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

.

.

.

.

.

.

.

.

.

.

.

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 )

Hope you are feeling well enough to start your journey 'up North' Let the bun fight commence :)

See you Saturday

Bri

Hi Barry,

I have to agree with all the others , a fitting tribute to a very special man. Of course they could have fitted it with your name on here and called it Top Man, then you might have got some vouchers from a well known men's clothing shop.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-wink.gif

Have a lovely time at the weekend. I will be thinking of you all.

BFN

Julie X

Tomorrow we start out on our journey to Leicester a journey that yesterday was seriously in doubt. I was in a great deal of pain taking 20mg of Oramorph every hour and by the end of the day I was quite spaced out. Today however what a change, I had 20mg at 0910 this morning and haven't had the need for anymore, time now 1930. That really is astonishing and I think they have now got the balance right.....50mg of Zoramorph twice a day and 600mg of Gabapentin 3 times a day with the backup of Oramorph as and when needed.

One of the members of my old support group came round to see me this morning and he described how there was a general discussion about the change of name which originated from the floor rather than the chairman and that all and sundry thought it was an excellent idea not just honouring me but as a good name for what we all want and a very good play on words, whatever I am immensely proud.

As an aside it reminds me of when I first joined the Gurkhas and on meeting my men and introducing myself they kept saying " Yes we know you are the New Man but what is your name?".......that went on for about 10 minutes before they finally understood that my name was Newman.

Best of luck everybody, thanks once more for the kind words....next stop Son No1s house.

Life is for living

Barry ( alias Barrington )

See you later, take it easy. I can collect if needed.

number 1 son

James

I am sure that you emailed me a few days ago about staying with us whilst you are working down this way, I admit I might have been in a drug induced state and you didn't send it, but just in case it was something I dreamt up you'd better be careful what you say.....downstairs loo indeed👿 now the posh one upstairs🛀 I can accept.

Well we made it to No1 son's house just fine with only one stop on the way. Karen did a grand job whilst I just lay spread eagled in the back. Again pain fairly much under control with Oramorph taken at 6am, 1pm and just now 7.30pm. A lazy day tomorrow before heading off for Leicester, not quite sure who is driving or even what car we are taking but what the hell we will be there and that's all that matters.

By the way despite the metastatic spread to all parts ( some of which I have never heard of ) my PSA continues to spiral downwards and is now 0.2 .....only Lyn knows why👸

Life is for living

Barry ( alias Barrington )

Xxx

Mo

Barry it is such great news that the pain is under control, was you referring to Lyn http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif

Today's ALP 40 so the 376 pints are mine

See you tomorrow

Si x

I hope you are all having a brilliant time I have sent hugs via Mo, so watch the ribs Barry. You deserve all the best wishes I hope you are having a brilliant time. I wish I could have been there, but love to all.  Raise a glass for me.  Watch Si he drinks like a fish.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-wink.gif  Also watch Bri he is after your sarnies.

I am looking forward to all of the Gossip. Yes a big thank you to George another huge man that we all owe  a debt to.

If there is any steak and chips left over can some one do me doggy bag.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-wink.gif

BFN

Julie X

I know everyone was so pleased to see you there.

You really do inspire others including myself

I hope you didn't find it all to tiring and that you will feel better after a rest

Speak soon

Bri

The "do" was the best yet for me, a fantastic speaker and the food was blooming great Julie, I even ate vegan stuff and am still here to tell the tale!

Big love Topgun xxxx

As promised a few more words on a wonderful hot summers day. At No1 sons house, my daughter and her partner plus my two grand children will be arriving shortly for a family BBQ. The grand children went up on a hot air balloon yesterday so no doubt they will be the main topic of conversation. I bought James a set of Boules and engraved a plate on it saying:-

To James & Jo

Have fun in the sun

Playing with James' Boules

From Barry & Karen

23 May 2014

That was the day they moved into their new house, and you can take the playing with James' Boules how you want!

Back to yesterday, Karen and I were overwhelmed by the kindness you all showed, I have never had so many cuddles and kisses in my whole life....and that was just from the men.

I hope that I am worthy of the kind words George said and those said by so many of you there and on here. I know that things are not too clever at the moment but for all of you remember that I have lived the life for 15 and a half years since being diagnosed. If my consultant had said all those years ago, we can give you 15 years I'd have snatched his hand off.

I am so proud to be among so many wonderful friends, the bravery of the ladies who have lost their loved ones over the years truly amazes me, for them to show so much kindness and support is so humbling. The likes of Allister, Paul (Yorkhall) John and co who have metastasis to the bones yet continue to live their lives enjoying themselves and looking forward to the future gives so much encouragement to those of you beginning your journey and may I add also to those currently on HT etc.

George thank you for bringing together all these marvellous people and as I said before....God bless you all,

Life is for living

Barry (alias Barrington )

PS My apologies to all those I failed to say goodbye to, things were getting a little emotional and I felt it best to leave when I did. You all know that my thoughts are with you all.

Edited by member 22 Jun 2014 at 18:01  | Reason: Not specified

You looked fabulous in your patriotic gear and it definitely was a year for hugging and kissing. I managed to get one for me and Julie with you and Karen and a smaller less sloppy one with James but i am claiming that one all for me.

Ness on the Harley was very funny but the Malaysia /Australia raffle donation was truly splendid and won by a lovely couple.

Have a truly awesome Wedding anniversary and enjoy your mini cruise too xxxxx

Mo

Please let karen know I finally got into facebook and have confirmed her friend request.