Monday, 23 February 2009

Dying with Dignity.

There has been much coverage in the media of late of Jade Goodys terminal cancer diagnosis - and much comment on how she is dealing with it. I have read several requests for her to 'die with dignity'.
Why should we, those of us with terminal cancer, die with dignity?
Whats wrong with shouting and stamping your feet and complaining at the injustice of it all? Or whats wrong with wringing every single last bit of enjoyment out of life before we finally pop our clogs? And yes, fairly publicly if we want to. We're not dead yet after all.

Whats wrong with using your situation to highlight awareness of your particular disease? Or maybe even campaign to help others who, in the future, may be in the same position as you?

The truth ofcourse is that for many people seeing, or reading about, someone who is approaching the end of their lives is an uncomfortable experience. It reminds them of their own mortality. Especially if its a young person.

Death, it seems, is still the final taboo. Especially an impending one. Some would prefer us, once we have been given that final sentence, once that dreadful word 'terminal' has been used, to retire behind the sanitized walls of a hospital or hospice and die quietly. And unobtrusively.
That is supposed to be 'dignified'.

But what 'dignity' is there in that?
What dignity is there in simply giving up, accepting your fate, quietly acquiescing for fear of upsetting somone?

The true dignity in death is doing exactly what YOU want to in your final days with your family and loved ones. Maybe quietly, maybe going out with a bang - but it must be what YOU want and not what others expect of you.

Monday, 16 February 2009

Welcome to Noah - and Happy Birthday Catherine !

Noah was born at 11pm on 11th February, a little brother for Grace and new son for Sarah (Graces Mum) and her partner Tom. And he is as cute as a button ! Grace ofcourse is absolutely thrilled to have her new baby - even if he is a boy and not the kitten she was secretly hoping for !

Valentines Day was pretty special in this house too - it was Catherines 18th birthday. And mainly consisted of having a house full of giggling teenagers getting ready for their big night out. Honestly, the house smelled like the ground floor of Rackhams. Apart from the ritual handing over of cash Martin and I played little part in all the activities but apparently a good, and safe, time was had by all.

For the past week or so I havnt been at all well. Nothing to do with my cancer, I picked up one of those nasty virus' going round and ended up with a throat/ear/eye infection. It responded quickly to anti biotics fortunately despite my GP being quite worried. I forget that Im still pretty immunosuppressed due to Sutent and any infection can cause problems if it gets a hold. Anyway Im fine now.

More than fine as a matter of fact. The pain I was getting in my side has gone. Completely. The tumour is still there and feels and looks roughly the same size but it just doesnt hurt any more - even if I prod and poke it quite roughly. So I was really interested to see what Dr P would think when I went to see him yesterday.

The clinic was manically busy, as it usually is on a Thursday morning, and I was called in to see his senior registrar (a good sign). He listened whilst I explained how the pain had just disappeared and said "Yes we hoped this might happen" (So did I !!) The MDT meeting hadn't really come up with any answers as far as a review of my scans was concerned but it had decided the pain I was getting, the same as the pain I used to get under my armpit last year, was due to an 'infarct' in the tumour. Sutent works by cutting off the blood supply to tumours and this can produce these 'infarcts' and thus the pain. He finished off by saying "We're all really pleased with you - your blood results are excellent" and gave me my prescription for cycle 11 (11 !!) of Sutent.

So - bloody good news all round. And a BIG relief for all of us.

Tuesday, 3 February 2009

News Flash !

Press release 3/2/2009


Patients in England with advanced kidney cancer could soon join their Welsh counterparts in accessing a new drug.
The National Institute for Health and Clinical Excellence (Nice) published revised guidance on the drug Sutent (sunitinib).
Similar advice published last year rejected Sutent for use on the NHS, alongside Avastin (bevacizumab), Nexavar (sorafenib) and Torisel (temsirolimus).
Charities expressed outrage at that decision, saying it left patients only one treatment option - interferon - to which many people do not respond.

Now Nice has revised its guidance, saying Sutent should be approved on the NHS in England but still rejected the other three drugs.
All the guidance is still in a draft stage and is subject to consultation although Nice hopes to issue final advice on Sutent in March.
The medicines do not cure advanced kidney cancer but they can extend a person's life by a matter of months.
Every year, up to 7,000 people in the UK are diagnosed with kidney cancer.
Of these, around 1,700 patients will be diagnosed with advanced kidney cancer and at any one time around 3,600 people are living with the advanced form.
Andrew Dillon, chief executive of Nice, said: "Having decided that one of these treatments should be recommended for use in the NHS, we felt that it was in the interests of patients to get that advice out as quickly as possible. today that Sutent was in the final stages of draft guidance whereas the other drugs were at an earlier stage."

Monday, 2 February 2009

Wake me when spring arrives !

Snow has hit most of the UK and as usual here the country has ground to a standstill. I managed to drive the short distance to my GP's surgery, very slowly and carefully, in order to see the chiropodist about my corn. Yes, its back. And this time it has a little friend with it. So this time I had 2 holes hacked in the sole of my foot.

To be honest it didnt really bother me as it did prove a slight distraction from the pain Im still getting in my side. Basically the pain patches arn't working. And the paracetamols Im taking just arn't strong enough. I cant sleep. Every time I turn over I wake up with the pain - and also wake Martin up with my groaning. This is getting a bit wearing to be honest. Ive been in pain before, sometimes quite severe pain after an operation, but Ive always known it was temporary - it would get better. This time I dont know that. And Im worried its going to get worse.
So yesterday I called Mary and told her I was still in considerable pain. After consulting with a doctor at the hospice she suggested I try Tramadol MR. Now Ive had Tramadol before and its a very good pain killer but it can make you feel very 'dopey' and this is something I really want to avoid. But the MR (modified release) tablets work slowly over 12 hours and should prevent that. At least thats the idea.
I took the first one yesterday morning and within half an hour the pain had gone. Within another half an hour I felt like I was drunk ! Very very sleepy and slurring my words a little ! And very sick. I had no choice but to take to my bed where I slept for 3 hours - and woke feeling a little better, but still sleepy and nauseous. I took another one last night and slept straight through to the morning which is most unlike me - but I still feel very sleepy and sick now. My next dose is due in an hour and Im wondering whether to take it or not - maybe my body just needs a couple of days to get used to it? It is a great pain killer but I cant spend the rest of my life asleep !
(ps...Ive just taken it so I may be hibernating for the rest of the day!)