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.

@OriginalFloorboards welcome to our group, of course it's fine to post here and we will all help you as much as we can. I think that a telephone consultation would be more likely to be good news and that a face to face consultation could be either. I agree with Silkie - from my experience, if they suspect cancer, they tend to mention it early on. I was told from a CT ordered by a Haematologist (to check my liver and spleen) that an ovarian mass was 'a high possibility' of OC when I asked. Just 3 days later at my initial gynae appointment I was told (without me asking) that it was 'almost certainly malignant' and then went straight on to tell me I would need surgery and chemo. This was before any biopsies were done.

@mowly77

We are ok. She has what's hopefully just a cold but we are on day 4 of fever and exhaustion, having calpol etc night and day. Her day to day hospital paediatrician is aware and is willing to check her out today, but she's feeling a bit brighter this morning, so hopefully not needed.

Its bringing back a lot of bad memories though as the last time she had a fever, it was proper panic stations in the hospital (it turned out to be c diff) and the fever before that was meningitis, but equally, kids get bugs...

I've looked to the stats and the likelihood of it starting to grow again is about 75%. I'm lucky in that the risk of her dying from it is small, but the idea of repeated brain surgery or juggling starting school with long term chemo etc, possibly neurological consequences of surgeries etc is scary. But it's also a privilege to be able to worry about the future, and I'm very aware of what could have been.

Hi @OriginalFloorboards , we have spoken previously on the womens health board about these things.

You’re very welcome here. I also posted pre diagnosis but sadly am now diagnosed with ovarian cancer as my ascitic biopsy came back malignant. (Unless by some miracle they have made a terrible mistake). I am having my debulking surgery next week.

Both the gynae onc who did my scan, and the gynae onc surgeon I saw after my CT were very open that they thought it would be cancerous. The news they “only” found 2 masses (one on each ovary) was given face to face, the news the biopsy was malignant was over the phone. I think it could be either for you but I am sending you lots of luck.

Thank you @Fantasea and @AGreatUsername for your replies.

I was wondering how you were doing @AGreatUsername and have thought of you. I am wishing you good luck for your operation next week. I am sorry you are in this position and I hope it’s good news after your operation in that it’s all gone.

Thank you @Fantasea for also responding. I really do appreciate it. I am sorry to hear about your diagnosis. I do hope your surgery and chemo respond well. It must have been very worrying having that mentioned early on and not having that confirmed until later. The waiting to know and have a plan must have felt forever.

I think because I haven’t seen an ‘actual’ consultant yet it’s difficult to gauge, but like you all say it may go either way. My hospital
seems to be gathering test results before I even sit with the consultant. I’ll just have to keep myself busy.

In the meantime thank you all for replying. You have made me feel much better. More prepared. More in control despite the fact that I’m not (mentally I feel I am).

Once again, apologies to everyone on here for disrupting your chat. Sending you all my best wishes.

@OriginalFloorboards oh you're very welcome. In a way, I had 3 months to start to come to terms with a firm diagnosis as it took them that long with all the faffing around to do a biopsy and get the results, so I feel I was 'prepared', well as prepared as I could be. The waiting is dreadful but once you've received your news, it eliminates all the 'what ifs' and then you know what (if anything in your case) you're dealing with. Thinking of you for Tuesday. Please don't feel you have to go if you'd prefer to stay, lots of ladies join the thread whilst they wait for a diagnosis Xx.

My best friend did Race for Life in my name today…donations have totalled £1020 so far!

Surgery for me tomorrow. Feeling horrifically anxious.

Love to you all as usual xxx

(Wrote a great big post then, chatting to you all and the page bloody refreshed and it all got lost. Happens every time I write more than 6 sentences!! 😡)

Hope it goes well tomorrow TwoNoisyBoys Both my surgeries were fine, and not that much pain (its the arm that hurts rather than breast) and about a week of that then fine, won't say very energetic but fine pain wise. Can get a bit of fluid build up with no drain but just call clinic and they will drain it. And best thing is its get the cancer out.

AFAIK is as far as I know and just means I am not an expert but from what I understand.

10th chemo tomorrow, and 2 more weekly ones after that, feel like they are destroying my body but got to do it I guess. Though when oncologist said do you want to stop at 9 was quite tempted but asked her how would affect success rate and said don't know. Before she told me 1 to 3 don't do much then proportional and also have been on 90% since chemo 4 due to neuropathy. She said then 11 was similar benefit to 12. But will see.

Trip to Cornwall starts on 5th July so not long to go and been booking things for that and another third one-off clean. Gosh those are brilliant especially with kids and pets and a good cleaner. Posting this now as mine keep disappearing too.

Thanks @Silkierabbit 😘 I know what you mean about the chemo…I had 24 weeks in total and it’s so difficult to know what to do. I asked them not to give me any options, just tell me what needed doing, and I counted down from there. That last EC, though….😩😩 and the following up injections! Hell.

@TwoBigNoisyBoys The week before my surgery I emailed my HR director to make sure they knew to pay my death in service benefit to DH and he’d sort the kids out.
My HR director replied that he was planning on dancing the funky chicken at my 90th birthday so he’d see me on the other side.
It made me laugh and eased the tension a bit.
What surgery are you having?

@MrsPnut that made me proper laugh! I tried telling my fella where my will etc is earlier, but he told me to stop being daft.
I’m having a lumpectomy, they have said the chemo has been very successful, so are
hoping that’s all I’ll need.

@TwoBigNoisyBoys A lumpectomy is reasonably routine operation, I’m sure your surgeon does a few a week.
You’ll be awesome and in a few weeks you’ll be itching your wound carefully as it heals.

@MrsPnut 😘

@TwoBigNoisyBoys and @AGreatUsername thinking of you both for your surgeries tomorrow and hope it all goes well.

Thank you Fantasea, I’m being admitted today but have to wait until tomorrow for surgery. So nervous! Good luck to you @TwoBigNoisyBoys !

@AGreatUsername @TwoBigNoisyBoys

Thinking of you both for your surgeries today & tomorrow. Hope they go well.

@AGreatUsername this time tomorrow it will be nearly over and then you have the 'big thing' out of the way. I was so anxious too, if you need anything to calm you down tonight, just ask. I had mine on a Tuesday and went home on the Saturday, they wanted me to go on the Friday, I was so surprised at how well I was a few days later.

@AGreatUsername @TwoBigNoisyBoys good luck to both of you for your surgery. Thinking of you both and hoping all goes well.

Asking for something to calm me down is a great idea actually, I have barely slept for a week worrying about this op! They said 4 days for me so I’m also hoping for Friday, my husband is bringing my son into the dental dept of the hospital Friday morning for a check up after his own surgery so I’m hoping to juggle that with being discharged so he doesn’t have to make the 80 minute round trip twice!

Thank you so much everyone 😘 Home now, got home at 8pm…shattered and in some pain but not unmanageable. Had a chicken kebab and salad takeaway for dinner! Off to bed now xxx

Love to you all xxx

@TwoBigNoisyBoys so pleased to hear you're home, that's great news! Hope you're resting well Xxx

@TwoBigNoisyBoys I hope you’re enjoying a good nights sleep. 😊

Big day today. Took them 6 attempts to get blood yesterday, then I had a klexane injection and an enema so I’m already feeling a bit delicate even before surgery today. Barely slept then was woken at 5 to have yet more horrible pre op drinks. I cheated and binned one full one as I just couldn’t drink another without being sick.

I’m apparently first on the list this morning so hoping it’s over with quickly because I’m absolutely terrified.

Good luck @AGreatUsername at least first on the list means you haven’t got so long to wait around.
Glad to hear you got home last night @TwoBigNoisyBoys take it easy today and rest.

Aww Great Sending you love and gentle hugs. I hope it goes as well as it can today, and recovery isn't too long. At least the op presumably is under a general and once its done every day is a step to getting better and will hopefully get cancer out. I have breast cancer but when you know the cancer its out or mostly out its a huge relief though waiting for results is a bit nerve wracking but surgery is a huge step forward is solving the cancer. Fellow insomniac here just starting chemo menopause with no HRT possible. I don't know if its the same but is it that disgusting bowel prep drink, had that for a colonoscopy, its probably a similar delightful concoction if not. Definitely let them know it made you sick and any other issues if you haven't as they may have alternatives, I don't know as not done that op but worth a try. I always ask before now.

Glad you are out now TwoNoisy and worst is over, hope recovery is fairly quick.

Had 10th chemo yesterday, 2 weeklies to go. Nightmare day, DD has GCSE, that is fine then school DS has gone to registration but school can't find him after that. same as every other day last 4 years and school decide to continue with changed plan and are now calling police every day this happens, so we are on day 4 of plan, 2 days we have had to keep him home with no education and 2 days they have called police. So thought would need to cancel my chemo yesterday as police decided yesterday to send loads of police out who wanted to to search here at same time as I needed to get ready for chemo and search school and search village, he is always at school and he was at school by music when police found him thankfully just before leave for chemo. First time they then came here to interview him at 3.15pm (he is mute so that went well) and so thought would need to cancel chemo to be here for that charade. School were not answering apart from poor receptionist who took my very stressed out calls. Tried 101 but basically said someone may answer in an hour so ended up needing to call 999 to resolve this and they were lovely, knew his school and name without me saying. Police were lovely and loved the rabbit and kitten and said that DD could stay to do the interview with DS though when I pointed out to them it had been like this at school for 4 years and someone at LA has just made plan change to calling police, which will be everyday as school use his TA for other things they were like we are will be speaking with school and telling them they have a duty of care. Not happy with DD being used as she is mid GCSEs though she said she was asleep after school and did not answer door but think they did not come as no phone calls either. Got to chemo and a nurse came in and asked me if I had a relaxing morning, hmm no one child doing GCSEs, one school calling police (as well as the usual rabbit / kitten silly season though that is nice). At least 10 chemos over and DH did a bit of cleaning yesterday pre police visit and this morning ESA £400 back pay has gone in. Spent already but nice to have.

Love to everyone.