Incurable cancer in my 40's AMA

[BodysBroken]

I'm a 43 year old mum of 2 with incurable breast cancer.

I'm very comfortable speaking openly about it and thought this may be helpful for others with similar diagnoses, friends and family supporting loved ones through it, or anyone who's just curious.

I'm not looking for sympathy, no question is silly and I don't take offence easily.

I'm a regular user but have name changed as I'm sure I'll be recognised.

@BodysBroken thank you for starting this thread and your honesty. I have a few relatives who are living with cancer and I never know the right thing to say.

Sorry this is a completely selfish question. I hope you don't mind. You mentioned critical illness cover, how much would have made a difference to you? I have life insurance but not the critical illness element because it was so expensive but after reading your thread I'm rethinking this.

Is there anything you wish you had done pre-cancer?

I wish you and your family all the best and I hope you have many good years to come.

Thanks for all your thoughtful replies and questions. I'm actually really enjoying the discussion.

I'm about to fall asleep and I'm hopefully going out later so I'll respond to everyone either this evening or tomorrow morning.

Thank you for starting this thread.

I'm now 4 months into my cancer journey, I am also at Stage 4, cancer is inoperable. Half way scan results show that treatment is working very well so far which is very positive.

I find myself obsessing about prognosis - I know it's often impossible to predict and anything can happen, but I kind of feel that if I have say 4 or 5 years left, then it would be good to know. At least I can stop fretting about longer term finances and whether I have enough money to keep the heating on in my 80s !!

At the same time, it's very hard to think that I may only have a fews year left. I have found this the hardest thing to talk about - in fact I don't talk about it to anyone. I worry that my friends and family find it a very difficult and uncomfortable thing to talk about and just want to be positive and expect me to live for many years yet.

So I don't feel I can open up about my worries. I don't have children, so in this respect I am lucky to not have to bear the additional burden of worrying about how this will would impact them.

Interested to hear how others on the same journey feel about this and handle it. Do you talk about this with anyone? I've been recommended talking to some of the local cancer support charities and have been put forward for extra support from a counsellor but there will be quite a wait on this.

And in all honesty, I'm still not sure whether I'm actually ready to have any conversations about longer-term prognosis, which just adds to the turmoil.

@Baileysandcream apologies for butting in since it’s not my AMA but it sounds like you’d do really well to have some counselling around this. Loads of cancer charities offer it there’s bound to be one near/around you x

Hearing from all these women dealing with BC in their forties makes me wonder if the screening age should be lowered. Routine mammograms start at age 50 here in Scotland. I get that there is huge cost involved but women in their forties are more likely to have younger kids etc, not to mention the costs of extensive treatment.

OP you really do sound amazing. I know MN hates calling cancer patients 'brave' but I think your choice to protect your kids for the time being is incredibly brave. I hope that you have many good years ahead of you, and that your family thrives.

@Baileysandcream I've been fortunate enough to attend a few retreats which have been amazing and introduced me to some fabulous, supportive friends.

There is nobody who understands this shit show better than someone else going through it. Regardless of how much someone tells you they do.

Make 2nds count
Rainbow Valley
Maggies centre

Find your people, your new people will bring you more comfort than you'll ever know.

And reach out on here when you need to.

@MorrisZapp I chose a different path and our kids have been included / involved to a greater degree.

Ours might have been older though.

And I lost both parents to cancer. They told me nothing, even though I was an adult. My brother and I felt isolated, blind sighted and detached and I swore we would never treat our kids like that.

A very person choice that works for us and our family - sadly there is no 'one size fits all solution to these problems.

And doing what you're told / advised by medical professionals isn't brave at all when you're just doing your best to stay alive and stay well. That's why the cancer community objects to phrases like brave / battle / warrior etc - it implies we had a choice when we absolutely didn't.

Hope that helps

Don't forget coconut milk - a Colleague (who was a lovely person and I suppose meant well) used to bang on about it EVERY time she saw me (DH had leukaemia)

Thanks so much @ChocoChocoLatte Maggies are on my list to visit, I've heard such good things about the support they offer.

I know our journeys are so individual but I think you're right about finding comfort in talking to others who really understand what you're going through.

A retreat sounds like a very interesting experience, not something I'd considered (or even thought of!) but might look into this, thank you !

@Baileysandcream please do. There are operated with no costs to those attending or obligations to join in etc.

I found both invaluable and managed to find raise since to pay forward my space for both charitable organisations.

Had I needed to pay, we couldn't have afforded it. Unfortunately, one's health isn't the only thing cancer strips you off and I doubt our finances will ever recover.

We now have a lovely WhatsApp group stemming from our retreat and it's a safe place to go to discuss anything without others tiptoeing around you OR you tip toeing around them.

One of the hardest things I found is dealing with others emotions / expectations. It's exhausting!

@MumofSpud coconut milk is a new one on me - I know I have some in the cupboard so will need to look it out immediately lol

Manuka honey was another one / I was sent several jars lol

I hope you don't mind me joining? I would just like to send my love to you all and also second Maggies Centre. It truly is an amazing place.

My question, if anyone can help is to do with treatment. My husband has been diagnosed with rectal cancer ( stage 2).
Treatment plan is radiotherapy and chemo tablets, 5 rounds of chemo then an operation.
Long road ahead but they have said it is curable, although will be life changing.

He has been to see a 'holistic therapist'. He recorded the appointment ( with therapist permission).
I listen to the recording and I'm absolutely horrified. This man is encouraging my husband to not have radiotherapy and chemotherapy. He states he can cure him with vitamins, diet, IV vitamin infusions, Rife machine and off label medication.
He has convinced my husband that chemo will make him worse and it's all a conspiracy to make money!

I have tried to be kind, listen and convince my husband that this guy is a quack. I've argued, cried and shouted and I'm now at a loss.

My husband has now said he will have radiotherapy because I and my children have pressured him. Does not want chemo and will not tell oncologist all the potions he is taking. Including off script meds. Apparently I am a "stupid woman" for believing everything the doctors are telling me.

Any advice would be appreciated.

@Benny33

So sorry you & your husband find yourself in this position and I mean this in the kindest way BUT I think your query merits a brand new post of its own.

The majority on here have no experience of a personal cancer diagnosis and those of us who do, don't have specific knowledge of his.

I certainly have no experience of his actions and therefore advice to give, am so sorry.

Please start new thread and hopefully some brilliant MNer will be along to help very soon

Thanks for your response, that makes a lot of sense.

It sounds like you have a good balance with what to tell your kids.