How do I tell ds that I'm seriously ill?

[difficultpickle]

I have a very rare form of cancer for which I will need a bone marrow transplant. Ds (9) was diagnosed with severe anxiety recently and one of the issues causing his anxiety is me being ill. What is the best way of telling him what is wrong with me?

I have experience of serious illness too and I think what I would do is be as honest as possible. Say what your illness is, fear treatment you're going to have and (if he asks) what might happen to you. I think you can try to be positive avid cheerful but being evasive and bit giving straight answers could make his anxiety worse. But I don't have experience of anxiety so just what I would do.

What treatment not fear treatment

By the way I should have said, best of luck with your treatment.

Thanks. I've been fairly evasive so far partly because I'm worried at the impact of the news but also because I didn't know treatment/prognosis. It doesn't help that ds is an only child and I'm a single parent (ds has no contact with his father).

Oh god, you poor thing. Hope everything goes ok for you.

When I was diagnosed with cancer, I told my kids the truth from the beginning. I had to, because I was so down, I couldn't possibly have hidden it. The news didn't seem to affect my 13 year old too badly. Perhaps she internalised it. My 11 year old was very upset.

I said that I was so upset because I really didn't want chemo as that fought the good cells as well as the bad, and that I didn't want to feel poorly because of that. It shifted the focus from the prognosis. I also said that hopefully the treatment would make me better. I said that cancer is a very scary word because, years ago everybody did die from it, but now many people are cured, and hopefully I would be one of those. It was likely that i would be. I also said that one in three people get it at some point in their lives and most of those are cured.

So whilst I didn't say I would be 100% ok, I focused on the positive and deflected my concern onto the chemo iyswim. I have now got the all clear.

I hope that everything goes ok for you. I know exactly how you feel. My concern was for my children, rather than me. It is scary, I know.
If your prognosis is bad, then take advice from the Macmillan nurses or a support line for your type of cancer.
Wishing you all the luck in the world.

Can you ask for advice from the people who treated your son about how to approach this with him ?
Wishing you the very best of luck with your treatment.

shewhowines that is great news. Hopefully I'll get that too at some stage. At the moment I'm worried that I will just dissolve into tears when I try to tell ds and that will upset and scare him. I think I need to let the news settle and try to get accustomed to it and at that stage tell ds.

I'm okay until I think about how I will tell him and then I just burst into tears. Have also got to tell my mum today, which won't be easy. Many years ago my dad was diagnosed with cancer and she completely went to pieces. I've got good friends who can help with the practical stuff of helping with ds, which is good.

It doesn't help that the hospital treating me is 2 hours away and my mum wouldn't be able to drive there or use public transport to get there (disabled). At some stage I will have to spend a minimum of 4 weeks there as an inpatient and potentially much longer.

But his imagination is probably running away with him at the moment. I got upset in front of the kids. It's ok for him to see you upset. Let him think that you are upset because you don't want to go into hospital as you will miss him and the treatment won't be particularly nice. Say that you want the treatment as you want to get better and that it will help you get better, but you are upset because of it. Say you are not worried about getting better because hopefully you'll be fine, but it's going to be a long hard journey and that's why you are upset. 4 weeks sounds dreadful, you poor thing.

At the moment he knows you are ill and is probably thinking the worst. He's worried because he doesn't know anything. Ask him if he's got any questions and take it from there.
Hope your mum takes it well. Can you tell her, treatments and success rates have moved on a lot, since your dad? - because they have.

You have enough on your plate with your own emotions, its even harder to deal with everyone else's. Handholding for you.

Can your doctor help with counselling for your son? Antidepressants/sleeping tablets for you? Low dose sleeping tablets were my saviour. Use them sparingly when everything gets too much. The doctor won't give you loads but they are great when you feel you can't cope through lack of sleep.

Oh how awful Im so sorry.

I would be very tempted to lie to him as he is so worried.

Maybe say I was going on a training course when I was at hospital..

Of course that may not be possible if there are going to be obvious side effects which make you look unwell... Sorry I don't know much about it.

Im very sorry for you, horrible for you both, but he is lucky to have a mum who is so concerned for him.

It may be that your mother is stronger now - she'll want to look after you.

If possible it might be best to have her there when you tell Ds, so he never feels he's alone in his worry. And I'm sure you'll try to let him understand that diagnosis is a positive step, because now you can get on with being treated. He may even come to that conclusion himself.

Good luck today.

www.youngcarers.net/search/default.asp?zoom_query=cancer

definitely get support for your ds

So sorry, this sounds horrendous. I hope your dm manages to support you.

I would second telling your ds with help. Is he having treatment for his anxiety. School etc need to know, too. It seems likely that initially his condition may worsen.

I think Macmillan will also be able to offer support, too so do contact them.

The hospital admission sounds very hard. I'm sure you've already considered Skype etc for maintaining daily contact with ds. I would suggest contacting your local volunteer centre as they will almost certainly be able to help with hospital visits etc. driving people to and from hospitals is a really common request and there are lots of kind volunteers willing to do this. You just contribute petrol money.

Very best wishes to you both. Good luck.

I think I will be stronger telling him by myself as I'm not sure my mum would be able to hold it together.

He has his first appointment with the psychologist this evening so we will see how that goes. I think I will tell him at the weekend as that way we can take as much time as we need rather than having to worry about bedtime and school the next day. I will hopefully have calmed down enough by then.

At the moment I just feel incredibly tearful which is silly. I have known since August that my bone marrow is failing but I'd always been under the impression that I needed a few drugs to help it resume working. The worst case scenario was chemo and a transplant. I hadn't even contemplated that as I assumed if I really had cancer I'd look unwell. I don't. I look perfectly healthy. My red cells were low so I had a transfusion last week and now my readings are almost normal. I've been told there is nothing they can do to restart my bone marrow and the only option is a transplant.

It explains why every health professional I've seen has been so lovely. I did think their loveliness was a bit odd as they seemed to be talking to me as if I were seriously ill (I remember my father being spoken to in the same way). I wondered why they were talking to me like that and felt a bit daft yesterday that I hadn't really realised just how ill I am.

The only people who have been very unhelpful is my GP's surgery. The consultant had written to them to ask for historical info from my records and for me to have some tests locally. The surgery took over two weeks to write to me (2nd class) to say I needed these tests. When I said that they should have been done sooner the GP said that the letter wasn't marked as urgent. Yesterday the consultant said that every communication from the haematology dept is urgent and the GP should have known that. Fortunately the GP won't be involved in my on-going care/treatment as it will be split between the hospital in London and my local hospital. It has made me think about moving to another practice (I've been at the same one all my life).

Being tearful is not silly. You've had a huge shock and you need time to come to terms with it. There will be many ups and downs to come. Everybody goes through a whole range of emotions. There is no right or wrong way to feel.

Telling him at the weekend is ok but actually, going to school and everyday life will distract him. Children are upset, then get caught up with something else. They don't dwell on things like we do. Ds was upset often but was not continuously upset.
Even if you think you are keeping up a good act, children pick up underlying vibes. The truth is often less worrying than their imagination. Play it by ear.
See how it goes at the psychologists. See if you can have a quick private word with her (or write a note to give her at the beginning) and ask her advice. Perhaps that should be on the agenda for next weeks session.

Good luck

Just to say I think that SheWhoWines is giving excellent advice...

...and to wish you the very, very best of luck. It's good that you have supportive friends, and totally normal that you feel shaky and tearful.

Also, the ladies on the Tamoxifen thread (who have a variety of cancers, not just breast) are absolutely wonderful on support, advice, parenting, anxiety, and just about everything else. Including cake

I know they would welcome you if you wanted to join in.

SWW, congrats on your all clear and all the best to you too.

I agree with passing her a note. Maybe she will even call you to advise.who knows?

OP when I was very ill several years ago (not cancer but something quite serious) I spent several weeks in hospital too. After coming out, we spoke to the DDs and DD1 who was I think 6 at the time had made up all sorts of stories in her head about what was wrong. I therefore strongly agree that whatever you tell DS, he already will have imagined 1000 times worse.

We were able to talk to the DDs with the help of a psychologist, which I found massively helpful. It meant I could concentrate on their reactions and really listening to them, without panicking about what to say and worrying that I was going to say something that was more damaging to them.

and I'm very sorry about your diagnosis.

Thanks. I've decided to wait until I get closer to the point of needing a transplant. It could be months away and I don't think it is fair to put that worry on to ds when there isn't a need at the moment.

He saw the psychologist tonight and from listening to him talk to her he seems to think that the bone marrow biopsies are what is making me ill (I've had 3 in 2 months). I will email the psychologist so she will have the opportunity to talk to ds about my illness to see if he knows more than he is letting on and what his specific worries are.

One day at a time.

Do you think he got on with the psychologist?

Hard to tell. He was very chatty and friendly with her and when we walked back to the car said he wanted to see her again. By the time we got home (30 mins later) he said that he didn't want to see her again and he's had trouble getting to sleep. Not sure if that is related or not. I think we have to see how he gets on next week. I thought she was lovely and had a really engaging manner about her that seemed to work with ds.

Op - in my experience telling a simple truthful explanation is the best.

**waves to shewhowines. Ds1 was v quiet about my recent surgery and when visiting me, his only comment was "are you going to die". Once it was explained that it was preventative/curative he was happy but he had internalised all his feeling and they were only expressed through his fear of death. Ds2 on the other hand has had tears & snotters about being apart from mummy and won't leave me alone now I'm home.

Obviously my surgery is nothing in comparison to your treatment but by being honest and open and allowing your DS to explore his own feelings at his own pace prevents his imagination running wild.

I think you are right to email the psychologist. She is the best one to advise you, as she will get to know your son well.

I also think you should go over to the tamoxifen thread. I didn't find it until after I was cleared, but I can honestly say that being part of the hysterectomy thread has been great. Thanks fled There's nothing like talking to people who are feeling the same emotions, and experiencing the same thing, as you.

All the very best for the success of your treatment and hope DS is ok too.

He was very chatty and friendly with her and when we walked back to the car said he wanted to see her again. By the time we got home (30 mins later) he said that he didn't want to see her again and he's had trouble getting to sleep.

This sounds familiar! The therapy process sucks, the evening after therapy can be awful - usually because the entire point of therapy is to cope with/rationalize/overcome difficult (and often painful) issues as appropriate. Experience with my DS has taught me that things tend to get worse before they get better during the process, they also have a habit of making some improvement, followed by regression, followed by a breakthrough. Therapy is tough for the person going through it, but it's exhausting for those who are supporting them!

Oh, and I really home your treatment goes well.

Thanks. Haven't emailed the psychologist yet as spent today telling those that needed to know at work and feel exhausted from that. Only one person had a clue how I was feeling - 'are you scared?'. Everyone else just commented on how 'brave' I seem and said they would support me.

Biggest worry apart from ds is financial as I will only get three months paid sick leave and will need a lot longer than that.