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.

tired

tired

10 days

Another quick post - a quiet day yesterday, did nothing, but still exhausted. I did kinda lie around all day. Most of the kids disappeared to friends or shopping in the town, so that was just as well really.

Helen was out with friends yesterday evening, so I was fighting to stay awake at the end of the day. She was down in Berwick-upon-Tweed and didn't get back until around 1.30 in the morning - dirty stop-out. It all means that I woke up as tired as I went to sleep.

Probably go for a sleep later this afternoon, but I prefer not to do that, because I am afraid that I won't get to sleep tonight.

more soon

Graham

Friday - 11 days to go

(but I am not counting - honest)!!!

After being awake all night Tue - Wed, the last two nights have been fairly settled, albeit I have been worried that I would not get to sleep. In the end though I managed to get two full nights sleep. I am still waking up in the morning almost as tired as I have been going to bed, but there you go.

I have taken this week off work and I am glad that I have done so. I am not sure how I would be getting through the day. I suppose that it is not so much the during the day bit, but rather how I would feel in the evening and also by this time at the end of the week. I don't know how much I have in the way of energy reserves.

I have one more dose of the steroid to go - sometime this afternoon, For the fist four cycles I was taking it at the same time as the evening chemo dose and I that, I am not sure, was one of the main cause of my sleeplessness at night. When I saw the consultant at the half way point, he suggested that I took the steroid during the day - not quite so convenient, from a remembering point of view, but certainly better that being awake at 4 am. In general, when I have managed to do so, it has made a difference as you can see from above.

I am not looking forward to this weekend, as I come off the steroid. I think there are withdrawal symptoms from this. I am generally very tired for the weekend and into the Monday and it has really been the Tuesday of the next week before I start to feel a bit more human again, but this is the last time (just keep repeating it to yourself, Graham).

that is enough for now,
back soon

God bless

Graham

Windows 7 beta

I have been testing the latest version of Windows recently - Windows 7, which has been released as a beta (test version), available form the Microsoft website here. It should be available for download for another week or two. I have in installed on a laptop and a desktop at the moment and have found it to be mainly stable. I have had one or two problems, mainly to do with drivers for older legacy components.

Other than that, I have found that I like the new interface. It is not ready to test as an upgrade to a working system, but if you are fortunate enough to have an older machine lying around gathering dust then it may be worth having a go with it.

It seems to be reasonably stable, and in line with Microsoft claims, does not seem to use as may resources and Vista. Perhaps this is actually vista as it should have been, as some commentators have been saying.

The laptop has a core duo (not a core 2 duo - this was before they were released) and 2GB ram. The desktop has a P4 processor, although it again has 2GB ram. As with vista the more ram that you can add the better. I think the recommended minimum for Windows 7 is 1GB and a 1GHz processor (so some PIII processors may just scrape in there, but I don't know that I would want to run Windows 7 with a PIII).

A would suggest that a more reasonable minimum would be a P4 processor (preferably a dual core P4D) or above and 2GB ram - about the same spec as my test desktop, which is quite happily streaming music from the laptop and playing it (it is using 14% processor and 36% memory).

If you do decide to take the plunge, leave some feedback.

happy testing

Graham

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