Thursday, 20 November 2008

End Of The Line Soldier Boy

So I had the scan.  No problems.  There was no queue and it went like clockwork.  The next day I had an appointment to go through the results.

My wife and I turned up at the proscribed time, cus that's the sort of people we are (well, we tend to be late, actually).  When we got there our doctor was running 3/4 of an hour late.  Great, more waiting.
When we were finally ushered in, I was asked how I  was and have been.  Then he gave us a letter which was the reply from another possible hospital that might have been able to help.  It basically said, yeah, what you're doing seems okay, bye.  So, that was helpful.  Then, when there was no more small talk to have, my consultant said it was once again bad bad news.  I had gone in expecting good news (talked myself into it), but was ready for bad news, but not quite what I got.  He said that not only had the tumour carried on growing, it had also spread.  That was what I was definitely not wanting to hear.  It got worse.  Rather than just spread to a few lymph nodes in my neck or something, no, it had to go for places that I didn't want messing up.  It has spread to my liver, kidneys and other lung.  Whoopee-do.  I am officially riddled with the crap.
Then I was told there was nothing else they could do and that I had a few months.  We asked about other centres in the UK and were told there were no other drugs to try and no clinical trials happening that were relevant or that I could get on, etc.  Basically, your stuffed mate.  The hint was made to not try and fight it any more but to enjoy the time left before bits start breaking and falling off.  I can't do that.  Now, for half of this I was sat silently in shock, whereas previously I could still keep my chin up and add in the odd wise crack.  It was my wife who interrogated them for some threads to cling to.  We asked about the option of trials in Europe or the states and just got blank expressions and told we could search the internet, which I thought was a bit rubbish.  I've seen article written in 1994 about multi drug resistance and theories and possible drugs etc, surely by 2008 something must have come of them.  
Anyway, we left, sat in the car in silence for a while, hugged and cried, in no particular order.  I felt sad, angry, bitter, helpless and a myriad of other emotions too numerous to list.  We went and got some lunch.  Talked and hugged, etc some more.  I decided I didn't want to mope around in the evening and so we got some good friends and went out to one of my favourite restaurants (mexican food, I love it).  I got a bit drunk, as did everyone else.
Now, its back to searching for something that may help.  I'm not ready to accept the end of the line, even if that's where I might be.  A bit of selective blindness/deafness can be useful.

28 comments:

Adam said...

Keep fighting the bugger mate, if the NHS can't do anything then someone somewhere must be able to try something. My thoughts are with you big dude.

Adam

Anonymous said...

Rich I can't express how sad and p'd off I am by your news.

I have to tell you how much I admire your fighting spirit.

I am still believing for a miracle for you. If anyone deserves it you do.

As ever let me know if I can do anything.

Pikey Paul

Anonymous said...

I am so sorry Richard. I don't really know what to say.

I originally followed your betfair blog and remember the evening I read the posting where you announced you were unwell. It hit me really hard because even though I have never met you I felt I knew you and it made me so angry.

Through it all you have been amazingly positive and incredily brave always looking for some good news to build on. You should be so proud of yourself and I am sure everyone who has followed your story will agree.

Keep going man and keep searching for someone that can help you. My thoughts are with you and your family.

Paul

Anonymous said...

I've been reading your story because we have a mutual friend. I'm very sorry to hear you got such bad news, but keep your chin up and try to fight it.
If you are interested in the States, you should try the Mayo clinic as it specializes in cancer and may be able to help.

Chemo-Man said...

Richard,

A bunch of four letter words sums up my feelings right now. I am glad that you will continue to fight. I don’t know of any alternative treatments, but I’ll help you look. I do live near the Mayo Clinic in Rochester, MN and in fact, that’s where I got a second opinion on my lymphoma diagnosis. My oncologist is a Mayo alumnus. I’ll check to see if they know of something else. However, I don’t see the Mayo as doing any cutting edge research in this area. They do clinical trials, but there are some other places in the States that might be better. Stanford University School of Medicine specializes in Lymphoma. They are the guys that invited Rutiximab. Stanford would be one of the first places I would go to if things weren’t working out with my clinic. Keep fighting dude; you are not alone.

Lee

Anonymous said...

No words, just heaps of love to you and lady. You know i'm here whenever you want me. Really good to see you last night and you were looking good!
See you soon, always thinking of you guys
Katy Kangaroo xxxxxxxxxx

Damnyoureyes said...

Hi matey
If you find any trials in the states and need cash, arms or legs or anything mine are at your disposal.

Lee mentioned Stanford they seem to have a list of trials here
http://med.stanford.edu/clinicaltrials/publicCancerDisplayList.do?id=7907&ageType=adul
And they say they have more

Keep fighting dude

Chemo-Man said...

Richard,

Here is another place in New York that is highly touted and develops new therapies for nonresponsive lymphoma. I'm no expert at these things; just a regular Joe trying to help out a fellow lymphoma fighter.

Can you share details about your lymphoma, like cell type and blood stuff?

http://www.mskcc.org/mskcc/html/66054.cfm

Lee

andy said...

Hey Rich,

Gutted to hear your news, and I thinking of you and crossing my fingers for you too.

If there is anything I can do to help from down here let me know, other than that my movember mo is looking suitably stupid - you can see the latest pic on my facebook...

Sandra said...

Hi.
Just want to second Damnyoureyes and say that if there's anything you need - including some money towards the States thing - Rob and I would be very happy to help.
Love
San x x

Anonymous said...

Rich, I'll get in touch with contacts in the US to find out if anyone has any leads for you. Take strength from the love & support around you and keep fighting. If there is absolutely anything Louise or I can do just let us know.

Love to you, Sam & family xxx

Anonymous said...

devastated by the news richard , for you and your family . Visited our favourite place of peace yesterday , namely , Mount Saint Bernard's Abbey and prayed ,lit a candle and got the Monk's to pray for the miracle we all hope for through a very special monk called Gabriel .
Keep your inner strength and keep fighting .

love Bert and Chrissie

Jo said...

Love you Rich!
So glad you're not giving up hope. Trent Vineyard church and various Vineyard small groups are all praying for your miracle of healing. If medicle science can't fix it, the big man up there can surely sort you out!!!
Love always,
Jo x

Peter Fletcher said...

Morning Ricardo
So good to spend the day with you yesterday, what a pleasure, what a privilege and what a blessing!
Far from being the "End Of The Line Soldier Boy", yesterday was a new begining, the first day of the rest of your life. With God, ALL THINGS ARE POSSIBLE!!
Love, prayers and every blessing to you, Sam,Beccy and Harry
Peter and Jane <><

Anonymous said...

Rich

Can you tell me exactly what your diagnosis is i.e. lymphoma type? I know the management of companies developing drugs in this area and I would do anything I can to try and help if there are any options left. There may be compassionate use programmes for some of them. I will be going to the American Society of Heamatology in two weeks time as well and there are a few new things coming up but I would need to know more details if you want me to find stuff out.

Rich P

Anonymous said...

If you want to do your own research, this site is the official federal list for all registered ongoing clinical trials. The other sites will only give you a limited list. I spend my life searching these things so I know what I am looking for and what would be approporiate if you can give me more information.

http://clinicaltrials.gov/ct2/search

Rich P

Jaime said...

Keep fighting Rich - as you said yourself, it aint over until things start dropping off, and even then there's superglue and sellotape !!

I've had a quick look and found this website http://www.nci.nih.gov/cancertopics/pdq/treatment/adult-non-hodgkins/HealthProfessional/page8#Section_123_8

If you go to the bottom of that page there's a link for clinical trials for which stage of non hodgkins you've got. It's in the States but it's got to be worth a look in to.

Loads of love to you, Sam, Becs and Harry x

Anonymous said...

Just been reading through all these posts and well I felt like crying, I was quite moved. There is a lot of people out there who love you and admire you. You are an exceptional human being. I hope you get somewhere with your research. In the mean time I will put in a good word with the HIM up there.

Pikey Paul

Jaime said...

And another one to look into - this one is UK based through Cancer Research UK.

http://www.cancerhelp.org.uk/trials/trials/default.asp?searchtype=&objective=0&cancer=0&stage=0&phase=0&treatment=0&location=0

Jaime said...

And another one that looks like it can point you in the right direction for UK trials...

http://ncrndev.org.uk/index.php?option=com_content&task=view&id=123&Itemid=261

Anonymous said...

Rich

This site has details of clinical trials.

www.lymphoma.org

Anonymous said...

AGE here in OZ - previously at IIS and the gym where I trained with the "chihuahua" look for me on linkedin or google me for an off blog discussion.

AGE

MARK BELLEW said...

Listen mate ..... Jane Thomlison was given the bad news like you that she had only months rather than years and she went on for so many years even tho she was terminla because she wanted to live mate just like you. I hate that word Terminal and nothing can be done because its never over mate and not with your courage and outlook.

I am glad there are people on this blog who are giving you some options to look at mate as i know you will.

Come on mate keep your head up and dont let this **** illness put you in a miserable place. You have hope still and nobody can take that way buddy as well as people praying and giving you their love.

God bless and help you out mate as you deserve more.

My best wishes and to you and your family at this tough time.

Mark

Jane said...

Hi Rich

Just wanted to let you know that our whole church prayed for you and all your family this morning. You're becoming quite a celebrity! It made me realise that during the morning there would also be so many other churches praying for you too - in this country and abroad - wow! There is definitely power in prayer so the more praying people who can join us the better. Love to you, Sam, Becs and Harry, from Jane

Anonymous said...

Hi mate,
I was reading your blog for some time, my heart is with you and I really want to help you heal.
I want to tell you about an experimental wonder drug that helps many diseases (I'm on it for almost a year for my arthritis and I'm 95% cured). It has an effect for cancer too. If I were in your place, I know I will try it.
The drug is not expensive and it is available at pharmacies by receipt. It has no side effects FDA called it "the safest drug in the US formulary."
Check this sites:
http://www.marshallprotocol.com/forum37/4285.html
http://www.marshallprotocol.com/view_topic.php?id=1784&forum_id=32

The name is Benicar in US, Olmetec in UK m Votum in US. It is an ARB (angiotensin receptor blocker) used for lowering blood pressure. But this specific drug has some very special effect on immune system, organ regeneration, and healing. I think you can halt the disease with it, and then after some months the disease will retreat. Maybe your doctor will give you a prescription for it.

I hope you'll get well my friend. I'm praying for you.

Peter_B

Anonymous said...

gl
bro

The Finisher said...

Keep fighting mate, never surrender!

Philip1978 said...

Hey Richard

Just wanted to add my encouragement as well, if there was ever a man I knew who could beat the odds, its you.

So keep fighting you hear, I am proud of your confidence and upbeat mentality, keep it going and you can beat this.

All my best

Philip