Cancer Support Thread 84 - gently crunching our way into autumn

[mowly77]

New thread as old one about to be full. As those who have been around far longer than me have said: Welcome. Pull up a chair, help yourself to a biscuit, a large gin, or a detox tea. Or all three. This is a supportive thread for anyone with cancer to discuss how things are going, ask for advice etc., vent, scream, or discuss life in general.

Please feel free to join for support if you are going through tests as well, hopefully they will come back all clear, but if not we are here to hold your hand through the journey.

I have to go to the hospital for a covid test two days before my chemo every time. I assumed that was standard - obviously not. That's shocking @Thymeout - what a life.

@dotty2 I think the message has got through to medical teams that cancer patients struggle a lot psychologically when they finish treatment. It seems to be putting the chart before the horse that they are addressing this at the very beginning of treatment though. I had the same with repeated predictions of my collapse after radiotherapy but that never happened. I think the intention towards you is well-meaning but rather tone deaf. Surely it would be more helpful to ask what help you need rather than decide on your behalf?

How are you feeling?
Top x

It's only a minor irritation, but yes - a bit tone deaf. I'm OK, on the one hand dreading starting chemo, on the other hand keen to get a step nearer towards the end. Trying to plan some small nice things to look forward to.

Another one with a random gift of covid tests here … but never had to do a test before chemo 🤷🏻‍♀️

Well, got my cervical screening results back and all clear!
I was told it would be 3 weeks for results, it’s only a week ( oh the fear of early results)
Very relieved.
But the journey seems never ending.
I know you all understand.
Thank you for being here.

Oh okay, now I no longer feel special 😭.

Could we put in a request for aromatherapy bubble bath next time do you think?

@Podgedodge - cancer, a never ending round of opportunities to be terrified by yet another thing....

@Podgedodge that's amazing news on your smear results.
😊

I'm re reading this thread a lot to try to get to know you all a bit better.

@Podgedodge bloody great news about a clear screening!

xxx

You'll have been coded as having a diagnosis and it will have triggered a cancer review invitation, I completed the questionnaire but said I didn't want to have a review because at that point I hadn't even had surgery.

Blimey, some of you actually have GPs who are giving advice! I was diagnosed with cancer 3 years ago, and have had no input from my surgery or contact.

Same here - no acknowledgement from my GP until a phonecall over a year from diagnosis saying they've noticed I've been having regular blood tests! Yes, that'd be for the chemo!!

My surgery started up several groups since covid for carers, depression, diabetes, autism, obesity, etc but nothing for cancer. I fed this back & seemingly in response they posted on their Facebook page with links to Maggies & Macmillan, which is great but I think a very local touch point to direct people would be reassuring, as it would be a familiar setting to many so easier to make contact. Rant over!

I had one call from the GP at first diagnosis, but nothing since, of course, they don't really know us now in the same way, I'm just a name on a screen. But then I didn't even have a call from the hospital when the Royal Marsden sent through the report telling them they'd missed three things, including a completely separate cancer, on the pathology report, so my expectations are fairly low.

I have been incredibly lucky with my GP, they phoned me after my husband died to offer condolences then phoned 3 months later when my diagnosis was confirmed.
She has offered not only support verbally, but face to face appointments if I feel I need them.
I love my Doctor!

Hello - Im 45 and discovered a lump on the 28th Sep, was diagnosed for sure 18th Oct with grade 2 and triple pos tumour on left boob, had MR scan on 20th, then an ultra scan which uncovered one further suspicious lump on same breast. Op scheduled for 08th Nov; complete mastectomy with reconstruction. I opted for mastectomy as just want all tissue removed to be sure and will get the right boob done at some stage privately with same consultant. Have my third meeting with consultant tomorrow to talk through. My brain isn’t quite there yet but I’ll also need targeted chemo due to her2+. J have a 12 yr old & a 3 yr old. 12 yr old away right now with family abroad for half term. I’ve been taking diazepam intermittently to get through this stage of unknowingness, prescribed on request by my GP. Does anyone have a experience of telling their older children ? She’s the same age as I was when my dad had a life changing stroke (couldn’t talk, walk etc). The affects of my Dads stroke traumatised me and I’m terrified this is now going to happen to my beautiful little girl who shouldn’t need to be worrying about her mum. Any experiences or resources you can share would be appreciated. Sending hugs to all of you on this thread.

@incognitodorrito this sounds extremely triggering for you, on top of dealing with your diagnosis. I can't give any advice or point to resources as I'm only recently diagnosed and have a younger child. This thread has already been great support to me though.

Sending lots of love

Sorry you find yourself here @incognitodorrito - the first few weeks are remembered by many of us as being particularly terrifying. I have an older teen so I haven't told a 12-year old but from what I've heard from others (and my teen was like this too) kids can often be quite clingy to begin with but then back to "There's nothing to eat mum" quite quickly. I think a lot of us have given factual information, trying to be upbeat and emphasise that it may be cured if that's true, without being unrealistic. Of course you're going to be affected by what happened to your DF, losing power of communication is huge - it shouldn't be like that for you though, just a bit of time whilst you recover from your op. It is truly shit having to tell your kids though and feel like you're shattering their world. Don't let your imagination run away with you either, try to focus on what's happening now otherwise you'll drive yourself mad!

@incognitodorrito my twin boys were 12 when I was diagnosed earlier this year. I was quite factual about what had been found and what the plan was, and that it’d be tough for several months but hopefully then gone or at least gone for a long time.

One of them didn’t even ask me a single question and has appeared totally unaffected throughout. The other asked quite a lot of questions about how cancer works, how chemo works etc and seems happy with that knowledge. They all react differently but I made sure to tell them that whatever they felt it was valid, and that were was support available any time they needed, anonymously if they wanted. Neither has taken me up on it but they know it’s there.

Sorry you’re here @incognitodorrito … my daughter is only 4 so very different stage but still told her the facts, as much as I think she could understand. And have several picture books about cancer; feelings etc. She was very quickly uninterested!

Older children: The Fruitfly Collective have some good info on their website & a load of different funky kits you can buy for children grouped by their age/stage of your cancer; and The Osbourne Trust also offer support for children whose parents have cancer.

I know how triggering the whole thing is. My own mother died of breast cancer when I was 10. I can’t believe history is repeating itself in such a horrific way. But I’ve drawn on that, & I’m doing lots of things with my child she didn’t do, & I know what I wanted, emotionally, as a 10 year old, but didn’t get, IYSWIM.

Sending you all good thoughts.

@incognitodorrito - I'm very sorry you're here, and I'm sending you all positive thoughts for your treatment. I have BC - diagnosed August, surgery in September and starting chemo this week. My children are older - 15 and 17, so obviously they are at a different stage in terms of their understanding (one of them had studied how chemo drugs work as part of science at school). But a couple of things which might be relevant - I've found it's not as big or overwhelming for them as I thought it would be at first. Obviously when I first told them, they were devastated, cried a lot and could think of nothing else. But they quite quickly started focusing on normal stuff - sleepovers, homework stress etc. I think it helped when treatment started that they could see I was still myself, and life hadn't completely turned upside down. I have stressed that they can talk to me about any worries, but they don't often volunteer any questions etc.

I assume your 12 year old has a phone? That's the other thing you need to be aware of - there's no point trying to protect them from the scary shit because they can google for themselves. So it's important to stress the usual stuff about not all online info being reliable, lots of data being out of date etc. I have shared as much factual information as possible, being realistic while stressing the positive - I'd rather they heard it from me. Having said that, of course, not all internet content is bad news - my older DD volunteered that she'd seen a woman with secondary BC who posts on tiktok (no idea who she is) and her content seems very positive and had definitely helped DD see things in a different light.

And finally (sorry for the long essay) the other thing that has really helped is if they can see other people they know in a similar position. My DH has a serious (unrelated) health condition and in both cases when we are diagnosed they coincidentally knew a peer with a relative with the same condition and that definitely helped them normalise/process it. Obviously, that's just a matter of luck - but as other PPs have said, there are charities who can help with those kind of stories if you don't happen to have any in your lives.

I'm very sorry about your own experience with your Dad, it must have been life-changing and very traumatic - so it will be hard not to assume history is repeating itself. But this won't be your DD's experience of your illness. Sending positive thoughts.

@incognitodorrito welcome to the thread nobody wants to join. You have had a lot to take in in a very short time so your brain is probably still on catch up. I am a BC patient and unusually I had a triple positive BC in 2020 and now a triple negative BC in 2022. I can report that the chemo and Herceptin treatment for the Triple positive tumour while tough is manageable and in my case gave me a complete pathological response which is the closest they will get to admitting you are cured. My DC are older so telling them was very different. They have been a great support to me. Now I am going through Chemo again and being ultra competitive and aiming for the double CPR! Once the initial shock wears off you will realise that this is bread and butter stuff for oncologists, early BC is very treatable and most patients do extremely well. Those of us still hanging round here who are members of the Low Odds Bin Club attract problems like fruit flies to bananas. You will be fine!

I had a fab weekend. Energy held up, best wig had an outing to a nice meal out, and I did half a 5k Your Way Move against Cancer Parkrun and helped organise a cycle event. Today is a rest day before the first Paclitaxel tomorrow.
Sending good wishes to all,
Top x

Has anyone had lower back pain on chemo? I’ve had it almost daily since starting my treatment. Heat bags help a lot as do painkillers but I just wondered if it was a chemo thing.

I’ve had clear PET scans last month so assuming it’s nothing worrying (I hope) as it’s been going on for a few months but I don’t know if it’s chemo or menopause related!

Hi Great I didn’t want to leave you hanging … I have lower back pain … but I have everything pain so I wouldn’t say it’s necessarily from the chemo, maybe menopause, maybe just me being old. Mine hurts when I stand up for long periods… chemo is weird, it can affect anything and everything. Hopefully someone more useful will come along soon and advise you!

@AGreatUsername I've had lower back pain since my surgery which I've put down to the front muscles not working as well as they should and my back having to accommodate for this. Same as @mowly77, mine is worse when I stand for long periods and also when I sit in one position for too long. I wonder with OC surgery that we are plunged into immediate menopause so no longer have the hormones to keep joints supple. You're a lot younger than me and I was almost menopausal when I had my surgery, but for you it would have been more of a drastic drop in hormones if that makes sense?

Thanks both. Yes, it does make sense. I was 36 at surgery so still in my prime hormone wise I suppose, dropping to almost zero is probably a huge shock. My back does seem a little better on some days, possibly when I’m more active. Sitting at my desk or on the sofa makes it worse. As long as it’s not cancer related I can deal with it, I hate how every little twinge makes me panic now when I was so ignorantly cavalier about it before!