FIL has leukaemia, not sure what to expect

[kwaker5]

My FIL has been suffering from bone marrow failure for about 6 years. DH and I have always guessed that he wouldn't recover from it (he is in his 70s) and that the hospital were really only 'managing' it. His blood transfusions have become more frequent, and over the summer he had a bone marrow biopsy and MIL says he has leukaemia (although they are not going to tell his sister, who lives with them ).

The thing is, he goes to all his appts on his own and doesn't really talk about it. We have no idea how long he's got, only that they have stopped the overnight iron chelation because the leukaemia will (to put it bluntly) finish him off before the iron toxicity.

It is difficult for us to visit them because they live about 250 miles away and there isn't room for us to stay over (we have a 18 month old and a 4 year old so doing a day trip is pretty hellish). I don't want to nag DH but I have said a few times that he should really go up and see them, even if he has to go on his own. He just won't talk about it though. DH still seems to think they will be coming to our house for Christmas but I am not even sure FIL will still be with us by then.

Has anyone been in a situation like this? Can anyone let me know what we might expect and what we can do to help?

Thanks

Bump.

Oh dear, my thoughts are with you, your FIL and your family. My dd (6) has leukaemia and she has just finished the first year of a 2-year chemo. From what I understand, childhood leukaemia is far more treatable than adult leukaemia :(

I am not really an expert on adult leukaemia. But my own experience is Dh's uncle, who was in his late 40s or early 50s (i was not close to him) had leukaemia about 4 years ago. He went through chemo, and went into remission, but then went on holiday overseas to celebrate and caught an antibiotic-resistant type of pneumonia and did not make it :(

Does your mil not follow him to your fil's appointments? Perhaps it's time that someone sat down with your FIL and talked about it? Or followed him to one of his appointments to chat with him and his Dr together?

From my experience, there are many things that you can do to help. For me personally, even just strong moral support from the family is so important to keep me going, so I have the strength to continue taking DD to hospital (which is very far from home) everyday, while working full-time at the same time. The most important thing is to be strong and be there for them in their time of need. I find it is very hurtful if people ignore our situation or pretend everything is hunky dory. Which it is not. I don't mean you have to treat them like they're dying, but just show respect for them and their situation, and make clear that you are always there for them, and ask how the treatment is going, and what they need you to help them with. I get particularly annoyed when people who know exactly our situation, ask me in an automatic cheery voice how I am. I mean, how the heck do you think I am?? It would be much more meaningful to ask how the treatment is going, if dd's suffering any side effects, if she needs anything to help lift her spirits up, if we need any help in anything, or even how I am coping with it all!!

Try not to take no for an answer if you ask FIL or MIL if they need any help, they may be shy to ask, or to specify what exactly they need your help with. For us, it's all the little daily things that I just don't have the time or opportunity to do, like pay bills or get groceries (hard to go out to crowded supermarkets as dd's immunity is very low both due to leukaemia and due to the chemo and where we are, online grocery shopping is not really available much),or get the car serviced, or clean the house after we've been to the hospital for chemo(since her immunity is low, we need to ensure her surroundings are always clean) or help bring some meals once in a while, or keep them company while they're in hospital, that sort of thing. Your FIL may need help in other areas, obviously, but these are just to give you some idea...

Anyway, this is a very good link that talks about how you can help. Hope it is useful for you too.

www.acor.org/ped-onc/cfissues/dodont.html

HTH

oops forgot the brackets. trying again..

www.acor.org/ped-onc/cfissues/dodont.html

oh and it's for kids, but you can get a general idea...

Kwaker

I have been where you are but the relation in my case was my Nan (God rest her soul). Her H had died a couple of years beforehand.

Not fair of your DH to clam up, he needs to talk about this situation openly with you (he may be in some denial). How is his relationship with his Mum and Dad, it sounds like as a family they do not talk openly and a lack of openness could cause great strife later on. You need to talk to them therefore as often as possible.

My nan was diagnosed with MDS which can cause leukaemia to arise. She was managed by the hospital and she was a day case. She sometimes had overnight blood transfusions of platelets. My nan rarely talked about her treatment as well (she knew what she had though) but remained cheerful and upbeat most of the time. Fortunately the internet was not around at the time because if it was I would have looked up MDS...

We used to take some of her favourite foodstuffs into the hospital; she enjoyed bananas and stout (both were advised by the consultant) and it was a long time afterwards before I could look at a banana/stout again without feeling sad. She often did not want to eat or drink very much.

We certainly found out who her friends were and who we could rely on locally to them, some people also shied away from her:(.

You are in my thoughts and prayers.

Thanks for your replies and sorry to hear your stories. The link was really useful. I think I am finding it harder because we don't live near them and can't offer much practical help. Also, because they are not my parents, it feels slightly awkward.

DH was planning to go up to see them (alone) this weekend but he wants to see what happens with the weather. I had to be a bit blunt in the end and say that if he doesn't make an effort now then the chances are it will be too late. I will suggest that he tries to persuade FIL to take him or MIL to his next appointment with the consultant. I think the story MIL got from FIL after his last biopsy was pretty muddled. I suppose being male and of an older generation he thinks he is doing the right thing by dealing with it on his own.

I second Hazlinh's post, well put.

I'm in remission myself from leukaemia after gruelling intensive treatment and 2 year maintenance chemo.

I wouldn't have managed without the support of my family and friends.

It's hard and scary when it's happening to you and not very easy to shove to the back of your mind, appreciating that it's hard, if not harder for family.