was wearing a pair of ski gloves and a scarf, so I was looking a bit of a pillock, standing in the entrance of SJH getting my parking ticket wearing my ski jacket and gloves and a woolly scarf - the reason I was dressed like this is described below. For those of you that I see, I will probably be wearing this sort of get-up for the couple of days after the OX drip, every third week, wednesday to friday, whenever I go outside.

Touching things is odd. One of the main side effects of the Ox is the sensitivity to cold. If I touch almost anything colder than my body, even at ambient air temperature for more than a second or two I get pings and needles in my fingers and hands. The effects appear within about two or three seconds, but dissappear just as quickly after I let go. They say that I should not go into the fridge (I did sneak in for some mik to go in my tea though).

The effects are most noticable if I tough metal, although I have noticed it touching other things too. This, along with tiredness, was the main simptom that I felt yesterday. I am not as tired today and the pins and needles are not as bad today either. The reason for the scarf is that the drug affects the nerves - hence the pins and needles, and can affect the nerves in the throat - leading to the sensation of my throat closing up and wheezing. The fix for this is to keep warm - hence scarf and gloves - drink something warm - hence the three cups of tea at the hospital - and get out of the cold.

I had a dentists appointment today, and braved the outside world, walking down to the surgery. I took my scarf, but didn't need it. I was fine walking, although the weather today is not too bad (the sun is out!)

So that was my first chemo dose. I have to go back for a one-off appointment next week, for them to check that I have not had any drastic side efects, but that should be a five minute job and I am free now for three weeks - appart form the hundreds of pills I am taking every day.

I will try to keep you up to date as I go along.

God bless,

Graham

Chemo dates

This is a quick post. I have got the dates for my chemo - I am starting on 12th August, in Livingston, rather than the Western in Edinburgh.

This is good news as we was a bit worried how I would get to and from the hospital - not actually the going to the hospital, but rather the getting home from the hospital after I have been pumped full of drugs.

St John's in Livingston is five minutes from home and if the worst comes to the worst I could get a taxi there and back (Helen was suggesting that I cycled, hmmmm).

One of the consultants at the Western has a clinic at St Johns every week, so this is the best of both worlds - same treatment as at the western, with full access to the specialist nursing team and oncologists, but five minutes from home.

The treatments will last for 8 cycles of 3 weeks each, back to back, giving a total of 24 weeks (23 actually). Each cycle starts with a day in hospital - a tuesday as it happens. This is followed by tablets for two weeks and then a week off, before starting again. So, eight 3 week cycles less the last week makes 23 weeks. That means, according to my calendar that the last treatment will be on 19th January, which is a bot earlier than I was expecting, so that is a bonus too.

that is enough from me now though so

bye

The Drugs Squad

Today was my first meeting with the oncology team that are looking after me. It was a nerveracking meeting. For the period before and just after my operation the news just seemed to get worse every time we spoke to someone.

We started off with the diagnosis of IBS, quickly moving on to this tumour, briefly visiting a twisted bowl along the way. Then we were told that it looked thike there was "lymph node involvement" - an odd turn of phrase, but one I ahve read in other places. Then there was the liver, which also seemed to look as it was infected.

This was the situation when I left hospital, about three weeks ago. Then, about two weeks ago the MDT meeting took place (see the last post for more details) and the news got better. Now while this was great - no liver problems and no lymph node involvement - the thing that stuck in the back of my mind, and Helen as well, was that if the diagnosis could change once, then it could change again....

So it was with a certain amount of trepidation that we turned up this morning at the Edinburgh Cancer Centre, part of the Western Infirmery. We got there in plenty of time, and sat in the waiting area. This was not too bad, although Helen did compare it to an old peoples home - certainly, we were the youngest there by a good twenty years.

After a while one of the nurses came and introduced himself to us and decided that I needed to be weighed. I have lost about a stone in the last month, but if pressed I would not recommend this as a weight loss plan.

After an hour and a half, getting more and more fidgety all the time, we were called though to see the registrar. She was very nice and almost imediatly put us as ease by confirming what he had been told earlier - after that I dont think we heard anything else!

It is not actually true about not listening, but it was a massive relief.

So, this is how it is. The medical staff are as confident that the cancer has been removed as they will ever say - they will never commit 100%, but as close as. Their recommendation is that I have chemo to wipe out any remaining rebels.

They want to do a full colonoscopy, but probably not until after the chemo - it is too soon just now, on account of being cut up the middle - and it is probably not a good idea to do it during the chemo. Having said that they are sure that there is nothing left. If there had been any more tumours or infection there would be some polyps, but there was no sign of anything.

We were given a bit more information aboout the drugs as well. The set of drugs I will have is given to most colon cancer patients up to the age of about eighty. It is (apparently) one of the mildest chemo diets, so I recon that if an eighty year old can survive this, then I as a fit(ish) forty-something should be able to cope. Maybe that is a bit optimistic - maybe it is just plain hopeful. I guess this is a journey that I am just starting - you are welcome to tag along via this blog.

Thanks you for all the comments to the first post - it is encouraging and humbling that so many prople are praying for myself and Helen. If you wouldn't mind praying that helen has peace about her new job that she starts in a few weeks - what with having to look after me all day, she needs a bit of TLC for herself.

I will post again when I have more to say (you may no think that is a good thing, but there you go)

god bless
Graham

(p.s. the title was inspired by Becky)

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