… but I’m not going to spend one second being angry about it.
I decided under the circumstances that I would start a blog about dealing with what is my final prognosis. I’m terminally ill and I have a pretty short amount of time left. How long that is I don’t know but based on my current situation we are talking about months. That being said, it could be 3/6/9 months or longer even but realistically I don’t expect to see out 2012.
I knew after the failure of the phase 1 trial chemo combination in Feb/Mar that things were starting to look pretty bleak but also that there were potentially other trial drugs we could still try and so met with the trial team week before last. They were pretty upfront from the start that on the basis that the previous trial didn’t work and that was a good combination to try under the circumstances that there weren’t really any other trial drugs that were likely to work for me.
We would be looking at single digit % chance of success and given what’s involved in a trial i.e. lots of hospital visits/blood tests/side effects from treatment etc the team felt from a quality of life perspective it just wouldn’t be worth it for me. I still needed to see the urology team who originally did all my treatment for chemo last year up until the trial to discuss any traditional chemo options. Unfortunately I also knew that given the extremely intense chemo I had undertaken last year didn’t do the job of curing the cancer there wasn’t much chance any other regime would be able to do any more for me.
We had our appointment with the urology team on Friday and talked through some of the chemo options. They can offer me a lighter combination of drugs that I would take as an outpatient, one of which I’ve had before as part of last year’s chemo plus a different one. In terms of what the chemo could do for me it was spelt out as if it works it will buy you some time, probably months. In theory it could be 6/9 even 12 months but most likely the shorter end of the scale. The problem would be that I would be having to deal with chemo while only possibly extending my time by a short amount and only if it works and they don’t know if it would. While the chemo wouldn’t be anything like the intensity I had last year I would still have to deal with nausea, fatigue and all the other typical side effects.
When faced with that the choice to make just felt obvious. No more treatment as it’s not worth feeling horrid from chemo for a small chance it might give me a few more months.
So that’s where we’ve ended up. The doctors have left it completely up to us as to what we decide and we’re going back in two weeks. I can certainly change my mind and still try the chemo but I think it’s unlikely I will. What they are starting me on is a drug to help strengthen the bones in my spine as this is where the main cancer spread is and it will hopefully help stave off the cancer a little longer. Unfortunately my mobility is not great thanks to the lesions on my spine. The radiotherapy should have helped a little bit but I need crutches to move about as I can’t stand up straight or without pain. Because the cancer is in the spine I don’t expect things to improve so I’m doing my best to just adjust to using crutches all the time. I can still drive at least, but long walks are out!
For me personally, I think I felt like maybe this was always coming. That everything about the situation just didn’t feel quite right. The fact it’s still an unknown type of cancer, the partial response to chemo only…. the multiple radiotherapy sessions because it kept coming back. It just seems like I was always going to be this unusual, probably uncurable case. But then maybe everyone thinks that when faced with something like cancer!
What I do know though is that I have such amazing support around me. My wife’s strength, support, selflessness and utter incredibleness (not a word but no better way I can describe it) continues to astound me. My family and my friends continue to show as much support as I could ever hope for.
As I said at the start, I’m not going to waste any time being angry about it. That’s not who I am and why should I waste a single second I have left being bitter or mad. We’re obviously planning out what we want to do with my time, trips we want to make… people we want to see and time we want to share with our friends and family and will absolutely make the most of everything.
I hope that people can find and sense the strength and positivity that I still feel from all of this and know that while it’s a really hard thing to hear and deal with I am still me and hope to be until the end, whenever that is. I also hope that writing regularly about all of this will help people understand, come to terms with, even enjoy in some small way how the heck someone ends up dealing with this situation.
Love and respect to you Spencer for being so positive and staying yourself through all of this. If theres anything at all i can do for you (no matter how big or small) please let me know:
Henry
07738 595 526
I echo Henry’s comments. Offer still stands if you and Tamsin want to come up to Parliament even just for lunch.
James
Thanks James… very tempting as I’ve always wanted to see Parliament
Thinking of you & Taz all the time. God Bless
Lovely to see you and Taz last week. You have not changed since the day I first met you and I wish I will be as strong as you when the time comes. All my love and enjoy the trips you have planned with your wonderful wife.
Spencer (and Tamsin) – Jon updated us last week. Your courage and positive attitude throughout has been amazing and an inspiration to us all. Our love and thoughts are always with you. “God Only Knows” …..
Felicity and Mike xx
Spence your honesty and positive attitude throughout your treatment has been an inspiration to the team at C&W. We are all right behind you 100% and if you need anything please let us know. Our love goes to you, Taz and your family
xxx
Laura
What can I say…just read your blog and your one big inspiration to everyone..I went to school
with your auntie Doreen Thomas….thinking of you and your family.
Theresa Hiney Tinggal x
You are Mighty. I love you.
Spencer, you have always been the most genuine and nice man I have ever met and nothing will take that away from you. You are an inspiration. You are strong, determined, and simply amazing and you touch everyone’s lives. Mikey still asks me about Aunty Tamsin and Uncle Spencer and I know he, as well as I, love you both deeply. I have every faith that you’ll remain you, no matter what happens, and we are truly blessed to have you in our lives. Love Cheryl, Paul, Mikey and Oscar xxx
You write so wondefully and sensibly – you are doing the right thing because you are in control. I hope for everyones sake that your life is long and happy and you achieve all your desire. Be strong and enjoy every available moment.
Chris
Spence…to me and the gang you will always be that gorgeous smiling little boy who came on holiday to Devon and Cornwall with his parents and sisters in the 80s…. who grew up to be a most amazingly brilliant and lovely man. I am in awe of your good humoured frankness and inspiring bravery in the face of all that you must be dealing with. You know that we love you and all your family and stand by you all forever.
Spencer …Unfortunately, I have never had the pleasure of meeting you or Tamsin. Our connection is your wonderful sister, Michelle. Being strong, loving and amazing certainly runs through your family! You have the best attitude to navigate this unchartered and
immensely difficult journey. Your strength, courage, and positive attitude will prevail, as well as, the enduring love and support from Tamsin, your family and friends. Enjoy your trips with Tamsin..Thinking of you
Katherine Michele
Spencer you are truly amazing person to have such a positivie attitude, it must run in the family as Natalie amazes me everyday how strong she is. xxxx
Hey Spence,
I am so sorry to read this but equally amazed at your clearly fantastic attitude. What you and your family are going through must just be utter crap for want of a more eloquent word, but it is great to see that you are all managing to stay strong for each other. Have the most fabulous time you can and as I’m sure you are, live every moment to the full – you are an inspiration to all of us. Thinking of you and sending lots of positive wishes,
Pip (from JL) xxx
Thank you Spencer for keeping us informed of your ongoing treatments, your emotions, your outlook
and the difficulties you, Taz, and the family have experienced and the way in which you have confronted them. What courage, strength and an inspiration to us all. Our hearts go out to you, Taz and the family.
Much love Margaret & Bruce. xx
(Do you remember your Mother and myself having had a day out at some garden centre, picking you up from school and you trying to find a small space to sit in the car surounded by plants!!!! Margaret)
Heh Spencer; Uncle John here, I know I’m probably your second cousin once or twice removed, but age gives me Uncle rights ok ? and like it or not your family just goes on and on extending itself. So I just wanted to thank you for allowing me to recommend you when you were starting out in your career.Simple choice for me because there was no chance you would do anything other than make the very best of whatever opportunity was put in front of you, give it more than anyone could expect, and ultimately do what you’ve always done…………….make people proud of you !!
Seems to me your still doing it.
Stay strong Son, Me and Aunty Gail (she’s probably a cousin too) have you firmly in our hearts.
love you loads
Fiona xx
Good on you Spencer, I’ll be following your journey. Best wishes.
Hi Spencer
Elizabeth (Todd) my uni friend put a link on facebook so I read your website. It reads really well and shows how you have succeeded in avoiding becoming bitter. I’m full of admiration for your positivity. It must feel strange to have so many pieces of the puzzle missing, and of course harder to make some of those important decisions.
All the best on your journey, well done for taking it one day at a time
Sophie
Spencer, I’m so moved by your courage and positive attitude. You really are an inspiration, and a reminder that life is for enjoying and making the most out of every moment. You’re a trooper. I don’t know how you stay so strong, you really are a star.
Thinking of you.
Anna xx
Spencer our connection is through your mother in law, Fiona. I came accross some of your wonderful photographs on facebook which is why I initially friended you as I have worked on a photography magazine and…don’t tell my husband who has had 13 photography books published…but I think some of your action and city life shots are better than his!Although we have not met how you are dealing with all this has touched me…please take more photos and post them on facebook. Look forward to seeing them.You seem a happy and genuine person and the world is a better place for you being in it.x
Thanks for a lovely afternoon…book new york….you know you want to…and you can do it… Xx
Spencer dear, we read your blog with both heartache and admiration for your bravery, your strength of character and your irrepressible positivity and humour, in the incredibly difficult position you have found yourself in. You are a remarkable young man with a sweet and lovely nature. You also have a wonderfully brave, supportive family especially your lovely Taz and dear Mum and Dad.
Thinking of you all with much love,
A Marilyn, U Kevin and girls xxxx
Spencer have you contacted Sloan memorial
Spencer, am following your journey – thank you for having the courage to share this part of your life. Thinking of you,Taz and your family (can’t get over how much you resemble your dad!).
Hi Spencer I’ve been hearing lots about you from the man I call “Uncle Neil” who is actually though your uncle not mine.
I think your blog is amazing and Moving is not the word. What a truly incredible man you are.
I wish you all the best for however long you have left and really hope that do still get that break to New York. Live every day to the full.
Love
Vicki xxx
Hi Spencer, I was following your progress on FB and did wonder how you were getting on when I left FB in February, so I’m glad to have found your website. We worked together at JL some ten years ago when we were young and carefree… Many a Saturday evening spent sneaking underage into the Slug with a drink after work!
Your attitude is absolutely incredible and and I can only hope that in a similar situation I would be able to handle it with as much dignity and grace as you are. I’m so happy that you are married and have the support of such a clearly loving and devoted wife and family, I wish you all the happiness in the world for the coming months.
Jess