15 years on (continued)

It's great that your onco rang you and told you all the details. It proves he cares and is still in your corner.

The hospice sounds a good idea to get your pain sorted, and I must add, my own oncologist (another good guy) is a big supporter of Enzalutamide.

He gave a talk on it a PCUK event at Sunderland AFC just two months ago.

Good Luck with everything.

George

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Bri ;-)

To Infinity and Beyond

Firstly thank you for the kind messages, but believe me I am no hero although if my story can give some inspiration to others all to the good. I realised years ago that one has to live life to the full whilst one can. In my younger early days in the Army I was stabbed ( in a drunken fight) resulting in a collapsed lung, have been shot at on a couple of occasions, was in the "safe house" in Beruit which was bombed at 4am and had to be choppered out and of course did many stupid things that could easily have resulted in serious injury or worse ( but then didn't we all). I learnt that there are things over which you have no control whereas I can have some input of how and what I can do in the fight with this insidious disease.

I am now safely installed in the Weldmar Hospice which equates to a 5* hotel. Salmon for lunch presented as per Masterchef. The grounds are beautiful with fountains and waterfalls, Karen and our dog Poppy have spent the afternoon/evening sitting out in the garden enjoying a cream tea and home grown strawberries. I can't speak highly enough of all the staff and two doctors spent quite some time with me discussing the pain issues.

The main interest has been the arrival of the Enzalutamide which I think came by helicopter under armed guard it arrived late this afternoon and everybody is frantically reading up on it. This appears to be the first time anybody in this neck of the woods has had it and I really do thank my Onco for getting it. It comes in packs of four all of which have to be taken at once....160mg. The course is supposed to last 8 months at a cost of over 25 grand. Strange really as it suggests that the average life span after starting it is 7 months (do you get a months money back?) Being a fully paid up taxpayer I intend to get the full 8 months worth by which time there will be yet another wonder drug available.

The pain issue is hopefully being resolved with another two drugs (names I forget) being given on top of the previous ones (Zomorph , Oramorph , etc) I don't expect things to work wonders overnight but any improvement to the extent that I can take Poppy out for a short walk is what I am after.

So there you have it, I have just taken 14 tablets, will have a cup of Horlicks in a few minutes and another two tablets by which time I think I will be close to being in a drug induced coma and should get a good nights kip.

Wishing you all the very best, remain positive, don't look back on the "what ifs" think of the future because....

Life is for living

Barry (alias Barrington )

I've said it before and I hope I'll have plenty of opportunity's to say in the future,I really admire your positivity.

Best wishes.

Not been the best of days, woke this morning in a lot of pain in the upper back spreading across my chest, worse than it has been for some time. I am in the right place though and had 3 doctors looking at me in a very short time. Both Oramorph and Zomorph is being increased together with another pain medication. Having a chest X-Ray tomorrow but don't think that will show up much. They explained that the CT Scan on the 4th showed an increase in the size of the tumours in the lungs, liver and lymph glands and the general progression of this insidious disease throughout. Obviously a big disappointment especially on the pain side as over the weekend I was feeling a bit better. Of course the Enzalutamide might help in containing the growth of the tumours but the pain control will be down to other drugs. They want to keep me for a further week or so but I will be leaving on Wednesday ready to start as long as it takes to get to Leicester by Saturday. We aim to stop over at my sons on the Thursday and Friday but his place is a fair way up so we have the option of stopping overnight on the way to him as well. My son will then drive us to the gig on the Mill on Saturday and then after the evening meal when he and his wife will be joining us in what undoubtedly will be a messy but full of laughter time before driving us back to their home to stay there for a couple of days before we go to Windsor for two nights.

I am determined to meet up with so many friends and indeed new faces, my sign off phrase " life is for living" can never be more apt than now. I am a pretty realistic bloke and know that in all likely hood this will be my last chance to meet up en masse with so many of you, this is important to me and although I will leave with some sadness the overriding feeling will be one of enjoyment in meeting once more a group of truly wonderful people and will leave me with so many happy memories.

Apologies if this seems a little bit maudlin and believe me I intend to get the full 8 months that a course of Enzalutamide is designed for....as after all.......

Life is for living

Barry ( alias Barrington )

Today I was not only taken by surprise but honoured beyond any expectations. Those of you who have read my story ( you sad people know who you are ) will know that 4 years ago I formed a group called " The South Dorset Prostate Cancer Support Group". This title has always been a bone of contention for me, although it described exactly who we are it was far too long. Following the diagnosis in March that I was terminal I decided that I could no longer give my time to running the group but needed to give my time to my family and in particular to my wonderful wife Karen. Selfish perhaps but in all fairness to any group it needs a leader who can at times give 100% thought to a fellow member's problems etc. and that would no longer have been the case. I handed over to Paul who had been my treasurer and general dogsbody. Paul has since held a successful meeting and conducted another free PSA session which tested another 80 odd men ( they weren't all odd ).

Paul though had the same thoughts as myself though regarding the name of what has now become a very well established group. Rather than just thinking about it Paul came up with a name that was voted in unanimously and the group is now called......"THE NEW MAN SUPPORT GROUP"

For those of you not in the know my surname is Newman.

In the next newsletter Paul will explain the thinking behind this title, the fact that we all want to be a new man following treatment and the link to myself.

So there you are, I may not be very well, more of that tomorrow but right now I am a very proud man.

Life is for living

Barry (alias Barrington )