Near the end of the road now

[megascops]

My mother (73) was diagnosed with suspected PC in July last year, 15 months ago. The diagnosis was confirmed in August and she had an unsuccessful op in September (13 months ago). In the last month she has gone downhill quite dramatically and I don’t think she is going to be around for that much longer as she has lost what was a very strong will to live. So I thought it would be a good time to post a few thoughts for others who might be going through the earlier stages of this unfortunate experience with their loved ones.

The worst 2 days for the illness were the one she was diagnosed and the one the operation was unsuccessful. They were pretty hard to bear. My father and her brother also died during the period, so there has been other sadness.

However we have had many good times over the last year. We have been on holiday to Norfolk, Dorset, Lancashire, Colombia (17 days), the Channel Isles, Poland (10 days) and Norfolk again. We also went to Aintree for the Grand National, and she not only backed the winner of the National, but of three other races. She has caught up with many old friends, tidied up her research on the family history, cleared out the attic, completed her tax return and done many other things, like seeing a new baby in the family, her step great grandson. She went to the opera at Covent Garden but I managed to escape that trip, there’s got to be some limit to how much one can be expected to do!

Just because you are terminally ill does not mean that you can’t do a lot of things in the limited time available, and have moments that will be cherished for ever.

Some of these holidays were during chemo, including the one to Colombia where she saw some fantastic rainforest nature reserves on a privately organised trip and which meant postponing one treatment. She was given great hospitality and consideration in that very beautiful country. And yes she went against medical advice and without proper insurance cover, and it was well worth the risk! Its not a big issue, the insurance just excludes anything relating to the condition, and you have to pay yourself if that should arise, but if you break a leg or lose some luggage you’re still covered.

The chemo (she had Gemcitabine and Cisplatin) is really not too bad to start with, except for the inconvenience, but it does get worse as it goes on and by the end of the course the side effects have built up quite a bit. That being said most of them can be treated. Much of the time it is hard to know which things are caused by the cancer and which by the chemo.

Anyway the chemo was worth it as the cancer stopped growing whilst she was on chemo, giving valuable extra time, even though once the chemo stopped it came on with a vengeance after a couple of months.

The standard of care from the NHS has been outstanding on the whole. When she first went into the local hospital it was a pretty mediocre service, but even there some individuals were outstandingly good, and once she was transferred to a larger hospital with a specialist department the care was excellent. The chemo people (at a different hospital again) were fantastic.

More recently the burden has shifted to the GP and the community nurses, and they have been outstanding. On several occasions the GP has rung up unexpectedly to ask how she was, or even popped in to see her without being asked. The Macmillan lady has been a great help and recently the St. Barnabus people have started helping.

There has been a lot of discomfort but very little severe pain, and nothing to stop her continuing to enjoy life most of the time. However she has a great fear of severe pain at the late stages, which is a bit distressing. To address this they have given us a small supply of morphine which can be used if there is a sudden attack of pain, though it has not yet been necessary to use it.

She’s dying now in the next room, and I am crying a little while I am writing this. But if you have got this far you will hopefully understand that this post is not a cry for sympathy, but an attempt to throw a little comfort to others who are facing the same journey. I have had some fantastic times with my mother this last year, which if she had lived another 5 or 10 years I doubt we would have got round to doing these things. There’s no point in denying the inevitable, but with a positive attitude patients with this disease can certainly live a little bit longer and have a much higher quality of life during that period than you might think.

And don’t forget the green tea. I don’t know whether it helps or not, I strongly suspect it may do, it has no nasty side effects and it doesn’t cost the NHS anything!

Edited October 27, 2008 by megascops

[lorraine]

Hello

I just wont to say thank-you for your story,i feel all doom and gloom at the moment and reading about all the things you and your mum have done has really lifted me to get out there and make sure my dad does all he can.

Thank-you

Lorraine

[megascops]

My mother died peacefully at home last week the day after I posted. I was surprised she died so soon, she had a strong will to live but once she started to go then she decided to go quickly.

It was very painless. The main suffering was her fear of a painful death which did not happen at all, so the lesson here is not to let your loved ones suffer the anguish of the fear of a painful death, because at least in our case this did not happen, and it's a pity to me that she suffered that unnecessary fear. There are drugs if necessary to relieve the pain in any case.

[gillvb1]

Megascops, I am so sorry to learn of the passing of your Mum. You responded to a message I had left about Chemotherapy for my Dad and I had really drawn some vital advice and information from you which I shall refer to whilst my Dad undergoes his treatment. I am so sorry that your Mum left so unexpectedly but then she didn't suffer the pain she feared. You certainly had a fulfilling year and you have given inspiration to those who may be feeling at a loss when their relatives are diagnosed with this awful illness. You are brilliant and I can't thank you enough for providing me with such a frank account of your Mum's past year and chemotherpy treatment - It has really helped me to understand what I may be presented with. Words fail me but admiration for you fills me - Love, Gill XX