Blood cancers and end of life care.

Thanks for posting this. I have been told treatment options are no longer available for my relapsed AML & I am now accessing palliative care. So far professionals have been helpful & proactive. Finding the unknown scary & saying goodbyes tough. I hope you find some peace for yourself.

Hi Jane

Thanks for letting me know about the article. I am well aware how quickly my blood cancer can turn into an agressive leukemia. 

I've spoken to my wife about that and made sure she understands but as she says, I don't look like I'm going anywhere soon. 

It is our wish that I die at home, so much so that shortly after my diagnosis 4½ years ago, my wife spruced up our bedroom, that when people came to see me when I was ill, the bedroom would impress them. Priorities, yeah? And as I'm an avid gardener,  the grassy bank outside our bedroom window has had a couple of dozen daffodil bulbs planted a year ago and we have around another 50 to go in this month so the display should be even more impressive next Spring.  

I understand the point also in the article about getting close to our haemotology team. The doctor who told me the bad news was the same haematologist that had been treating me for haemachromatosis for about 4 years, the treatment for which indirectly led to the bone marrow cancer diagnosis. He is married to a Malaysian lady and one of my sons is currently dating a Malaysian girl. When he returned from Malaysia each year he used to show me photos of various Malaysian fruit and vegetables because he knew of that hobby, and we both are into bee keeping. He also used to attend our national Autumn Show in Belfast to view my veg entries, I was quite successful. 

I believe therefore because we were so friendly that he found it very difficult to inform my wife and me about the diagnosis, to the extent that he wrote the diagnosis of the cancer on a piece of paper and slid it across the table to me, adding that he thought I should look it up when I got home! . 

I'll send my wife the link too, it makes interesting reading.

Thank you Jane, apologies for the long reply.

Tvman x

Hi McIg

I see from your profile that you had MDS which unfortunately has turned into AML, which is exactly what I was referring to in my previous reply to Jane.

My MDS because of low red blood cells and therefore it is diagnosed within MDS as Refractory Anaemia (RA).What about you McIg?

Kind of nice to know that someone else has MDS and you understand the emotional rollercoaster ride that I am on although I'd rather not have met another, if you know what I mean.

Take care

Tvman

Dear McLg, I’m so glad you found the article useful. I have read your profile and can see you have been through a lot. I am also receiving Palliative treatment and attend my local hospice once a week for emotional support and comradeship from fellow patients, which I find incredibly helpful. Because of the way blood cancers can progress I often feel like I’m walking about on the thinnest of thin ice, unfortunately the answers I would like from my doctor can’t really be answered with any certainty so I have been encouraging my haematologist to incorporate more psychological support into patients treatment plans. Are you receiving the emotional support you feel you need ? 

best wishes and many thanks for your reply.

jane

Dear tvman, it’s great to hear you have such a good relationship with your doctor, it makes such a difference if you feel a connection on a human level. I think in general there is a lack of knowledge amongst blood cancer patients in regards to the subject matter in the article, which is understandable if you are stable and your treatment is effective, but as you have rightly pointed out when the worm turns it can turn quite quickly, so it’s worth knowing about what may happen, making any arrangements you think are necessary and then just getting on with life. In my own little way I have tried in my contacts with medical professionals to encourage them to treat blood cancers patients more holistically and recognise that even when we are “well” we are living with a certain amount of psychological pressure caused by the lack of answers. You seem to have found the balance in your own life between optimism and realism and that’s a good way to live your life given your own set of unique circumstances. Thank you once again for your contribution.

jane

This thread is very timely for me.  Had stem cell transplant for AML in June 2017. Was completely back to normal by August 2019 then relapse. Just had a round of chemo in hospital which had no effect so cant have a second SCT.  Going home today but will have further chemo as outpatient to buy me more time.

I live alone so its hard work wading through the various people I have to contact to get support set up. Doesnt seem to be a one port of call.

Palliative care people in hospital say I can have outreach support from hospice about 10 miles away with view to going there when I cant cope on my own.

But doctor says it probably wont be like that. He thinks Ill be pretty much ok until I need sudden acute attention. So better if I stay within my current 20 minutes of hospital. 

I also dont know how blunt to be with my friends. Ive told a few I feel can cope. I dont want people who will be wringing their hands and praying for me when it would be far more help if they would offer to do my laundry.

Tessa

Dear tessa, I have been reading your profile, and it’s obvious you’ve been through an enormous amount both physically and emotionally. 
im in a slightly different position to you in that I also have dialysis dependant kidney failure, so when the blood cancer gets the upper hand I will most likely stop my dialysis as this will be a more controlled situation to handle and I should be able to stay at home or if necessary go to the hospice to have my symptoms controlled. I agree the system is siloed and dysfunctional which makes things very difficult, I’m very fortunate that my hospice is close to my home and I attend once a week for emotional support. As for your friends, unless they are doers it’s probably better to tell them the minimum as I agree practical support is what you need right now, platitudes don't get the shopping done ! I did all the “administrative “ stuff months ago just so it was out of the way and I could get on with living my life, which far from being normal is still a life worth living. I am here to support anyone who is in a similar situation and I posted the article for people just like us, so thank you for contributing to the thread it means an enormous amount to me to know i have connected with another blood cancer patient.

best wishes 

jane

Hello Jane

Thanks for your thoughts. I revised my will last year and recently pre-paid for funeral. Just final service plan to do. I get a bit weepy but I enjoy keeping busy and deciding what my favorite poems are. Fortunately I have some friends (we are all over 67) who accept we all go at sometime and have been makiing similar long term plans for themselves. So we have had very frank and often entertaining chats on all the options. I guess my sense of humour is a bit dark anyway.

A slightly specialist problem I have is that I am an amateur writer. I was hoping to get some of my short stories and poems self published as an anthology. It is purely for vanity, i was only going to give copies to friends and maybe sell a few locally.

However I dont want to do it too soon as I am still writing and my best work may be yet to come. Not sure whether to plan it as a posthumous project to raise funds for something. Then there is the problem of tasking someone to do it.

My other dilemma is how to arrange to tell all my friends and correspondants when I've gone. Some are far flung and I only have email address. I guess I can leave a list for my executor to deal with. They all know Im ill. We have been corresponding a long time in some cases and I feel I would like to give them some closure not just disappear. Guess this a new problem of our online social lives.

Tessa

I understand completely about online communities. I have 140 Facebook friends from something I’m interested in. I’ve met many of them personally at events and although some know I’ve been ill, they don’t know the details. How do I let them know when there is something to tell? I might just spill the beans if and when there’s no chance of meeting any of them again. It’s quite liberating to be able to go to events and chat about anything and everything except cancer but that means people may be shocked when they find out I’m incurable. 

Dear tessa, I think it’s a lovely idea to publish your short stories and poems, at my local hospice we have a gift shop, if you wanted to do it to raise funds, you could self publish and donate them to a hospice to sell, perhaps writing poems or stories about your local area.

in regards to telling your friends that you have passed away, perhaps you could write an open letter in email form saying everything you would liked to have said to them individually and give your executor the relevant email addresses so that the message can be sent to everyone at the same time. That way you could write something which was an expression of who you were and how much their friendship meant to you. 
Don’t be shocked but I decided not to have a funeral, and instead I’ve donated my body to the medical school and in solidarity so has my husband, I have such a rare disease it seemed a shame not to do something that might help other people with the same disease in the future. 
like you I have a line in dark humour which I reserve for those times when tears will not suffice, it has rescued me many times from difficult moments.

best wishes

jane