Cancer support thread #82

[MrsPnut]

Welcome friends old and new, to the most supportive thread on Mumsnet. Everyone is welcome whatever stage you're at (fears, diagnosis, treatment). Introduce yourself and say Hi

Good luck to everyone having treatment this week. Hugs to all - especially if you're feeling rubbish (physically, mentally, or waiting for results - ugh

@thereisonlyoneofme

Sorry - I missed your post. No - not had any probs with my TAH. I suppose they're trying to avoid unnecessary surgery for you - and their lists in the current struggle to manage the covid backlog.

Is it causing you any physical probs? Is there some sort of belt/truss you could wear? Or is it basically an anxiety problem? How are you coping in general? Ordinary everyday life?

@SewingBees thank you, I know no one can make it better but just having somewhere to put it down helped last night. I'm trying to get through to gp as I'm a complete mess and although I slept better last night know my mood won't cope if it's a long wait for appointment as I'm anxiety prone anyway.

Quick update, I survived, 7.5 hours and 6 hours in recovery, on HDU for next 5 ish days.I'll be back when I can x

@MissSmiley So glad you're still with us and recovering - that's a long operation x

@stressedscot sorry to hear how worried you are. Welcome to the thread nobody wants to join! Let’s hope you aren’t here long. The rules are Don’t Google and keep busy. You can moan and complain here all you like but don’t run ahead of yourself imaging awful things and planning your funeral. You could ask the GP for some night sedation while you wait, they will understand.

@SewingBees my hair started growing towards the end of IV chemo and by six months on I was ready for a pixie cut. It’s now thick and curly and nicer than before cancer 14 months later. Bonus!

I am off to that there London on Thursday. First trip in four years! I feel a bit exposed leaving my warm burrow for the big city but it should be fun.

Best wishes to all
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@MissSmiley ❤️❤️❤️❤️❤️❤️❤️❤️

@MissSmiley woo-hooo! Wishing you a steady recovery.

@TopOfTheCliff Not even earplugs helped, I had it in stereo (two angle grinders at the same time). At least today they are at the far end, so can’t quite hack my brain in the same way as yesterday. Enjoy London! .

@stressedscot waiting is mentally so, so awful as your mind just keeps on pulling you in all sorts of (bad) directions. I hope you won’t have to stay here for too long, but in the meantime vent, cry, moan, scream, we are here to listen.

@SewingBees I have had so much ice cream over the last few days!! I have noticed my hair was growing again just about a month after my last chemo session. I mean, barely noticeable fuzz on top of my bald head, but fluff nonetheless. I went to the hairdresser in May (last chemo in November 2020, fuzz spotted in December 2020, hairdresser in May 2021). I have a pixie haircut anyway, so I never let it grow too much before cutting it. Texture wise it is coarser and thinner than before. (not envy) But still… it’s hair, I have finished chemo and I am alive.

DH finally tested negative 2 days in a row, so has taken delirious (from being cooped up indoors since 4 Feb.) DS out. And I have decided to plough through Belinda Carlisle’s discography.

Well done MissSmiley so glad you made it through and all the best getting through the next 5 days. Thanks for letting us know.

stressedscot Hope you can get a quick referral, does sound like needs checking out though hope its something benign. I would let your DH know, he would want to support you through this and it is a bit easier when someone supportive knows. Try to get a quick referral then after that the best thing is distraction, if it is cancer you have done everything you should and your team will do everything they can and there are lots of treatments available.

I am off to sunny Scotland tomorrow. Long car drive up and think its raining, sleet, hail, strong winds and snow whilst we are there but just a change will be good and should get to swim. Hoping don't get covid during it but at least its not too bad a time to get covid as they have now said they believe all cancer is out. Looked up survival rates for my details last night and its 88% for 5 years, 71% for 10 years so a lot better than looked initially but still a bit scary, just have to keep exercising and not think about it too much and doing ok with that. Appointment now made for 28th.

@MissSmiley well done, I hope the five days passes quickly and painlessly and that's the last you hear of the GIST. xxxxx

@Silkierabbit It’s going to be blustery. Storm Dudleyor done such thing, so take care, bring all the waterproofs you can get (and thermals). Hope you enjoy Scotland!

Thank you all for the support, I've let best friend know a bit but haven't given her full story as she's having a hard time herself. I will tell dh but just hasn't been right point, we spend a lot of time in opposite directions doing taxi to teenagers hobbies. I'm currently sat in the car debating a nap waiting for ds as I'm shattered despite not getting up till 11. It's definitely the waiting that's worst. I couldn't get to speak to a gp as only one available was a locum and I'd rather fall apart on one I know. The very grumpy receptionist was actually rather lovely as I cried down phone and told me to call back anytime if I'm struggling. I pulled myself together a bit then dragged myself to boots and bought rescue remedy instead for now. I will step away from google I promise. Those of you getting away for a break I hope you have a great time, what I'd give for a holiday in the sun right now!

Thymeout Hello, yes I am a bit anxious about it, stupidly googled and saw pics of some huge hernias! Its 10 months since my op and thought I had swerved the hernia scenario. Apparently it was showing on a CT scan in October but no one mentioned it, and the January scan showed it had grown and I noticed it.
Im feeling physically well, but still very mentally low

Thanks Balkan and stressed. We are just doing a plan B for if we can't get as far as Scotland tomorrow given the fine weather forecast. Plenty of warm clothes though think we may just be dashing between hotel and car given forecast. But nice to have change of scenery and might even see pandas in the snow with the forecast.

Glad you told a friend stressed, and there are lots of lovely supportive people going through similar if it is cancer.

Pleased to see your update @MissSmiley 😊

I have been lurking here a while and just wanted to say thank you to everyone who posts about their experiences. It’s helpful and consoling and actually lovely to see all the kindness.
(BC diagnosed December 2021, lumpectomy, now at start of chemo, doing ok….)

@thereisonlyoneofme

Oh - so sorry to hear that you're still feeling low. Have you talked to your GP about it? I've been on a low-dose antidepressant (paroxetine) ever since the beginning of my ovarian problem which led to my TAH. NOT cancer, but 'diagnosed' as such by Dr Dud at my general hospital - no oncological qualifications. Fortunately St Thomas' took a different view.

I can give it up quite easil

Oops - easily. But after 6 months or so, I start waking up with a panic attack even when my mood is perfectly OK. So GP has decided it's a physical deficit.

You've had a lot to deal with and the social isolation of Covid has been difficult for us who have retired and live on our own. Not enough distractions to blot out the always present fear of recurrence or just getting older and not being able to do as much.

Anyway...my happy pills help me stay on an even keel. And no shame in needing them.

Hope you find something that works for you. Just getting out and about makes me feel better.

@LimboAgain it’s nice to glimpse you delurking! Good luck with your chemotherapy and do come back and tell us how it’s going xx

@LimboAgain Well done for coming this far!

@thereisonlyoneofme @Thymeout I have been prescribed beta blockers which I am sort of reluctant to take, even though they do help when I eventually decide to take them. They take the edge of my racing heart beat and are not addictive. The fear of recurrence is ever present, or in my case, re-recurrence. I keep thinking that next time it’ll be beyond curative, that’s my greatest & ever present fear which makes me have awful dreams at times, waking up drenched in sweat. I have also revisited Ashtanga yoga - used to practice it about 20 years ago. I am going to sign up for a class as well (currently waking up my dormant knowledge via David Swenson’s YouTube videos).

@Silkierabbit Did you make it to 🏴󠁧󠁢󠁳󠁣󠁴󠁿? It is pretty stormy out there. ☔️

Well, 4th session of first chemo over. Had cold cap each time, but my hair has not stood up well to the trauma.🙁 May not carry it on into next phase. Side effects been getting worse each time, so not really looking forward to next few days, but brighter skies ahead, and not just because storms will have moved on. It is wild out there tonight, feels fitting.

@balkanscot
Thanks. I know beta-blockers help some people. Good for driving tests and flying, but I'd be taking them every morning. It's weird. I just wake up with that horrible feeling you have if you think you might have just run over a cat. Not a good way to start my day. It's only a tiny dose of paroxetine - 'not even curative' according to a locum, but it works for me.

I'm going to try yoga to sort out a sore back. Can't take naproxen because of only having half a colon. My abdominal muscles are shot after 2 surgeries and my poor back has to do extra work to keep me upright. Moan, moan.

Has anyone said anything to you about the new drug which NHS Scotland has cleared for use? Really good results on secondaries.

Thanks Balkan. Yes made it to Scotland, 7 hours or so up and dh crashed slightly into a fallen Scottish tree, car fine, biscuits broken, glad to be here. Rather stormy weather.

Morning everyone…just wondering if anyone has anything they could share about Zarzio/Filgrastim injections, please? I started my new EC chemo regime last Thursday (following 12 weeks of weekly carbotaxcel) and had to use the injections for 7 days, starting last Saturday. I’ve been so, so poorly, very nauseous, dizzy, absolutely exhausted, with terrible back pain ever since. I normally feel rough for 3 or 4 days following the carbotaxcel, but EC has been something else 😞 I spoke to the hospital yesterday and they said the injections would be the cause of the back pain, which has been so bad I can only stand for about 4 or 5 minutes without being in great pain. They advised taking solpadeine, but I can’t really tell yet if it’s helping as I only got some yesterday evening.

I was just wondering if anyone else had this experience with EC and/or the injections…or any good news about how it won’t last 😞🤞🏼I’m due another EC dose two weeks today ( I have to have 4 in total) and I’m absolutely dreading it already. I know chemotherapy is never going to be fun but it’s been absolutely dreadful this time, and I’m feeling very low and sorry for myself.

Sending love to everyone as usual x

@MissSmiley Great news, hopefully you’ll be home before you know it and can start to recover properly.

@LimboAgain Nice to see you, please do jump in and let us support you too.

@TwoBigNoisyBoys I had pegfilgrastim injections which are just one dose 24 hours after chemo and that didn’t give me any side effects. It might be worth asking to switch (but it is more expensive). Other people have tried taking an anti histamine about 30m before the injection and doing it at night before bed.

@MissSmiley I had exactly the same! The lower back pain was excruciating! I remember the pain came on suddenly while I was driving the car with DS sitting next to me and I remember thinking what do I do, I was visibly wincing and trying desperately not to alarm DS. Then I woke up in the middle of the night, was almost howling with pain it was that bad. It was worse when I tried to sit/lie down, and just marginally better when trying to move. I was o.man the phone to the chemo helpline and they told me the cause would be Zarzio injections. Nobody warned me about this on the chemo ward, and as you can imagine, I thought the worst had happened- bobe mets! I kept taking paracetamol with Bruges and it got better. But boy, I have never experienced such pain in my life!

@Thymeout I think I have read about that drug which is encouraging. Thankfully my recurrence hadn’t spread, so still considered primary and not secondary. But yeah, psychologically it’s shit, and I was never prepared for the mental struggle. When I was initially diagnosed it seems I just breezed through - no chemo or radiotherapy though, just lumpectomy & double mastectomy with reconstruction & oophphrectomy (BRCA2 positive). Recurrence is a whole new different ballgame, it has shaken me to the absolute core and mentally it has been really difficult to move on - my brain seems to be on the constant lookout for any niggle. Which is terribly exhausting.

@Silkierabbit glad you have all made it to Scotland despite the weather.