Leukaemia – The tale of a donor

Lorna Dane, October 2008

 

It seems like a lifetime away now but I started writing this in June of 2008, less than 6 full months after I received the shocking news that my sister had been diagnosed with “M1 leukemia” and between diagnosis and admission to hospital there had been only a week to come to terms with this terrific blow.

I live in Camberley in <placew:ston>Surrey and my sister in Ayrshire (West of Scotland).  I felt useless and remote when I heard what was happening.  This is the donor’s side of a story, so forgive me if you think I am being selfish in not putting forward my sister Susan’s point of view but you see, I want more people to do what I did in future.

 

Families are peculiar things at times and in particular, sharing this type of <personnamew:ston>information between four sisters and our parents was a confusing and emotional rollercoaster.  We all prayed for Susan of course and wondered what we could do, but it was unanimous that we all felt helpless to her cause.  We simply had to wait for instructions of a more ‘medical’ nature, and support in any practical way we could to maintain a positive foundation to her life and family whilst she learned of the prognosis, processes, medications, options, statistics and timelines this terrible disease might proffer.

 

Early in March, three sisters, of whom I happen to be the youngest, received a letter we had been expecting from the Clinical Apheresis Unit within The Beatson West of Scotland Cancer hospital in <placew:ston><cityw:ston>Glasgow.  The letter politely asked if we would be willing to provide a blood sample to determine if one or more of us might be a potential match, and therefore a donor for our sister Susan.  My mind was made up in a nano-second!  I made the call the next day to confirm that I would do this and that wanted to know more about it.  I was <personnamew:ston>informed that the necessary letter and container for the samples would follow in the post and that I should arrange for the blood test to be carried out at my local doctor’s surgery.  This was all carried out in a very short space of time and, at the time of the test, I recall thinking as the small sample of blood was placed inside a second even more secure vessel and then placed into what was no more hi-tech than a padded envelope, how this act just might change things for us all.  It was at that stage that I had mixed feelings about the whole thing.  One hears so much about bone marrow donors and personally, I knew none who had volunteered to ask.  I trawled the internet and could find little to put my mind at ease.  I knew I would go through with whatever was necessary, but that wasn’t to say I didn’t have doubts.  Those would creep up on me again even later!

 

I laughed about the analogy of the ‘big blue lottery finger pointing in my direction’ but somehow, I did feel even at that early stage ‘it would be me’!  I talked to my two sisters but in particular, to the eldest, Jane who seemed to feel that it could be any one of the three of us who would have the ‘calling’.  We received the communication that there were two potential matches and appointments were made for me and Jane to fly to <cityw:ston><placew:ston>Glasgow for further tests.  These took place on 7^th April and consisted of about 17 small tubes of blood being taken for analysis; an in depth interview; consultation; questions and answer session and general health check with Dr Douglas.  Dr Douglas was reassuring, understanding and thorough in his delivery of the facts.  I asked all the questions I could think of, and those were many since I had written down everything I wanted to know in advance of the appointment.  Dr Douglas is a patient man and most understanding of my peculiar humour which I sometimes use as a defence when placed under stress!

 

It was therefore even less surprising when the next letter arrived 10 days later to say, “you are the preferred donor”.  I guess I had mixed emotions about the news.  On the one hand I was just happy to get the unknown out of the way.  On the other, there is an overwhelming sense of responsibility and fear that one might get it wrong.  All this coupled with the ‘what if something happens to me?” feeling which is natural, but nobody told me I would feel guilty about it.  So what next I wondered.  I made a call the next day and I was told I’d be needed one last time before the process took place so I would be flying up to <cityw:ston><placew:ston>Glasgow again on 27^th to see Dr Douglas.  I decided that it would be appropriate for my husband Michael to accompany me on this, the final pre-stage of the donor’s commitment.

We arrived at the hospital in good time and we were seen immediately.  Dr Douglas was again kind, helpful, <personnamew:ston>informative and straight talking when both Michael and I asked our questions.  At the time, you just want a straight ‘yes’ or a ‘no’ when you ask about certain aspects of the process but to be fair, everyone really is different and at times, only statistics can be offered to support the findings and outcome of the procedure effects to date.  This isn’t something you like to hear, but when you look back, it is for the best and the only fair way for the doctor to respond.  I knew it was likely I would be needed in <cityw:ston><placew:ston>Glasgow again in mid June but we left this appointment feeling assured and increasingly confident.  As we left the hospital, I asked Michael if he had any doubts personally about my going through with the process and he said, annoyingly without hesitation, “None whatsoever”!  It’s at that point I wanted him to hug me and tell me how brave I was and that if anything happened to me the world would stop spinning….. but he is a practical man who finds no use for drama.  Looking back, I am glad Michael at that stage was the strong, silent type.

 

Things went pretty quiet for a while.  My sister Susan went through endless transfusions, chemotherapy, good and bad news and several slightly odd wigs until we found a perfect match.  We talked on the phone frequently, and I gave her my 100% commitment.  I told her she need not worry about asking nor thanking me since I had made up my mind to be the donor and, although she must decide whether she wanted to go through with it, she need not consider my part in it since that was a given.

 

The go ahead was announced and I was asked to get myself up to <cityw:ston><placew:ston>Glasgow for the 18^th of June for donation day(s).  For a few days before that, starting on Saturday 14^th June, I was given G-CSF injections and although the process was a little complicated, the nurses and I had these down to a fine art by the second day, and I became quite the ‘expert’ for the local doctor’s surgery.  I genuinely didn’t feel much of an effect, other than a little stiffness which I would compare to over-doing it at the gym.  Nothing, honestly nothing to concern me.  I wasn’t allowed to fly after 4 days of injections so I was driven to <cityw:ston><placew:ston>Glasgow by my sister Jane.  We had made a pact some weeks before that whoever wasn’t the donor would take this time off work to be there, in terms of moral and practical support for the other.  We also made an agreement that in spite of how difficult the situation was, we would try to keep our sense of humour and not be offended if at times stress took over.  In short, we promised to make the best of it.

 

As a donor, there is one thing for which I was not prepared.  It’s only now I appreciate that it was all right to feel apprehensive.  It is all right to feel concerned for your own well being.  It is not selfish to wonder if you are putting yourself at risk.  When you are the donor, don’t be surprised if you feel a little ‘left out’ because it is only natural that the majority of the practical and moral support will be offered to the patient who after all, is likely to be very unwell whilst I was, and you would be, fit enough to help.  My strong advice is to find someone reliable that you can talk to, any time, and let them share your innermost private thoughts about the way you feel.  You will need that “best friend and confidant” so make sure ahead of the game that you have someone to rely on yourself.

 

The drive up there was a long one but not without banter and time to chat.  We arrived safely at the hotel next to the hospital and no sooner had we unpacked than we went straight to see Susan.  Remarkably chirpy we thought, and surprisingly good in terms of how she looked.  The ward in the hospital was a cheery and welcoming place, and the staff were accommodating and chatty.  After a while, we bid Susan good night and we went back to the hotel to eat and get to bed early.  I must admit, I did not get one wink of sleep.

 

The next morning, Jane and I had a coffee in the reception area of the hospital and were chatted a little before going through to the Clinical Apheresis Unit.  This is a place filled with hope, some anxiety and a little touch of fear to be honest.  One knows that everyone here is in some way affected by cancer and this is now a part of life for most of us, since everyone has had to ‘live with’ cancer in some way.  But it’s the sense of anticipation and discovery that I found overwhelming.  The dedication of those who work there, or in any cancer treatment centre and those who put themselves forward for clinical trials have all made living with cancer a reality, by which I mean, there are ways in which we can beat this terrible disease.

 

We were ready and our appointment time came.  We were welcomed warmly by those in charge of the unit and I was made comfortable and advised again about all that would be done, how long it might take and how I might feel.  To be fair, I was totally ready for that moment and I joked with the staff and smiled at everyone around me.  I felt good and I hoped that I would be able to do the best job possible for my sister; “bring it on” I thought!  The process took about 41/2 hours and oddly, it flew past.  I did feel a little embarrassed when I had to ask to go to the loo, but the bedpan was duly brought forward, curtains drawn and I wished I hadn’t had the second cup of tea!  We listened to the radio, I watched a film on my son’s portable DVD player and the time whizzed by.  The procedure was painless and the only discomfort I felt was psychological and I asked that the tubes and needles were covered over so I couldn’t see what was happening.  After that, I was fine.  The precious cells delivered and I was told I should rest, eat and wait for a call later that afternoon.  I was advised that it was most likely a second session would be required and a slim possibility of a third of a different kind the day after but again, I must “wait and see”.

 

Each and every person working in that area has a ready smile.  They are people who care and display a real sense of commitment.  When those doctors and nurses asked how I was, I know they genuinely wanted to hear the answer.  Around me were others doing the same thing as well as patients receiving treatment and each one of us would survey the other acknowledging why we were here, and silently appreciating what we were going through.

 

The wait for the call took for ever!  I was on tenterhooks for the rest of that day.  Finally, as my parents, Jane and I sat in the hotel reception, my mobile telephone rang at last and it was Dr Douglas.  He was, as ever, professional and correct but the long and the short of it was, we’d done it!  “We’ve got enough from you during that one session.  We won’t be needing you back tomorrow.  Well done” was the crux of the conversation.  I thanked him, put the phone away and excused myself in order to have a good, long, heart felt cry!

 

I was fortunate enough to be able to stay with Susan, along with my sister Jane, when the donation was being given to her.  It was all quite unremarkable to be fair.  We chatted while the liquid went through the tubes and I kept waiting for Susan to make some kind or extraordinary change or instant recovery.  My part of the process was over but for her, the next stage was now beginning and it was all up to her now.  The weight of responsibility is great, don’t get me wrong.  I kept wondering if there might have been something else I should have done; had I eaten or drunk something that would have an adverse effect?  My mind raced with all sorts of crazy thoughts.  They subside though and you know, as a donor, that you are doing a wonderful thing and at what cost?  None that I can think of, since life is priceless.

 

I have had my follow up checks.  My sister Susan?  So far, so good.  We are now in mid October and count our blessings every day.  I honestly recommend that anyone who can should consider registering as a donor.  I would not hesitate if asked to donate again.  This is my story but it’s a positive one and one that I have no hesitation in telling so if it encourages one more person to step forward and be a donor then I’ve achieved something.  I had nobody to talk to for practical advice, I knew nobody ‘real’ who had done this so now that I have personal experience, I will happily counsel, guide and encourage anyone who needs someone to be at the end of the phone when they want support.

 

We are all different.  My experience may be exceptional, but from what I have heard from others who have also been donors, it seems I am not so special after all!  My heart felt thanks go to the <placew:ston><placenamew:ston>Ayr <placetypew:ston>Hospital and the Beatson and all those who played a part big or small in giving my sister the chance to extend her life.  Beating cancer is a team effort and one that depends on sponsors, researchers, donors, doctors, nurses, family, cleaners, caterers and everyone in between and amazingly, by doing what I did I feel like I have helped in the bigger picture, and it needs many more of us to do so.  If you are in my position, consider this:  If I can, you can.  Trust me, I’m a donor!