Cancer Support Thread 83 - Here comes the sun (hopefully)

[Silkierabbit]

Welcome to a supportive thread for anyone with cancer to discuss how things are going, ask for advice etc or discuss life in general.

Please feel free to join 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.

Named the thread in honour of the lovely LeslieKnope who did thread 62 in the same title who is sadly no longer with us but inspired me with how she was so lovely and kind with stage 4 cancer in her 20s and also the lovely PurpleUnicorns. Thinking of you both. Hopefully there will be some sun inbetween the difficult days.

May be useful to do introductions at start of thread. I am 49, lobular breast cancer, diagnosed Nov 21, after sent for tests then after being dismissed as nothing by GP in June. 46mm and 17mm tumours with 1 lymph node involved. Had 2 surgeries, currently doing chemotherapy, radio next then hormone tablets. 1 husband and 2 kids 16 doing gcses and 15 with SN and mute. 1 Maine Coone kitten, 3 silkie chickens and 1 indoor rabbit.

[AGreatUsername]

Thanks for starting a new thread Silkie.

Welcome to anyone just reading this thread as a newly diagnosed (or awaiting diagnosis) person.

I’m 36, very recently diagnosed with ovarian cancer. Debulking surgery is planned for next week and a 6 month course of chemo following that. I am married with 5 children and 2 cats, although I am planning to copy Silkie and also get a Maine Coon kitten once I’m over surgery 🙂

[MrsWooster]

Thanks for the thread, Silkie
I have primary peritoneal cancer (much the same as Ovarian Cancer).
Diagnosed in Dec 2021, I’ve had 3 x chemo, debulking surgery, and 3 more chemo. It was all going very well but CA125 results are going in the wrong direction since surgery and I’m waiting for results of a CT Scan to check for metastases.
I have two kids (KS2 and KS3), two cats, two fish and two hens. I do not live in an ark, though it does sound like it.

[MrsPnut]

I was diagnosed with vaginal cancer in Nov 20 and then following a CT scan diagnosed with breast cancer 10 days later.
I had 25 sessions of chemo rads in dec/Jan 21 and then 3 sessions of brachytherapy.
I then had a double mammoplasty and full ANC in April 2021, chemo started in May 2021 and I had an extravasation of FEC from my port in July 2021. I finished my docetaxol by the end of October, had a reexcision in December 2021 to get a clear margin. I had my radiotherapy delayed because the damage to my chest opened up and it took time to decide how to manage this.
I’ve now finished radiotherapy, still have a wound in my chest and have developed late effects from my pelvic radiotherapy.

Cancer can fuck the fuck off really.

[Fantasea]

@Silkierabbit thank you for the new thread

@AGreatUsername I'm so sorry to hear you're having a tough time, with your surgery looming it all seems very real and overwhelming doesn't it? I was diagnosed in December 2020 with OC stage 3c. Like Running, the thought of recurrence is never far from my mind but I've never had the courage to ask what my prognosis is. I can totally relate to how difficult it is to reassure your DH when you feel so awful yourself, I did a lot of that and still do to a certain extent. Macmillan are good for both the patient and their family and you can say anything to them, as you can to us on here. There really isn't a silly question, we've all thought the same things along the way and it's all terrifying Xxx

By way of introduction, my troubles started with 2 DVTs in my leg in February 2020 and many investigations for auto-immune conditions and blood cancers. A growth on my ovary was picked up in September 2020 as an incidental finding whilst having a CT to check my spleen and liver for the suspected blood cancers. I was finally diagnosed in December 2020 with stage 3c OC. I've had 6 cycles of paclitaxel and carboplatin from January to June last year with debulking surgery after the fourth. I've been on oral chemo Niraparib for 8 months now. I am in my mid 50s with an adult DD.

[twointhemorning]

I usually lurk on these threads, but I see there's a few people with ovarian cancer.

I am mid 40s and was diagnosed with stage 3 ovarian cancer in May last year. Had debulking surgery in June and along with a hysterectomy had many internal organs removed. Had 6 cycles of chemo (Paclitaxel and carboplatin). Then started maintenance therapy with Olaparib a PARP inhibitor.

CT scans show things are stable and my CA125 is low.

I've been struggling with side effects from the Olaparib and have had 2 blood transfusions. Hoping that my body can cope with the current dosage and I can return to work in a few weeks. Currently having weekly blood tests to monitor my haemoglobin. I have been off work for just over a year.

[Silkierabbit]

Welcome all and thanks for the intros.

Sorry cancer hit you so young AGreatUsername and with 5 kids. Definitely recommend the Maine Coon and any excuse for a pic of mine sleeping with me last night.

Really hope its not gone to mets MrsWooster Sounds like our mini zoo there.

Yes MrsPNut Here comes the sun is not the song that comes to mind for me more like Road to Hell but hopefully the sun will come now treatment is over, or nearly over, for you. Good luck with GCSEs, 13 days to go here, not that I am counting.

Sorry so much treatment Fantasea

Welcome Twointhemorning Glad you joined us though sorry its through cancer and hope you can get well enough to return to work and do more nice things.

[Silkierabbit]

I did have some good news today after an awful 9th chemo on Monday which have a complaint in for, chemo staff were fine but receptionist started having a go at me pre chemo for not wearing a mask very loudly in front of everyone saying even though exempt (also tested neg) its nhs policy that I have to wear one even with panic attacks and I am being selfish not to. Then went to chemo very stressed and a nurse who is lovely was saying how another patient who was always cheerful at chemo was all the nurses favourite patient. I always wonder what people are on, the one person who claims to enjoy chemo each time, one last week was saying its as you get free sandwiches. They dont even taste nice nhs sandwiches and you get offered 1 about every 6 sessions. Personally I would pay 3 pounds at a service station and skip the cancer and chemo.

Anyway we have been given a cottage in Cornwall for a week by a cancer charity and they have said today can also take Dds friend so she is very excited.

[Silkierabbit]

Apparently my complaint is with the Head of Oncology, I must say I am getting amazing at complaining, steroids help with dramatic statements.

Hope you are enjoying your adventure Top and love to everyone else, hope you will join us soon.

[TwoBigNoisyBoys]

Hi everyone, thanks @Silkierabbit for creating and linking to the new thread.

I’m 48, single mum of two boys. Diagnosed with breast cancer stage 1 grade 3 last October. Have since had 26 weeks of chemo, and I’m having surgery next Monday. Was supposed to be 3 weeks ago, but I caught covid so it was postponed. Trying not to panic now about how much it has grown back since my last chemo. Surgery will be followed by radiotherapy and possibly oral chemo, depending on pathology results.

Sorry to everyone that finds themselves here, on the thread nobody wants to join! On the plus side, you won’t find a friendlier, more supportive thread on Mumsnet!

Sending love to you all, as usual xx

[Silkierabbit]

Lovely to see you here TooNoisy and hope the surgery goes as well as it can on Monday and results are OK after it.

[twointhemorning]

@Silkierabbit thank you.
The receptionist sounds very jobsworth, well done on complaining.

It's horrible that the nurses are showing favouritism. I did find
some nurses were nicer than others and explained things better, or gave infusions slower to avoid the prickly bum feeling!

I've awake with insomnia. I've not been able to sleep properly since my cancer operation. I can't blame it on the steroids anymore. Maybe it's due to the (surgical) menopause. I finally gave in and went to see my GP last month who prescribed zopiclone. It works for about 2 nights in a row and on the third night I'm wide awake. I can't sleep in the day either.

[mowly77]

Fuxache @silkie free sandwiches!!! Yeah we get free sandwiches too: tuna - tastes like mashed up roadkill on soggy cardboard; plain ham - can’t critique as I don’t eat meat; or plain cheese which I quite like with the salted ridged crisps you get with them mashed inside (lunch bag; also contains a piece of shrivelled fruit & the option of lentil soup). Bloody luxury can’t wait to go to chemo every week!

Srsly though thank you for new thread @Silkierabbit and fuck cancer; fuck chemo; and fuck NHS food.

I’m 47, metastatic breast cancer in my lungs; pleura and sternum and pretty sure in some places they haven’t bothered to check yet. Diagnosed in March after it was missed by breast clinic in November. I’ve got 3 PALS complaints going! I wish I didn’t but the NHS is broken.

Recurrence from 11 years ago & then found out was BRCA2+. Not a huge surprise; my mum died of breast cancer age 35 when I was 10. I was having yearly mammograms but just got laissiez faire about checking myself. Psychological thing after reaching my mum’s age I think. But no lymph node involvement and had risk reducing surgery to remove ovaries and tubes in 2019. Huge waste of time and awful awful surgical menopause! I did so enjoy my 11 years of cancer-free life though.

I have one daughter who will be 4 soon and 2 cats one of whom snores quite loudly.

I'm on chemo - Paclitaxel - no. 6 this Friday if my bloods are ok. I endured a horrific 80 hour A&E stay in April; eventually diagnosed with an extremely rare blood disease too. Cancer is the gift that keeps on giving.

@Running obviously the other shoe has dropped and this is my incurable reoccurrence. But I totally understand you. It’s utterly unknowable. I’m much too scared to ask for my prognosis. My daughter is so, so young. I’m constantly doing sums in my head: if I live x more years she’ll be x … etc. Basically I will keep living until treatment stops working. I’ve been to the Marsden for a second opinion and they were great. I’m supposed to do 12 -16 Pax and then they’ll rescan me. If it’s kept the cancer in check I can go onto maintenance with immunotherapy. After that stops working there’s a new targeted drug specifically for BRCA+ people that’s performed better than chemo in trials. It’s on the NHS in Scotland but not England yet but hopefully will be by the time I get there, if I get there. Basically there are new and better targeted drugs coming out all the time and big hospitals like the Marsden have lots of trials.

I don’t go on other message boards or forums much as I’ve come across terrifying & inconvenient facts about metastatic prognosis. But I’ve also read about women living 10 or 15 years. So I choose to stop reading there. There is hope, I hope.

I’m back on antidepressants and feeling mentally mainly ok. But I get horrifying panic attacks from time to
time about dying & leaving my daughter. It’s a rollercoaster. Physically quite nauseous and feel mildly unwell all the time from the chemo (& I’m still on a 25% reduced dose! Dreading them putting it up which is the plan … but I also want it to work) … but well enough to function ok: work a bit from home; play with DD & look after her; & go & see Top Gun tonight wey hey. And drink wine. I know that’s not great but fuck it.

Sorry for my entire cancer life story. If you’ve read this far you get a prize.

[mowly77]

@twointhemorning fellow insomniac here! Yes surgical menopause will do that plus the fucking cancer. I get Zolpidem which puts you to sleep quicker but you don’t sleep as long. You could try. About to switch back to Zopiclone for a change though.

& aghh the bum and crotch on fire feeling!!! I ask them to put it in my IV now. Eliminates it. But is slower. Hey guess what though? Apparently men don’t get that. Good for them.

[VaginaRegina]

@mowly77 - so sorry for all the shit you've been through, but glad the Marsden were helpful - I've been treated by them from the beginnning (ovarian clear cell) and they are absolutely awesome IME.

Feeling dispirited at the moment as although mine was supposedly caught early, I have just felt so ill ever since my surgery (March 2021), and so lacking in any energy - you expect it during chemo but 9 months on I really wish I could summon up a bit of energy.

[Silkierabbit]

Fellow insomniac here Twointhemorning

Welcome back Mowly I read it all, looking forward to receiving my prize of an NHS sandwich. The lady who said it did not even have one, had she tasted the stale bread (with worryingly 3 more days in date on it) and the very average fillings she may change her mind. I once did have 2 sandwiches to try and start to reclaim the £30 car parking fine we got first chemo but then I decided I was just punishing myself more. I normally have coronation chicken as the sauce dampens the stale bread and disguises the super economy chicken. Hope you will be one who gets to live a long time with stage 4, my hospital told me they have some women who have lived 10 years with that though added a positive attitude helps and I thought that's me stuffed then. 😂Though I think the positive attitude thing is a load of rubbish. Leslie on here was one of the most positive cancer people you could come across and died at 28.

Welcome Regina I hope you can get some energy back, I am on chemo and a sloth has more energy though I did manage an hour on Staple Island at the weekend to see puffins but that's my exercise done for the month. I had a target of 20 mins a day but hmm not happening atm.

[mowly77]

Coronation chicken? Coronation fucking chicken? You are living like royalty in your hospital. I’d make an exception to my
no meat rule and eat the shit out of that. In fact I think I’d burst with surprise and shock should the sandwiches ever be anything but tuna; ham; or cheese.

we do get regular hot drinks and sort of nice packets of processed cakes. The Genoa one is … edible.

[Silkierabbit]

They also have tuna, ham and cheese as well as coronation chicken (definitely not been near any royalty ) but there is a secret stash of other ones including turkey and chicken and lots of different biscuits, yoghurts and tea, coffee and water but if you want it you have to seek it yourself. The meek get nothing. You have to be determined to get your sandwich and go in with an action plan.

If you want to eat like royalty then when I got sent private on the NHS there was fab food there, plus you didn't get kicked out half comatosed with no pain relief, you got a room, a bathroom, own nurses, own doctor and great food. All yours for only £10,000 if you self pay. The breakfast smoothie was good but not £10,000 worth. I did not especially want to leave there.

[Silkierabbit]

In random silly cat news Mr Floof can now get over the baby gate to the rabbit, he does not jump, he claws his way up the doorframe to get in and leaps down, today he was playing leap frog over the rabbit. The rabbit was always trying to make friends with our girl cat who died but she would have nothing to do with him, now he is half enjoying it, half what is this animal and please remove it. So we need to take him out and supervise.

One of the baby silkies cannot get down the ladder from her chicken cottage and so DH brings her down. The other one flies out.

[Billandben444]

Thank you for new thread @Silkierabbit my son has 2 Maine Coons - one walks round like a king and hisses at you if he's feeling grumpier than usual and the other runs everywhere - up and down stairs and through the house like a whirlwind. Definitely characters!
I'm newish to the thread, recently diagnosed with breast cancer (44mm and 29mm in same breast) with mastectomy and lymph node removal this Saturday which is why I'm up at silly o'clock! Not having reconstruction. I'm 70 next month with 2 children and 2 teenage grandchildren and a lovely partner of 22 years (my second time around). Both my father and sister succumbed to cancer and I'm struggling a bit to stay positive in the early hours. Got my pre-op assessment today and my nuclear injection on Friday ('it's only a bee sting!') and then day surgery Saturday. I'm humbled reading all your stories, how do you manage to keep calm and cheerful with young children - gosh, sending you all a huge hug!

[Silkierabbit]

2 Maine Coons is lovely BillandBen Our kitten already has a king walk and look he puffs up all his fur and tail puts his head back and legs wide and looks very magestic. He also sits on my pink recliner with a similar puffed up look and looks like a little king on his throne. He is super purry.

Hope your op goes as well as it can, mine was a lot better than I expected and its great to know cancer is out after it. But none of this is easy and I also find it hard to be positive, I moan and panic my way through and just try to carry on day by day though I frequently say I am never going to another chemo. But you do as the alternative could be so much worse. Sending love.

[Zorgothslugofdoom]

I haven't posted for ages, but read this thread every day and think about how everyone is doing. I was diagnosed with breast cancer in October 2019; had 6 rounds of chemo, surgery, radiotherapy then herceptin for a year which ended on 8th Jan 2021 and am now cancer free. I was left really lopsided (c cup on cancer side, G cup on other). Waiting list for symmetarisation was over 2 years, so I paid for surgery in june 2021 to even me up. Felt very fortunate to be able to afford it - and feel better being "even" now. I never went back to my (awful) job - got a new one and love it. my hair has finally grown back and I'm about to ditch my wig - which is a bit scary as noone at work knows I wear a wig, so it will be a surprise when I rock up with a new hairdo! Currently on holiday in Mallorca and enjoying the sunshine with my DH and 8 year old. Constantly worry about it coming back, but the anti-anxiety meds help with that! Cancer really is the gift that keeps on giving!

[Silkierabbit]

Welcome Zorgo Hope you have a lovely holiday, well deserved after all that treatment and hoping it never comes back.

[thereisonlyoneofme]

Thanks for the new thread. Im currently NED after 14 cycles of chemo and radical debulking for Ovarian cancer. On a PARP, BRCA negative. Hoping it works for me. Im on my own with no family so my friends are so important , they have been amazing. Im 74 (can hardly believe it ) with a cocker spaniel as company. Im trying to do as much as possible while Im feeling well. WOuld like to be brave enough to holiday abroad solo but off to Portsmouth and Isle of Wight next week instead (IOW is abroad right !)

[thereisonlyoneofme]

Actually if anyone on the IOW is on here and wants to meet up for a coffee etc ?

[Kittyshopping]

HI everyone. It's a while since I posted but long story short, I have a "tiny" liver met following surgery and chemo for bowel cancer. Surgeon saw me yesterday and kept emphasising how small this lesion is (7mm). Nonetheless, it needs seeing to! She offered me the choice of surgical resection (open, not keyhole) or ablation (one night in hospital). I'm not sure there is a "right" choice but wondering if anyone has experience of similar? TIA.