Cancer support thread 91 - don’t borrow tomorrow’s worries

[LemonDrizzle10]

New thread

I don't think they're saying "mentally ill"
I think they're just giving you an avenue of support

I had it yesterday, tho a bit less bluntly, at my "holistic needs assessment"
I'm not anxious and I don't need a Counsellor, but when I mentioned (in chat rather than anything else) that I was surprised that my eldest was managing it less well than my youngest, the offer was made

I think the NHS is not set up well to manage mental distress as a result of physical illness @Unex - I was referred for support after I was diagnosed with a cardiovascular condition that may never affect me or could kill me today, the way which it was diagnosed was appalling, so the GP referred me to the IAPT services, but it turned out that I didn't meet their criteria because I was anxious / distressed about a specific thing rather than having generalised anxiety, and even if I had met the criteria, there would be a year waiting list. Like lots of other people on here I use an app, I use Insight Timer at the moment, but I had free years on Aura and Balance (not the menopause one!) It is a long time for you to wait though .

@Unex that would piss me right off too.
Giving them the benefit of the doubt, I suppose it's better than offering absolutely no support at all?

@lucysmam that's ridiculous 🤣😭 hope you are feeling okay and not too itchy. Hopefully your DDs haven't seen this episode of friends...

@TopOfTheCliff terrific hair description, that made me chuckle 😁

@SierraSapphire next up for me is starting hormone therapy and then a mastectomy + reconstruction. Original cancer got lumpectomied back in June but it brought friends (thankfully only counting as one primary) and had a higher than desired risk of recurrence when they ran tests. So chemo was to negate the RoR and then mastectomy is to get all these little leftovers cleared out. I don't have a date for that yet though.

Not sure how I feel about starting hormone therapy so soon. I was thinking it would be good to feel a bit normal again over December but instead I'm going to be plunged straight into more side effects. Hello menopause. 😕

@EachandEveryone , just seen your update. If it is bc, that would be very unlucky indeed but 7mm is still small so likely highly treatable. But there are other things it could be, and the scan measurements are not accurate so it may not actually have doubled in size? What a lot of crap you’re having to deal with though.

Sending strength to you and our new joiners and everyone anxiously waiting.

I’m still waiting for two appointments to look at my possible lymphoedema, one NHS and one private. The swelling has flared up after a friend I met for lunch bought me flowers and I carried them around for a couple of hours. Feels like nothing is simple any more…

@EachandEveryone it was full of ascitic fluid - I looked 9 months pg! I had it drained 3 times all in & then the chemo seems to have stopped it coming back. It was horrible - everything was so squashed I was struggling to eat, had the worst indigestion imaginable, felt rough as fuck. Just all round not good!

@AllotmentTime dd1 might have done 🤔 I'll have to ask her! Although then she would threaten the oven gloves, so maybe not 🤣

@dotty2 totally with you on "nothing is simple any more"! Very frustrating.

We're off for a stomp in the fresh air today - dd2's struggling a bit & I think it'll do me good too. Hopefully she'll chat about whatever's bothering her.

Have a good day everyone 🙂

@lucysmam oof chicken pox. Apparently I had it at 6 weeks old - so much for passed on immunity! Hope it's a mild outbreak for you and doesn't cause too much discomfort.

@EachAndEveryone keeping fingers crossed it's nothing but understand the worry.

I never completed my holistic needs assessment. We did when DH had cancer, but it seemed to be more of a box ticking exercise (quite literally) than anything that generated much practical use so I didn't bother. I think they do a good job of identifying that cancer patients may need additional support, but don't know how to offer or implement that support.

I feel in some ways going through treatment was the easier bit mentally - both waiting for diagnosis and treatment plan and then post-treatment caused much more mental anguish for me. I don't know how much it varies over different centres but I felt somewhat abandoned after treatment has finished and I was left physically and mentally exhausted with my resilience at an all time low.

@EachandEveryone if it’s another cancer you can join my exclusive club of pissed off double bonus winners. How can it be when you were on chemotherapy for months? Fingers crossed it’s just something benign and unusual. The rage room is free as @lucysmam didnt need it after all.

@ClashCityRocker you are spot on with the abandonment feeling. My team keep reiterating that I will feel worse and need psychological support so I have been on several post cancer recovery Courses and am actually happier and more sorted than I have been since the second cancer was diagnosed. I think I have let go of the rage and forgiven myself for getting cancer again if that makes sense. Look out for things like the BCN Moving Forward course or CancerLifelines. I’ve found a physio running a gentle recovery course for BC too. Lots of yoga and meditating which my newly hippy self is liking.

Off to take MIL to town. 90 year olds know how to party!

@AllotmentTime I initially refused hormone therapy as I couldn’t take any more and wasn’t expected to be given a prescription at my first oncology appointment. After a month though, my mental state has improved, had psychotherapy for PTSD symptoms from a badly handled diagnosis and now feel much more able to deal with whatever it throws at me. Not advising delaying but I wasn’t even going to start! I’m two days in and apart from feeling a bit dizzy and nauseous for a couple of hours it’s been OK. Wishing you all the best and hope it’s OK for you.

@TwigTheWonderKid

Yes, a PICC line means you can't wear a BP cuff over it, and you should avoid your lymph node removal side too, but don't worry: they can take your BP on other parts of your body, not only upper arms. They did it on my legs once or actually more than once I think.

Thanks @SummerCycling

I had it fitted yesterday. It was almost fun. Rose and her colleague were so kind, professional but also jolly. And they were playing Christmas jazz (which while slightly cheesy, I do have a soft spot for). We swapped cat adoption stories and before I knew it, it was done.

Apparently they can put the blood pressure cuff on my lower arm. Don't know why I felt the need to find that out, it's not as if I'm the only person in the world with a PICC line in their only "good" arm. I guess I just feel like more and more bits of me are becoming abnormal!

Okay, I feel a bit discombobulated, I have just found an email in my mum's inbox (whilst managing her admin) from someone who is a relative on her side of the family, although I can't quite work out who, that indicates that there is a whole lot of ovarian cancer, including a common ancestor who would be my great great grandmother who died of ovarian cancer at 48. I had a genetic test and as far as I know, it came back negative, but there seem to be so many people in the family who had ovarian cancer - my aunt died of it, although at an old age and my cousin died of breast cancer, 32, that there must be some sort of genetics in there. the sister of my cousin who died had a genetic test that just hasn't been found I would've thought. Has anyone else been in the situation of lots of cancer in the family but no genetic link found? My mum didn't mention the email to me, though it was received in October, and isn't keen to talk about it now. I'm going to email the relative, she's just been genetically tested, I'll tell her about my test. I feel a bit freaked out, but my mum keeps trying to change the subject to how she's going to get to a hospital appointment!

Hi @SierraSapphire my maternal grandfather died of lung cancer, as did mum, but both were smokers. Maternal grandmother died of bowel cancer. On my dad's side his younger sister died of breast cancer in her 30s and his older sister had ovarian cancer, which was treated.

So quite a lot of cancer going on my family but according to both my breast cancer oncologist and my colorectal one, none of it is likely to be genetic.

@SierraSapphire my family has a lot of bowel cancer. My brother was diagnosed about 25 years ago and although they felt there was likely a genetic cause, the test came up negative because we didn’t have the most common genetic mutation, which accounted for about 80% of genetic bowel cancers. It was only a year ago that our mutation was finally identified and genetic testing became possible. I was looking into testing but then I was diagnosed with bowel cancer so that answered the question!

Yeah that's what I wondered about @Remaker - particularly as it's all the same type of cancer, whereas I can see with @TwigTheWonderKidthe different types of cancer are less likely to be linked. My grandmother had a hysterectomy but no one knows why, my mum thinks not cancer but she's not sure, and my mum has never developed cancer (though whenever I talk about mine she regularly says "well I might have cancer" - which she may very well, she is 90 but it's not really quite the same!) I've emailed the relatives who were talking about it, so I'll see what they say.

I also (whilst I'm here) had a bit of a strop on a friend this morning who I know was trying to be nice but people keep going on about my hair over and over again - they are saying it looks nice which I know is meant to be a compliment, but every bloody time it just reminds me of cancer and chemo. AAARGH. STOP TALKING ABOUT MY HAIR! It's over a year now, I'm done!

And chill.... Hope everyone's having a lovely Saturday evening! 😁

@SierraSapphire my mum was the missing link in the cancer chain too, and very reluctant to talk about it. In fact despite being close to her cousins she had never passed on the information that there was a strong possibility of a genetic mutation in the family after my brother was diagnosed. My great grandmother, grandfather and then my brother all had bowel cancer (plus various other relatives) but Mum hadn’t. Then last year at 87 she was diagnosed with endometrial cancer which is also linked to the genetic syndrome that my family has. I’ll be having a hysterectomy next year for this reason.

@SierraSapphire
My mum died of BC, my Aunt (her sister) of uterine cancer. Their brother died of leukaemia tho no link

Both my sisters had cervical, one of two female cousins ovarian, the other no cancer

Then I got BC and no genetic link

Now I have lung cancer, there's a genetic mutation at play, but it's unlinked

Sorry to those of you with a lot of cancer in your families (and two cancers, I had two but at least they were in the same area, endometrial and ovarian and got removed at the same time and same chemo). I was really complacent before as no cancer in my parents or grandparents, though I was scared of getting something neurological. I'm not sure if the genetic link makes any difference to anything very much, my ovaries have gone, and it was removed very early because of the endometrial cancer symptoms (I'm possibly the only person in the world who's lucky to have got endometrial cancer!), but it's just another thing to get my head around when I'd rather just forget about it all.

Hi all

It's a week and a half since only 5 days of radiotherapy, left breast.

Some tiredness has been coming and going.

But more noticeable is a great deal of stiffness across my shoulders and a general feeling of inflammation in my whole body.

I'm aching all over in the middle of the night. Insomnia for a couple of hours last night. Slightly loose bowels today, I've not had an issue like that for months.

I do feel a bit woozy and odd today.

Could this be radiotherapy? Because I have felt a bit like this when in the worse throes of peri menopause just before a period. Haven't had one since I started tamoxifen and just wondering if it could be that.

Mainly asking so I can work out how much exercise to do and what.

hi All. Turns out I have got covid. Don’t feel to bad, flu symptoms and a cough. Not as bad as the last few years of catching it. On my capox treatment, had the drip on Friday and been told to stop my tablets for the week. Getting anti viral medication. Was worried this would bring my cancer back as tumour was removed and cells left. But was told it won’t delay my treatment. I’m a worrier totally. I have one more treatment to go. 3/4. Thanks all.

Bad luck @Slitheringheights . I had Covid last Christmas Day just after finishing IV chemo and the Paxlovid tablets saw it off immediately. It won’t affect the success of your treatment if you have a week off, it hangs around in your system for longer. Are you getting any help with the worrying? It might help you.

@Ikeameatballlunch you need to take the advice I am always getting and take it easy for a few days! The exercise can wait. Radiotherapy is a bit like being microwaved. There is a lot more damage inside than you can see on the surface. Drink lots and take it easy.

Sending strength to you all
Top

TopOfTheCliff · Today 14:32
thank you. I was just worried it would slow down my treatment and my cancer cells would increase with stopping my chemo tablets. if that makes sense. I know it’s only a week. Just been given the paxlovid anti viral tablets, so started them. My cough has got a bit worse. But feeling ok. I think it’s the inconvenience of it all that’s annoying me. Thanks for your response.

MRI booked...7:50am, 1st Jan, 2 hours bus travel away except buses are not running on NYD.🙄 So either the cardio dr did in fact not note that I don't want stupidly early or late appointments with being on the bus, or my request was ignored.

I've rung to re-book and been told the best they can do is 2:20pm another day - so yet again I get stuck on the bus at peak time & not in for my kids coming home from school and coll3ge. Marvellous. & have to take yet another day off work.

Wonder why, or whether it was just so I'd take the one on the 12th & put myself out, rather than waiting longer.

Not sure why the NHS seems to think no-one works & everyone is waiting around for them to say "yes, I'll take whatever appointment most disrupts my day & be happy with it". Massive sweeping statement there, sorry, it's really starting to grate on my nerves.

& to top it off...today's post was...an unsolicited "cancer patient survey". At what point I agreed to having random paper wasting posted to me, I do not know. Grrrr!

It's all so bloody inconvenient, annoying, & poorly thought out 🙄

Hope you're all doing alright!

@Slitheringheights hopefully you're better soon 💐

I got that cancer survey too @lucysmam . I had a very therautic rant about the unbearable torture of waiting for scan and X-ray and biopsy results. I dont suppose it will make any difference but I feel better for saying it. Sorry about your appointment tedium.

Maybe I should fill it in with a list of my moans 🤔🤣 I think I'd need extra sheets atm mind!

I've just realised; if I go to the 2:20 appointment, I'm potentially not getting in til 7pm depending on their time keeping after a wait for the scan...then hour for the scan, then time to dress & wait for a bus back to the city centre, then bus home for 2 hours. So 4 hours + travelling, then however long waiting about potentially.

Erm, no. I'll be ringing the local cardio dept & telling them to request it at the local hospital & either take it & the info they can get from it, or leave it. That's just rediculous for a 1 hour ish appointment & an entire day out of my life for it 🙄