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After blood tests for what I thought was osteoporosis led to a diagnosis of myeloma a week ago today, I'm now feel like I'm almost watching my life from somebody else's perspective.
Since the diagnosis, I've had a bone marrow sample (no way did I think anything could be that painful! Lying on your side with two fractured vertebra is uncomfortable enough to start off with...), I had an ultrasound yesterday and still have lots of x-rays to come on Friday.
My follow up appointment to find out where things actually are is on 4th December, and originally my wife and I had resolved to not say anything to our two girls (aged 11 and 9) until after then. However, things aren't turning out how we expected. Although the girls accept that I'm having lots of tests because of my existing back problems, I think they have detected the changed atmosphere.
When a MacMillan advert came on the TV, my wife started crying and left the room. Watching children in need on Friday wasn't exactly helpful either.
I know we need to tell them, and we want them to know before they find out something themselves or start to think up ideas of what might have changed themselves, but it's so hard - I think I know what to say, but their reaction scares me. I've been just about holding things together so far (although I've had a few moments where I've just melted down), and seeing my wife so upset really hurt... I guess I'm just scared of hurting them too.
I'm going to get hold of the telling children MacMillan book, but I suppose the question I'm asking myself now is how long should we wait - I don't want them to find out something and then we jump in and tell them, and I guess there will never exactly be a perfect time to tell them. How can there be a perfect time for something like that?
That's an incredibly tough question - and I have no answers. I think only you can know your children, how they'll react and when to tell them. Also of course what to tell them. Kids pick up on things so they'll know that SOMETHING is wrong but their little imaginations could be going overdrive so sooner or later you'll need to tell.
It also seems to me that nobody ever has tests expecting the outcome to be myeloma. They always suspect something else first and when all the easy answers are ruled out, myeloma is what's left. My other said watching my step-father's bone marrow sampling was absolutely awful - so I can't imagine how painful it must be to have that done to you.
My suggestion - and I'm the 'kid' who had to be told, even if I'm 47 rather than 7 - would be to tell them you're not well, avoid the exact term of multiple myeloma and be glad that they are hopefully too young to google the scary stuff.
I also know what you mean about the cancer adverts. When I was first diagnosed - I had a relatively minor cancer - the last thing I wanted to see was all those adverts and every time the radio started talking about cancer statistics or anything to do with cancer, I had to turn it off. It seems you go from a life where cancer is not something you notice, to one where it's popping up all over the place. You'll start feeling you NEED to know just exactly which type of cancer dead celebrities had just to reassure yourself that it wasn't yours. (and of course most of the time the media don't know or don't tell)
Tough times ahead for you and your family but kids can be stronger then we expect. I'm sure the Mac book will be full of good advice and suggestions.
Just nipped over here when I saw your post. I am a mum and have cancer and my mum also got cancer when I was a teenager just after my dad had died. So I kind of see it from both angles.. I knew something was wrong and we were told that she was just a bit unwell and in hospital to rest her back for a few days. I knew something wasn't right and then assumed the worse as I guessed she must be about to die if no one was saying anything. I was worried she was really ill and then I was reassured it was ok and then I found out it wasn't actually ok at all, I was so angry and felt I couldn't trust people to tell me the truth. My mum actually lived another 12 years after her diagnosis and I struggled for a long time to trust those around me and to believe when she said she was ok. All kinds of things went through my head wondering what the hushed voices were and conversations that stopped when I came in the room. I thought it was about me and I had done something wrong or something
So, please tell them. They know anyway, children and they are much more matter of fact about things than we are. I know you are scared of hurting them, but if you don't tell them, they will worry and often children think you are cross with them and they have done something wrong. So, please don't wait. Its good to wait enough to have some news to tell them but don't leave it too long or their imaginations will run riot. The booklet is great and phone the advice line too. Of course you need to do it in an age appropriate way, but tell them.
If you are matter of fact and positive and honest about things, they will be matter of fact and positive and honest too and a few tears are ok too.
I had to tell my son and yes, its really really hard but its better than not and he dealt with it so well and is really positive about the whole thing now. And we are giving them courage to deal with difficult things in the future.
I wish you all the best with your results and teling your children
I'd tell hem right away. I know Myeloma cannot be cured ,but it can be treated, and you can last a long time. Yes those lumber punches really hurt. I do not want anymore of them either.
Hello Matt, how can you stop your young family feeling pain and anguish , how can you keep them from hurting, when ever they learn of your illness and how ever they learn about it, you need to be in control and ready for all the questions that will follow. Just like the doctors do to us Matt ,perhaps just drip feed a little at a time. We cannot take it all in and I am sure they need not at this time. Wishing you the strength you need at this time. With respect Paul
Thanks to all of you for your comments, experiences and encouragement. My wife and I told our children today. Our 11 year old understood and was able to express that she felt scared, frightened and upset, but that she hoped I would get better and wanted to help mummy more. Our 9 year old I'm not sure really processed the news properly. She didn't really react, but knowing her I think she'll be thinking it all through at the moment and then will start asking questions. We made it clear that they should ask questions whenever they wanted, and no matter how strange or odd the questions was, they should ask it. We also told them that we might not always know the answer, and that we had lots of questions and were asking the doctors, and that with cancer there aren't always answers yet.
Oh a huge well done!!!! So pleased you did it and it sounds as if it went really well too. Gosh I know how hard it is to do but well done for doing it and hopefully you will not be so stressed about them finding out now...
Thanks for letting us know how it went. We were all thinking about you.
Oh and as a teacher, let their school know too. A lot of schools have counselling services there now and they can also help them out if needed.
After yesterday I realised exactly how exhausted I was, and I've been off work today fast asleep... only to get woken up about an hour ago by a phone call from the hospital to tell me that my appointment for 4th December has now been moved forward to tomorrow and a different hospital :(
As usual for me, I've taken people's names down and hit Google to research who they are and what they do, and it appears that I'm seeing a doctor who deals with stem cell transplants, supported by a specialist Myeloma nurse.
On the bright side, at least we decided to talk to our children this weekend and not wait until the 4th, as I wouldn't really want to have talked about this sort of thing before bed time during the week.
Well done for telling the children, I told mine on the day I got the news, my son is 28 so slightly different but my duaghter is 14 and it's a very tricky age, the thing is, my son obviously being an adult asks frequently how I am and rings me quite a lot, my daughter is pretty much back to normal, or so I thought. It turned out that she just burst intio tears at school in class and nobody knew why, there were definitely no signs she was feeling any different. I rang the school because someone had told me I should tell them and they shared this little gem of information, I was shocked they didn't contact me. My daughter told the teacher that Mum had cancer and she was worried, the teacher kindly told her she wasn't the only one!! So please keep on top of things by discussing it regularly because your treatment will exhaust you on some days and it may worry them even if they do not say. She lost her brother when he was 18, so she knows how quickly things can happen.
My cousin has myeloma which is why I popped in on this board.
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