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

I'm back

This post has details of the nasty side effects of the drugs I am due to get - if you are squeamish go here.....

Well we went along to St John's Hospital (which I will now shorten to SJH) Chemotherapy department this afternoon, for a meet and greet.


This was another session where they went through all the side effects of the two drugs I am due to get from next week - it is all starting to seem a bit scary........


I have just had a scan through my previous posts to see if I mentioned which drugs I get and I can see them (although maybe I just missed that bit). Anyway, here goes.

I am due to get a regime called Cap/Ox - short for Capecitebine and Oxaliplatin

I start off with Oxaliplatin, once every three weeks, at the chemo department at SJH where they put me on a drip for a couple of hours. They give you a hand leaflet detailing all the side effects. If you don't want to know the score, LOOK AWAY NOW (sorry)

The first one mentioned is diarrhoea - a bit ironic really. Next up Stomatitis or mouth sores and ulcers. Next, the ever popular Nausea and Vomiting (although they give me even more drugs to stop this one). There are dire warnings about infections and how I will be more susceptible to them - reduced blood count and all that. After this, the perennial Tiredness (it is not an excuse to get out of the hoovering, honest).

Finally (for this drug) the interesting one. Neuropathy. This drug affects the nerves (don't sneak up behind me) and this shows itself as numbness or tingling in the fingers and toes. this can be triggered by exposure to coldness and they recommend that I stay away from cold areas, chilled foods and cold drinks, to the extent that opening the fridge to get something out can trigger it. They suggest getting an oven glove to get things out of the fridge(!) and wearing a scarf and coat to avoid sudden gusts of wind, even next week!

It can also affect the nerves in the throat, causing a feeling of breathlessness and anxiety at not being able to breath properly. In fact, it does not affect the breathing in the slightest, but apparently it can feel that way. Scraping the car in winter may be fun and as for frozen peas (that was pea not pee, disgusting boy)..... This lasts for a few days after the treatment ends (so that will be a two or three days every three weeks).

So much for Ox.

Capecitebine is given as tablets every day for two weeks. based on my height/weight I will probably be on 4 - 5 tablets in the morning and the same in the evening - if you shake me I will probably rattle. So how does this one affect me?

Well there is diarrhoea, stomatitis, nausea and vomiting, higher risk of infections, tiredness (sound familiar?) The different one for this drug is Palmer/Planter Erythema, or red and sore patches n the palms and soles of the feet.

Oh yes, and I shouldn't become pregnant as there could be complications !?!

After that I get a week off before it all starts again. Apparently the effects are in the shape of a cosine graph (start at the top, go down in a graceful curve until about day ten when I start to fight off the symptoms and the curve starts to climb again) over the three week period (convenient really). I am not sure however that the graph ever gets as high as at the start.

The risk of infection is stressed a few times. If I get any sort of infection then it is a drop everything and run situation. I have programmed the numbers of the SJH department and the Western department into my phone in case of dire emergencies, so if I am with any of you and I start going blue and drooling at the mouth, grab my phone and call the hospital at once (OK, I am unlikely to turn blue and start drooling, but you get the idea - watch out for me :-) )

So that is it for the chemo drugs,, but they give me three, yes, three different anti-nausea drugs "just in case". And if none of them work I can call them and they will give me another one that they keep in reserve for stubborn patients.

OK that is enough for now. I am off to watch my symptoms DVD (oh yes, they gave me a DVD too).

Someone tell the others they can look back now.