Bit of a tricky one

[spicyunicorn]

Hi all, I have just been diagnosed with stage 2 er+ and pr+ IDC. Not really concerned with my diagnosis or the treatment at the moment because it seems pretty minimal.

The only thing I’m worried about is telling my nephew who I have full time care of. He himself has gone through cancer treatment as he was diagnosed with leukaemia when he was 3.5 year old. He’s almost 9 now (in 2 weeks) and had 3 and a half years of a horrendous protocol with his cancer. I feel like my treatment plan is nothing to what he had to go through so I feel very thankful and positive my situation will be pretty easily resolved.

My only issue is telling him about it . He’s with me full time as my sister-his mum, died when he was just turned 5. She had a huge heart attack and died instantly at home. He was there at the time and as you can imagine this was unbelievably tragic for us all. At the time my nephew still had 2 years left in treatment.

My medical team have strongly advised I’m honest and open with him about my diagnosis but I just feel I’m going to really set him back. He is quite understandably very concerned with my mortality. My sister was 31 when she died and I am 5 years older. So the topic of when I’m going to die has been a regular one in our household.

I keep myself really fit eat really well barely drink and monitor my health with various fitness trackers to make sure my heart is healthy. So the breast cancer diagnosis even though it’s minimal I feel has definitely come as a bit of a shock!

Has anyone got and similar experiences with telling a child who has already had cancer themselves? If so how did they take it?

Thanks so much

[sal1]

Hi

That does sound like a very difficult issue, and the fact you are concerned for your nephew, speaks volumes about the thoughtful person you are.

I like your positive take on your treatment and prognosis, and hopefully that will come across to your nephew when you have that “chat”. It may ease his worries and concerns when he sees and hears how you are handling this situation.

From what you say, I’m sure you fine the right approach.
best wishes x

[spicyunicorn]

Thanks so much @sal1 I’m sure like most people on here have stated on this forum about telling their kids-he’ll be fine. And as he’s gone through cancer treatment himself he might take it better than expected?!

I just feel like I’ve make a bit of a rod for my own back with telling him how healthy I am to reassure him as my mortality has always been something he’s concerned with. Then now I feel like I’m letting him down or going back on my word with this diagnosis

He actually has a lovely therapist he’s seen before who I’ve made contact with. She’s just on holiday til Monday hence this forum sound off!

[maeverenner01]

Hey @spicyunicorn,

I hear you… Having to tell your nephew about it is really not an easy thing to do. First off, I want to say that you’re really brave for hanging on despite all that you’re going through. I’m proud of you for that!

I think the thing about telling your nephew about it… In my opinion, it seems like your positivity and love for him will help you make the best approach! To add on, I think that if you sound confident about yourself, your nephew can feel it and he will feel more confident too! Being confident (even if you may not feel 100% confident) can really make a difference in the impression you give and at least to me, that’s the best way you could reassure him that everything’s going to be ok! That, combined with your genuine love and words for him, will mean the world to him.

You got this! Sending you lots of love and wishing for your speedy recovery!

[beachfox]

You are clearly a very loving and caring person for your nephew. I’ll share my own recent experience of telling my children (9yo and 12yo) that I had breast cancer, and hopefully some things may be helpful.

I started by saying, “I have something important to tell you, and I need you to know I’m going to be fine. I’ve found a small lump in my breast and the doctors are going to remove it. It’s breast cancer. They found it very early and so it’s easy to treat.”

I then made sure to say “this is not like other people’s experiences of cancer you may have heard about. It’s not going to make me die or make me really ill”. (I had grade 1 IDC, caught very early, so I could be confident in making that statement). I repeated this point a couple of times in subsequent conversations, and we talked about other people we knew who’d had cancer and the outcomes.

I explained what would happen: that I’d have surgery to remove the lump, and afterwards I’d need some time to rest and recover. I explained some practicalities: that they’d be staying with their dad for a couple of nights and then back home to me as normal, and they’d still be doing their usual routine going to school, sports clubs etc. And I said that any time they feel worried or have questions about it all, they can talk to me about it.

My older son was particularly upset & worried, despite my best efforts to reassure him. At bedtime that night he asked, “are you sure you won’t die from it?”

I said, “if we don’t do anything about the lump and just leave it, then it will grow and spread and in 5 or 10 years time I will die. [I made up the timescale, just wanted to illustrate the general point.] So instead the doctors will just take the lump out now, to avoid that happening.”

He said, “Oh. OH. Well, that doesn’t sound too bad at all. You should have said that first!” (If only I knew )

After that, they were both fine. I had surgery 2 weeks ago which went well and they have been really great the whole way through.

Sorry for the very long post but I hope something in there is helpful or may spark off ideas for you. I’d also say that there’s no perfect way to tell someone – it’s a big shock however you say it. It sounds like you have a strong bond with your nephew and that will help you to have that difficult conversation.

I wish you the very best of luck xx

[spicyunicorn]

Awww thanks so much for all the encouragement! I’m really hoping he’ll cope as well as everyone else’s kids have managed. I honestly appreciate all the replies……Hope you have a lovely weekend

[spicyunicorn]

@beachfox thank you so much for the information! I’m sure my nephew will be the same and hopefully when I assure him I will be ok he’ll be ok with things.

We actually socialise a lot with lots of other kids with cancer as one of our local charities (the Joshua tree) gets together families of childhood cancer and we go to lots of fun events. Hopefully I can use that as a reference point and what happy and full lives the kids we know who have cancer have. So cancer isn’t too much of a scary word in our house and I think making the point of other people who are alive, thriving and well will be reassuring for him

Really appreciate all the time spent giving advice and I will absolutely remember these pointers! Thanks again @beachfox and have a lovely weekend

[spicyunicorn]

UPDATE- I told my nephew on Monday after I managed to speak to his therapist and I’m over the moon as to how he’s taken it.

It’s been such a huge relief now he knows and he’s been incredibly mature with his attitude towards it.

I think the most useful tips I got from reading this forum and people’s responses was timing (I told my nephew on a Monday so he has all week with me to ask me questions) and also making sure you are calm about telling them. I did plan to say something on Sunday but it ended up a bit of a stressful day and I’m glad I didn’t tell him when I had a lot on my mind.

Another really helpful tip was to directly afterwards to do an activity you enjoy with them. We played with some fabric I’d bought that day and made some clothes for his dolls. This was a great way to stay close and have an activity to do and that he enjoys and where he could as questions openly but have the distraction of the fun thing he likes to do.

Thanks again for everyone’s input it was so helpful! and I feel way calmer now everything is out in the open and I don’t have to sneak around

[beachfox]

So glad it went well and it sounds like you handled it fabulously! Xx

[spicyunicorn]

Maybe spoke to soon… he just came into my bedroom saying he had a nightmare I died .

But I think it’s really healthy he’s sharing these things and I can hopefully reassure him. And I’m sure there will be ups and downs when I actually start treatment and he can see I’m visibly not doing as well!

[beachfox]

Aw that must have been hard but I agree that it’s an excellent sign he feels comfortable talking to you about such things. I told my kids they could ask me anything or tell me about any questions or fears they had.

And yes there will likely be ups and downs ahead. I think one of the hardest things for those around someone with cancer is feeling helpless to do anything about it, so I’ve found giving people little tasks actually makes them feel much better (and is useful to me!).

For my kids, when I told them I’d need to do some special exercises 3x a day before and after the surgery, they then appointed themselves to check and make sure I’ve done them (and tell me off if I miss a session ) We joke about it but they take it quite seriously too and it feels like it’s helped them to feel like they are helping me in some way. Maybe your nephew might like to do something similar?

[lobber]

I think minimizing it as much as possible may help. They caught it early etc
Speaking from experience!

[spicyunicorn]

This is a really great idea and I think he will feel like he’s helping if he keeps me in check with the exercises. I need my arm in good working order as soon as possible. My job is a massage therapist so I’m hoping my recovery is a speedy one.

Been getting to grips with some of the finance side of things and I’m really not entitled to a lot. The macmillan website said I could get £100 a month and the pip people said my claim would take 3 months to even process. I run my own business so will have to employ someone to do my job too which is proving a nightmare!

My oncologist has said a min of one month off work and I won’t be able to work full time properly for a while.

How long would you say it was with getting your arm movement back again properly @beachfox?

[beachfox]

I had my surgery nearly 4 weeks ago. While my arm is totally fine in terms of range of movement, I can feel it’s not quite as strong as normal due to the ongoing internal healing in my breast/chest (it’s doing well and better every day though). So for example, today when I picked up 2 heavyish bags of grocery shopping I immediately felt a twinge in my left chest and remembered I shouldn’t be lifting something that heavy yet on that side! It’s not painful but I can feel it’s still a bit swollen internally, and definitely not back to full strength yet.

However, I imagine your arms/chest muscles were stronger in the first place as you work as a massage therapist, so that can only serve you well in your recovery. (Whereas I’m a copywriter so sit at a laptop all day!) My consultant said I can resume all forms of exercise after 6 weeks, so presumably that’s the point by which most people are fully healed.

The finance side sucks if you’re self employed.
I was also dismayed to realise how little financial support there is. One thing I have done, which someone else on here suggested, was contact my mortgage company to request a payment holiday while off work for surgery. As it happens, mine couldn’t give one because I’ve been with them for less than a year, however they were able to reduce my mortgage payments by about a third for 6 months, with no effect on my credit score. So definitely worth contacting your mortgage provider, if you have one, to explain your situation and ask what they can do. And if you have any credit cards or loans, worth asking them too for a payment holiday while you recover.