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.

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