The Waiting Room (Part 15)

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Apologies for not updating this blog sooner.

I felt for a while that I should have written something but I was never quite sure what to say. The amazing comments that have come from the hundreds of people regularly taking an interest in my story have been unexpected and inspirational for me.

It's also been helpful knowing that the posts have provided a useful insight to people who will have to undergo a bone marrow transplant in the future.

I suppose it's with this group of people in mind that I've been most reluctant to write anything else. Much of my time post-transplant hasn't been much fun and I'm still nowhere near full-fitness.

I finally decided to write this post after talking to my grandma in Nottingham. Basically she's bullied me into writing it arguing that people respect honesty and the truth- even though it doesn't always make for pleasant reading. I think she's right, so here we go.

The first thing to say is I am waiting for the results of my final bone marrow sample. It's been sent away for analysis and the results will show that the leukaemia is either still here or gone completely.

I suppose the best of all outcomes would be the all-clear - of course it would. But people are already saying to me the champagne corks will be popping as if that's it - it's all over, life can resume as normal. But of course it can't; it will never be the same for me. I can never have children naturally, I will be dead probably by the time I'm 50.

No one seems to understand that it can never just stop there. There will be tests, getting ill, I still feel sick most days now, and there will always be that nagging worry over whether the disease will come back.

I am struggling to accept the cost at which this treatment has come and often flash-forward to my attempts to sound positive when friends and family call regarding the 'good-news'.

And that's the best outcome.

The other alternative is the cancer, somehow, has managed to survive. A significant part of me has come to the conclusion that if those cells can withstand that level of radiotherapy and high-dose chemotherapy then maybe they have earned their right to flourish and to take me down with them.

Further treatment is something I am incredibly reluctant to have. I certainly don't want to have a bone marrow transplant again. In some ways I wish the doctors would just say: "Sorry, there's nothing more we can do," at least that would rid me of the constant anxiety, the restless nights, the long days on my own not feeling well enough to do anything but well enough to be bored.

At least a clear six months to live would mean I could plan for some incredible trips and parties. If you're going to pop your clogs you may as well do it in style!

On the outside I think I have kept good control over my emotions but on the inside I'm really struggling. I've never been a good sleeper so night times are always the worst.

Talking about God seems almost taboo in this country and in this time. No one outside of religious groups seems comfortable speaking openly about him - unless to blame him for all the ills of the world - but I feel it's important I share this experience.

My last week and a half in isolation was an awful period for me. I'd not eaten in that time, my stomach was constantly sore, I felt so alone and cold. During my entire illness I had never prayed to be made better - only to avoid the bone marrow transplant.

Inside that room, on those eight days or so, all I prayed for was to feel that there was something else that cared and loved for me; but nothing happened. I was unquestionably alone. I didn't expect a flash of lightning, or the appearance of some biblical apparition, I only hoped for a kind of intrinsic sense that there was more to all this than just me, lying there curled up, tears running gently from my eyes.

I have always tried to pray for other people and had a burgeoning faith. So, for me, this experience, when I was at my absolute lowest, will stay with me for however long I have left to live.

Yet interestingly it was a hospital chaplain who was one of the greatest helps to me through these difficult times. He would pop in at least once a week and chat with me about anything and everything. We would have a laugh together and I can't tell you how wonderful it was to converse with someone who wasn't medically or emotionally connected to me or make inquiries as to how many times I had "opened my bowels" that day.

You see the problem is being cooped up in that box for so long affects different people in different ways. For me, I found being 'attacked' psychologically, as well as having your insides reduced to pulp, very difficult to bear. Some of my treatment took place at 2am with observations around 6am. This meant on top of everything my sleep was always broken. I did joke with the nurses that they may as well have gone the whole hog and stuck me in an orange boiler suit while playing white noise through the radio.

I'm not an angry and bitter person but I hated how my 'treatment' was turning me into one. I was only allowed to have three visitors for the five weeks so obviously chose Poppy and my parents. I love my mum and dad - and hate snapping at them- but the situation just made me so irritable.

I still don't think I fear dying; it's anger and sadness that I feel most now. I torture myself with daily viewings of the Jeremy Kyle chat show where horrible ex-partners, whose sense of self-importance seems to have replaced their brains, scream at each other for twenty minutes about the custody of their neglected and un-loved children.

There are people throughout our society who are having children who simply should not have the right to. They are bought up in loveless and broken homes so it's little wonder that youngsters emerge from this moral vacuum to make the lives of their neighbours, teachers and everyone else a misery. It's also no surprise they join gangs and have no compunction about stabbing or shooting their peers.

I get angry that my natural right to have children has been ripped away from me.

Sometimes I want to punch one of the walls in my flat, but then I glance down at my scrawny arms, which bear more resemblance to pipe-cleaners, and think better of it.

The sadness I feel is for the time I have lost, and if this leukaemia can't be beaten, then for all the happy times that I know could have been.

The results are coming and I can't help feel that all this sitting at home, my mind being gently eroded by the banality of daytime television, is like being in the strangest, and cruellest, of waiting rooms.

16 Comments

That was a bit weird/depressing wasn't it? Sorry.

I've been in hospital for a while with another infection so have been away from the internet. Can I say thanks to Annie from the USA- I think you have really helped my mum. Please pass on my best wishes to Steven too.

Liz, I'm sorry to say I support Nottingham Forest! Hope I haven't gone down in your estimations too much.

Kind regards to everyone,

Adrian

Hello Adrian

Great to read your latest news-your Grandma is right-honesty is the best policy.It is awful what you are going through-no one can understand completely and everyone with leukaemia have different coping strategies.Please try not to get too disheartened-remember all those nurses and doctors haven`t given up on you yet so keep at it for their sake if nothing else.Also,don`t think too much ahead and take a day at time.All this sounds easy doesn`t it?I know it`s not as my experience over the past two years has demonstrated.

Perhaps we could play Scrabble over the internet?! Will (my son) grew to enjoy Scrabble!!How sad is that!

It`s a raw deal you`ve been given and it`s hard to see everyday life going on around you -I felt like screaming frequently at the injustice of it all.

By the way, we support Crewe Alexandra!! So you definitely have not gone down in my estimation!!

Try watching Friends instead of Jeremy Kyle and you could get all your Christmas shopping online!!!

Best Wishes always

Liz Boffey

Hi Adrian

Your mom has really helped me tremendously too, as have you. You guys sound like one flippin amazing strong family. And, yes, sometimes there is more strength in crying and sharing the pain, than keeping the stiff upper lip and bottling everything up inside.

Sharing what you feel gives me a better insight into how to deal with Steven and I thank you tremendously for that. It takes guts to share like you do, so even though yours have been turned to pulp - they are still helping :-)

That waiting for the results is just the absolute pits, right along there with daytime tv. It's difficult to imagine that some people watch that stuff out of choice!

There are no words of comfort that I can give you, nothing that will make any difference at all, so I will just send a very sincere hug.

A deep thanks for sharing.

Love and Light

Annie

www.livingwithcml.blogspot.com

Adrian, your story continues to move me and I hope you won't mind me passing on this blog entry to the school staff - as you know, your Dad was Head here before me and I know several of his ex-colleagues follow your story.

My thoughts and prayers are with you and your family. I am sure your courage is a great comfort to others with leukaemia. Hang on in there!

Jenni Page

Newark High School

AD, I LOVE YA XX

Gareth x

AD,

I know from our conversations that you have been concerned about posting this. Your Grandma is right and I'm proud that you had the courage to continue your writing and post it. You needed to give a true account of your experience to inform everyone of the reality of the disease and not try to soften the blow. It's a cruel disease affecting all aspects of your health and life.

You've told me that writing this blog has been a great focus of your energy and I hope that the honesty of such a beautiful and emotive piece of writing has helped you process your thoughts and emotions. We're all in the waiting room with you. Love Jen x

Adrian,

Please do not be concerned about writing this. You are telling the truth and people who have got to have this treatment will thank you for that. We who have not had treatment will never know what you have had to go through and still continue to. The people who have had this will understand you completely and the people who have not will be well prepared of what to expect because of your selfless actions doing this blog!! I can understand your anger a little, my daughter (15) has got to have IVF to preserve her fertlity. When other girls are worrying about make up etc she is worrying about her future. Do not let it get you down. I admire you for what you have done Adrian and I am sure that a lot more people do as well. All the best for your future. Dawn xxx

bonsoir Adrian, I don't know if your French is better than your dad's so I'' leave it at one word for now! Your dad is a great headteacher and person. I meant to write before but I found it difficult because I kept racking my brains to find something that would be of great help to you but couldn't! However reading comments other people have sent you I thought I'd just let you know I think about you and your parents and pray you get better.Now I get even more intolerant of pupils or people who moan about ' piddling little things' ( as we say round here!), but I suppose it's human nature!! best wishes, brigitte balestra

Hi Adrian

Liz ( again ).Are you watching the football?Do you think England can possibly manage a win?!

Best Wishes

Liz Boffey

Very sorry to hear about Adrian's situation.

Wanted to inform him about a natural material called Ormus that cured my health situation and has had excellent reported results in various serious illnesses.

It would seem this was known thousands of years ago, but these days we seem to have forgotten all about it.

I can provide more info if someone would like to come back to me on:

rak@rking136.freeserve.co.uk

Kind regards - Ronnie King

Dear Adrian,
I read your story and could not help writing to you . I am a hematopathologist by profession, practicing in USA. God put me in a position to do my best to render correct diagnoses on leukemias and lymphomas for several years now. After years of personal struggles and medical practice I have determined one thing to be of greatest significance, ultimately, in ones life...which determines our fate here in this world and in the life to come (assuming you are either Chrisitian, Jewish or Muslim ) and that is faith in one God. I have seen patients not respond to most established curative regimens just because... and with all the scietific theories that we think we have mastered, there is no good reason.. and I have seen people go into long remissions on experimental protocols which are not even standards of cure yet. Therefore while we do our best to find the best possible scietific cure, we have to have faith to implement these cures. Have you wondered if there could be a super power behind all these judgements..look arround at the mastery of creation of earth, and cosmos, how complex and yet how well programmed! Look into your own being, how complex is the biology from cellualr to the organ level, and yet so intricately balanced and we call loss of that balance a "disease". So, even though Doctors have told you whatever time is left for you.. If I were in your shoes, I would search for the truth.. and I would search for the healing in God's mercy. You are doing a lot of good for reasons that only God and you know about. Donot intoxicate yourself by harmful things like alcohol (sorry I noted that in one picture) and do not justify any wrong in the name of "fun and entertainment". The best thing we can do for pure satisfaction that is not dependent on material things is to do everything for God's sake, with out expecting any returns from any one and then only we enjoy the peace felt in this true "freedom from self"... our souls are very shallow and selfish and make us loose sight of the truth and , agian, assuming you are not an atheist, the ultimate truth is the life after death which will be for ever. This world is but a temporary abode for all of us.. young and old...and, as a muslim, I believe, whatever I earn here in terms of selfless good is going to matter here and forever... I will remeber you in my prayers. May God guide us all, to see the truth as truth and falsehood as falsehood and..Adrian, please forgive me if I offended you in any way or hurt your feelings. If you are into reading, read a book called "even angels ask" by Jeffery Lang. It helped me turn my psychotic life arround to be more calm and meaninful.. May God be with you. None of us know when and how we are going to die. Only God gives life and death and only He has the knowledge of these. I could die before you, even though I do not have leukemia. It happens every day arround us. Our Prophet Mohammed(peace be upon him) said, "live every day like it is the last day of your life (off course he meant it to be in worship of God and reaching out for the poor and helpless and not be indulging in self entertainemnt)" I do not intend for this message to be acknowledged or posted.I just wanted to post this message for you... because I feel for you as a fellow human being and if you are a muslim, you are my brother in faith..I just cant know about you and not do anthing about it. I pray for your cure and spiritual well being...
Regards,
Dr Hassan

I just hear an interview where you said, you have tried everything.

Have you tried RADIONICS?

It is the kind of therapy most health care systems dont want you to know about. But it has cured thousands of people.

Research it, it is well known in England.

Regards

Dear Adrian,
I pray to God for you to have a full recovery.
I just wish that you become a Muslim so you would enter the heaven. You are such a brave man and I pray for you to be guided to the right path.

Dear Adrian,

I am the mother of a 39 year old daughter; her name is Susan. Susan was diagnosed at Stage 4 with chronic mylogenous leukemia in March of 1996. Her story was never made public in this manner, but I wish we had known about this possibility while she was undergoing all of the struggles she encountered. We know about the difficulty of finding a match for a bone marrow donor and can appreciate the need for more people to be tested and entered into the registry. Susan had 5 siblings that she didn't match so she had to settle for an unrelated, male, 5 of 6 antigen match. It kept her alive for over 3 years, but she did suffer extreme GVHD. During those 3 years she blessed everyone with her show of courage and bravery. Unfortunately, Susan did not survive and left 2 children whom she loved dearly. I'm not sure what I'm trying to convey to you and others going through this ordeal, but you have been an inspiration to all of us. I believe in a life hereafter and look forward to being with my beautiful, loving daughter again. We talk every night about that time. You too shall enter that better place and come together with everyone that loves you now and forever. My opinion for what it is worth. I've enjoyed your blog and videos so much even though they bring a lot of sadness back to me. You are a great example of courage and reality. God love you!

I saw your interview on the net. And I started thinking... You said you have tried everything, so I will only give the advise to listen to Zero Limits... You have a great attitude about life, and I think you would benefit from Zero Limits... You are so cute... And you deserve to have all kinds of happiness in your life.... God bless you my good man... You can create anything you desire..

I am a colon cancer survivor 2 years now. I was lucky, lost 4 feet of colon but remain free so far. I have had some lasting side effects but nothing worth complaining about. My prayers are with, be strong

Tom

About this Entry

This page contains a single entry by Adrian Sudbury published on September 3, 2007 7:27 PM.

Sean Bean! was the previous entry in this blog.

Bone marrow donation is the next entry in this blog.

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