No going back (Part 13)

| 25 Comments

I wish none of this was happening to me, but it is.

How do I talk seriously to my girlfriend about dying much younger than I should?

Readers of previous posts will know how important having children is to me, so do we go for IVF knowing full well that by the time they are ten I could be dead?

What sort of impact would it have on their lives?

What does Poppy do then? Getting any life insurance will be virtually impossible so do I bother?

What about buying a house - will Poppy be able to downsize if I die earlier than expected?

Should I ditch saving for a pension?

What about holidays? We both love to travel but I won't be able to go abroad for at least another year or so.

I wish we didn't have to address these questions, but we do.

This cruel and indiscriminate disease impacts not only on my life but also on others - especially Poppy's- and the depth of how much I hate and resent that fact is difficult to express.

Being told you will die much younger than you normally would is hard to come to terms with. "Anyone could get hit by a bus tomorrow, you don't know what's around the corner." That's what everyone keeps saying, but for me the 'could', in this metaphorical incident, has been replaced with a 'will - at some point'.

Also, why does everyone seem to think there are so many bad bus drivers out there?

I wish I didn't, but sometimes I think the best outcome would be if I died in the next couple of weeks.

Sorry.

I did say that when I started this blog it wouldn't be all doom and gloom but everyone has down days. I'm lucky because I can snap out of mine pretty quickly - I've got a donor, a fantastic medical team on my ward, support of a wonderful girlfriend, family, friends and work colleagues.

Since being released from hospital in early March I have had some great times with all of them. Everyone has helped me feel better, just by keeping in touch, making me laugh or by buying me a pint.

People said to me when I told them that I was writing these blogs that it might help others who are in a similar situation. I don't know if that's the case, but from my point of view I have found writing them incredibly cathartic. All the comments have been lovely and I would like to thank everyone who has posted one.

Regarding the bone marrow transplant itself, obviously I'm nervous, but also highly confident that it will go well.

However, I have to say I'm sick of being asked when my "operation" is or "when my hip is being broken". It has become pretty obvious that there is a lot of confusion about what the transplant actually is.

I can't do much in my present condition but the one thing I can do is help raise awareness and clear up many of the myths surrounding bone marrow, or stem cell, transplants.

That's why I wanted to take part in a series of films, explaining the procedure, for www.examiner.co.uk.

My colleagues Gemma Castle and David Himelfield will be making a number of short video blogs explaining how my body is prepared for the transplant, the transplant itself, then attempt to capture what it's like to be in isolation.

From my point of view I hope that last stage is boring and uneventful. It can be a bit of a lottery with symptoms ranging from a slight skin rash to good old-fashioned death. For example, patients can experience severe pain due to the lining of their throat and gut being destroyed during the treatment.

Obviously I'm not too excited about that prospect but I suppose we will have to wait and literally see what happens.

25 Comments

Hi Adrian,

Phil has Mucositis after his transplant but a morphine driver into his arm did the trick, if not quite so dramatic as into the neck and we looked forward to the rash, waiting for it to happen every day as it means the marrow is starting to fight off the leukeamia. The rash is all gone now and his skin is good again.

All the best Trish

Hi Mr Sudbury,

It was fantastic to receive your email mate. Indeed it has been a long time. I am absulutely glued to this blog. It's mind blowing. I sat some of the junior doctors down in the library at Preston Hospital the other day to read the blog. They commented that they learned more about your condition and the impact that it has upon your closest friends and family than reading a tonne of books. They have asked me to pass on my very best wishes.

Don't forget to watch my Liverpool boys in yet another Champions League Final!!

Best wishes. Dr Gazz x

Adrian

I've only just found your blog. I don't have anything profound to say - but thanks for your honesty and for sharing your story. It is making a difference to other people - those of us who don't share the experience as well as those who do.

Please be assured of the prayers and love of people in Stourport and Wilden.

Eva

Short films? Interviews with Press Gazette? What's next - GMTV? I'm loving your work Adrian! Your blogs are great - witty, informative and this one made me cry. Proof you're in the right job!

Lucyx

Hello Big Man!

I read the blog cover to cover (if you can do that on the net!). There's so much I didn't and still don't really understand about this shocking reality, thanks to you I'm one step closer. There aren't many people who would find the courage to express themselves so profoundly in a situation of this gravity so give yourself a huge pat on the back.

I'll stay tuned and be in contact very shortly.

Much lovin',

Christo x

p.s. Where did you get that hat???????

Just to let you know Adrian that your blogs are fantastic. Always brings a lump into my throat when I read themWould like to take this opportunity to wish you good luck for next week and hope to see you again very soon. We are all thinking of you.

Love Super H

Sudders,

Just to say again what a great job I think you are doing with the blogs. And now I hear the Examiner's 'Next Generation' are to film you! You'll have your own cable channel before long.

All the best mate,

Richard, Ellen and the bump.

"Good old-fashioned death" - what a quote, you are turning in to Oscar Wilde.

Hi Ad, how are you doing? Hope they've got you a sterilised computer in there so that you can still keep up with these! We had a great weekend just now raising money for the Anthony Nolan trust - Pops did a great job of organising us all, and it was a lot of fun, but we missed you! So much!! So I'm making plans for a Christmas in November, so that we can all make it - so that's one for the calendar for you. No excuses next time!

All the very best through this last difficult stage - you know you can do it. I always knew you and Poppy were amazing, but how you're getting through this is a testament to you both.

Lots and lots of love, Helen.

A most moving story, but told in both an informative and entertaining way. I wish you every blessing as you enter the next phase of your treatment. Keep smiling.

hi Ady, glad i finally caught up with your blog ! Deservedly , you have had a fantastic response off loads of folk , it is every bit as informative and well presented as you had described it - keep going !!!!

Anyway, just want to offer my very best wishes to you and Pops, will definately catch up with you again real soon and i hope your road trip went grand!!!

Stay strong pal, Rach and I will definately take you and Poppy out for a curry when you are next out !

And finally ..... 'TATSUMAKISENPUKYAKU !!!

Best best wishes ... Mike

Damn you, Keron, I've got a tear in my eye!! And so early in the morning.......thanks for putting up the crew - I promise that's almost definitely the last time I invite six people round to your house.xxx

Hey shades!

I would just like to second Helen's comments about this weekend rafting affair. Hopefully we will have raised about ��4,000 in total from the event for the Anthony Nolan Trust to help get some more donors on the register! I am missing you loads and would also like to congratulate you on the Times article today - you really are taking the media world by storm! Getting ill seems to have been a great career move!

Seriously though, I am sure that the transplant will go well tomorrow and am flat out refusing to consider that any other outcome is possible. I have always been pretty bloody minded!

Hopefully the wedding this weekend may give Pops some light relief and I will make sure she has a medicinal gin and boogy!

big hugs

hanx

Hello Adrian

I read about you in the Times and tore out the bit with the web address. I do wish you lots and lots of luck with your treatment. If you look at http://www.bbc.co.uk/essex/features/tumour_diary/index.shtml you'll find Alison Hartley's 'tumour diary'. She worked at BBC Essex and now does an occsional blog to give her progress. I met her a few months ago and she looks amazing.

I shall follow your blog.

Take care, you have lots of people wishing you well.

Linda in Chelmsford

Hi Adrian,

I read your story in the papers this morning and have been reading your blog since which is very moving. I was particularly touched because I knew someone in your situation, only he didn't manage to get a bone marrow transplant.

I work for a tv production company called Mentorn and wondered if you would be at all interested in having a chat about bringing your story to a wider audience.

You can email me of call me on 01865 318482 or 07932 783195

I do hope to hear from you,

Celine

Hi Adrian - just found your web site, keep up the video diary.

Don't get bogged down by the questions you ask, live life to the full and take every opportunity to do things you want to do.

Sure we all get down having Leukaemia, but they can wait till you get to the other end of your journey.

Being diagnosed with Leukaemia (CML) myself back in early December and having a young family you ask yourself the same questions, sometimes a number of times. But it puts a lot of things into perspective, what is really important in your life and what you want to do with it.

Keep up with blog I have subscribed to your feed :)

Rob - http://cmlblog.spaces.live.com

Hi Adrian, you mention that having children is important to you and that you are considering IVF. I don't know whether you are aware, but a fertility clinic could freeze your sperm at this stage, rather than you and Poppy having IVF now (or freezing embryos now). Then you would have the choice to use your sperm for IVF in the future, possibly for multiple attempts, rather than just one IVF cycle for creating embryos now before you become infertile. Sorry if you already knew that but I thought it was worth mentioning. Good luck with everything.

Sudders,

Just watched the vids, good stuff - though some of the camerawork was appalling :)

Best of luck for the transplant tomorrow.

Cheers,

Barry

Hi Adrian,

Wishing you well for your big day.



With Lots of Love,

Auntie Sheila, Uncle Jim, Bob, Di., Rick, Julie, Jack, Alice and Harry.

XXXXXXX

Hi Adrian

I guess you are in the thick of it now feeling pretty rough?? Don't despair. My son had undifferentiated Leukaemia 7 years ago and had a bone marrow transplant in Feb 2000. He had his 18th birthday on the Bone Marrow Unit at the QEH in Birmingham! He is fit and well now has had holidays abroad and is getting on with his life. There is life after BMT!! Keep positive you will get through it I have no doubt.

Love and prayers

Sue White

Hi Adrian,

Lots and lots of luck for the future. your blog is fab and very courageous as you must be feeling worn out.

I have just sent off my blood sample to Anthony Nolan for tissue typing and hopefully I will be up and running on their list of potential donors very shortly. I would encourage anyone reading this to consider becoming a potential donor in order to help others with this disease - more details can be found at www.anthonynolan.org.uk

Keep smiling Adrian :-)

Dawn xxx

Hey Slim,

I only spoke to you this morning but i wanted to post a little message as i know you receive the donation today and i can't stop bloody thinking about you.

I find it kinda funny that you are hoping and praying for a rash to come along after this...it was the complete opposite when you caught scabies when we were at liverpool.

You put me to shame mate, you have handled the whole thing with immense dignity and at times it felt like you have been re-enacting the classic Catch 22 - except you look nowt like Yossarian!

I think that the blog you have done is awesome and it is a real eye opener/wetter. But as it has helped you so much i was thinking of writing one myself. Being the great journo you are i wanted to know whether you could help me with a title. I was thinking along the lines of:

Olie D'Albertanson - Isn't life cruel/ Being Ginger!).

The chances of anything coming from Mars are a million to one they say!

Hello Adrian, my daughter Abbi saw your blog, and passed it on to me. Had a BMT 2 1/2 years ago (in the Royal Liverpool - GREAT team!!), now back working, getting my life back together!! It will take a while, so don't demand too much of yourself, 'roll with the punches', when you feel 'wiped out', relax let it all go by. As you say it's a journey, but a well trodden path - many have come this way before us, keep positive, you're fit and young, "it's do-able" says my mate Paul Flyte!

My thoughts are with you, BEST WISHES David

Adrian,

There is nothing anyone can say that comes even close to understanding what you are going through. I'm sitting here, with my laptop, in Birmingham, reading the blog of one of the bravest guys I had the privilege to read about.

Thank you Adrian. Big love. Hope to join you for a cuppa sometime.

Akil.

A.D,

Bin a while crocodile. Have watched all your vids after finding out from my sister that you were ill and all I have to say is that it's impressive. Not the blogs and the reporting (you always were very wordy and good at that stuff) but your whole attitude and outlook in general. I doth my cap to thee sir. All the best mate.

Chris Wilks.

hi adrian after my husband was told a few weeks ago he would be visitng rotherom for treatment for graft versus host desease. I started surfing the net to find out what it all ment. After a while of ploughing through lots of medical jargan i found your sight,what a breath of fresh air ! Not only did you explain clearly but in laymens terms. Thankyou from a worried wife .Marie

About this Entry

This page contains a single entry by Adrian Sudbury published on May 8, 2007 12:54 PM.

Bone marrow donation - it should be called stem cell donation really (Part 12) was the previous entry in this blog.

Thank you (Part 14) is the next entry in this blog.

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