This is a difficult topic and I hope I don’t upset anyone by raising it…
Basically I’ve just realised I need to renew my driving licence and consequently, after starting the process, I discovered I am required to answer some questions and make a decision about organ donation.
I have Multiple myeloma. I am guessing (but I don’t know) that my organs would not be of use to other people? Although the guidance says that uncertainty about medical conditions is not a reason for opting out, it made me wonder, @BloodCancerUK-SupportTeam, whether there is a way of donating organs or one’s body for Myeloma/Blood Cancer research? And what implications that would have for loved ones at the time of passing?
I wonder if anyone else has been vexed by this question and what you decided? Please ignore and read on quickly to another post if it’s not a good time to be considering this.
Hi @Coastgirl. I don’t have myeloma but have lymphoma. I find this really interesting. I was really upset when I had to stop donating blood and couldn’t donate my organs. I’ll be interested to see what Blood Cancer UK say and if there are different options in order to support research etc.
Thanks so much @Coastgirl for raising this issue and I have to admit I have just opted in to organ donations and presumed that my medical history would be looked at before a decision was taken whether it was appropriate to use any organs or not.
Yes, I would be very happy for my organs to be used for medical research and I have stated that in my will.
My family has no objections.
Yes, if I could leave my organs for blood cancer research I would be happy to do that and I would state that in my will, but I am not sure what that means for opting into organ donation.
I would like to hear others thoughts and thanks so much @coastgirl for having the courage to post this. Look after yourself.
I’m surprised, @Coastgirl . I recently renewed my driving licence (not that I drive any more [not Chronic lymphocytic leukaemia (CLL) but cerebellar atrophy] - it’s just a useful form of ID), and don’t recall having to answer those questions. When dentists ask ‘Has your blood ever been refused?’ I always answer ‘No, but it would be’. Not much help, I’m afraid.
Blood Cancer means that you cannot be an organ donor and you have to opt out of the programme. What we have done is to arrange for our bodies to be donated to Edinburgh University Medical School to be used for training and/or research. It takes a while to organise so it should be sorted out well in advance so everyone knows what to do.
Thanks @UncleRoy that is a very useful response. Look after yourself
Hi @Coastgirl hope you’re doing okay. Thank you for creating this difficult but important topic.
You might find this page helpful, particularly the medical conditions section - Who can donate? - NHS Organ Donation
Also, Cancer Research UK have a webpage about donating organs to research if you’d like to take a look - Donating your body or organs| Cancer Research UK
Thank you for posting this link @Alice_BloodCancerUK
As it looks as if my organs wouldn’t be useful for transplants. I will have a look at the Cancer UK webpage.
Thank you @UncleRoy for the caution that it takes a while to organise these things.
Hi I have lymphoma. Its actually a bone marrow form of lymphoma which causes the bone marrow to produce to many / corrupted type of blood cells.
I also cannot either give blood or donate my organs.
I have decided to bequeath my body to the Faculty of Biology, The University of Manchester for Anatomical Examination, Education, Training and Research.
I have the forms here and have discussed it with my family who seem rather non plussed. Maybe the thought of my passing on is something they don’t want to face.
Anyway for some reason I cant fill the forms in. I want to but I just keep thinking Ill give it some more thought. Seems like I dont want to think about passing on either.
Hi @art305 thanks so much for joining us on our forum and having the courage to post on this emotive subject.
Perhaps as you say it is a bit of a shock to your family and they do not want to think of you passing on, give them time to think about it.
You have got the forms, there is no need to do anything with them until perhaps you have spoken to your family again and/or you feel completely ready.
We are here if you want to put your thoughts and feelings in black and white and if you would like to talk to someone the Blood Cancer UK support line is there for you.
Look after yourself and please keep posting, I look forward to hearing more from you.
Thank you so much for your post. You’re a step further than I am because you’ve thought about something specific even though you still have the forms to complete. You have motivated me to look into this further. I asked the question at the top of this thread and then haven’t had the courage to follow it up. It is such a difficult and delicate matter. In my head and my heart, I know I would like to give something back to medical research after all the great new treatments that have helped me so far and your post has spurred me on. Whatever you do or don’t decide, I hope it will give you a sense of peace having looked into it and that you can carry on and enjoy each day.
That is exactly how I feel.
I will fill and send the forms off,
Some really interesting avenues to look in to!
Sorry for not replying to the many comments on this subject.
I have had another serious matter arise that has taken attention.
I will be filling the forms in tomorrow and posting them Its to late tonight (not an excuse) I will do them with my wife we do almost everything together.
Hope you’re ok. Take care X
I think I’ve erred on the side of caution and just assumed that there’s not much of me that anyone would want as I’m not exactly in the greatest nick. I really admire anyone who wants to donate and for looking at ways around our condition.
Inspired by @art305’s post, I searched for information on how to donate my body to medical science. I was disappointed to find that only a few hospitals do this kind of research and they stipulate that you need to live nearby because of the cost of transport. None of those listed that I could find are near where I live.
Then I was due for a post-Stem cell transplant consultation at Kings KH so I decided to ask the consultant if they need bodies for Myeloma research. I think he was taken aback and thanked me for my ‘kind offer’(?!), however as he then explained, most haematological research is conducted using tissue from bone marrow biopsies or blood from blood tests and he said researching with bodies was too expensive and not that helpful re Myeloma.
Well if any of my bone marrow tissue has been useful that helps make up for the pain of having those horrible tests done but meanwhile I am no closer to my quest.
Here ends (probably) this rather macabre but well-intentioned post.
I do hope @art305 that your other serious matter has resolved, if it can.
Thank you @erica, @Alice_BloodCancerUK @Nichola75 , @UncleRoy @art305 and @Franko for all your comments around this question.
Thanks so much for all your research @Coastgirl.
I must admit I have not done any research, yet.
Take care and look after yourself.
Thanks for the thought.
The other serious matter will take some resolving.
It appears I have a SCC on my left cheek and a BCC on the right near the ear.
These are forms of skin cancer.
Anyway I have made my decision and posted off the forms.
I bequeathing to Manchester University for medical teaching and research.