Cancer Support Thread 89 - the best thread that no one wants to be on.

[LemonDrizzle10]

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Thanks for new thread Lemons

Thank you from me too.

Here's a share token for the Times article - https://www.thetimes.co.uk/article/0c887d68-314b-11ee-b04c-88a034803f06?shareToken=28f6fea4ba550262ebcdee314eb7bc4e @isaxx - and sorry for where you are at the moment, I was there for a few weeks, biopsy of what might have been a recurrence on my vaginal cuff, I was convinced that it was, but in the end it wasn't and life is slowly going back to normal.... Those weeks were hideous though - it's the uncertainty and not being able to plan anything that was getting to me as well as (possibly even more than) the consequences if it was a recurrence.

Thank you for the new thread.

I’ve had my third chemo for primary peritoneal cancer and the CT to check if it’s worked enough for me to have abdominal surgery. (Which I think will be fairly massive and I’m not looking forward to).

So any suggestions of things to watch or read when I’m recovering from surgery? Or other ideas to occupy my time? Even to speed my healing? Ease my recovery?

Didn't actually start out thinking I’d ask this! Just wanted to be able to access new thread easily.

But advice would be good, so that I can be prepared. Think surgery will be in September

Red I had different surgery as breast cancer but things I got were a reclining chair from IKEA so could be comfortable but on an angle which helped with drainage as no drain in, people usually just get wedge pillows here, the chair seems to be a us thing but cat and I love that chair. Then loads of fleece blankets and cushions so all is soft. I got a washing up bowl full of soap and water for the start so I could wash hands or hair without moving much. A big fleece onesie. Then Netflix, Hayu for Below Deck. And painkillers as NHS gave me none. And have a few nice days out before to make it easier to stay home if possible. It was only about a week both times before much better.

I also put a little table by the chair so everything easily reachable without bending over.

My chair now taken over by Floof.

It's worth asking your team if you need any post surgery clothing, for the breast you need post surgery bras but they don't mention it to day of surgery. If you can find someone who had same surgery before they are best to ask.

I've been processing..even though have my first proper cancer appointment tomorrow despite knowing for a 6 weeks and have so enjoyed paramount plus.. 1823,1923 and yellow stone
Something I there at times about native American Indians and cowboys actually working together..and how bad UN's are ban UN's.
I love films etc...the actors are sublime..Helen mirren, Harrison, Kevin Costner x

Thanks for the new thread @LemonDrizzle10 the last one got filled up in just 6 weeks! Two more threads and I’ll be through treatment hopefully.
For those recently joined I am an old lag round here as I have been through primary breast cancer treatment twice in three years. BOGOF I think.
I finally got the next course of chemotherapy tablets delivered this evening so I have restarted with grim resignation. I should be okay for a few weeks till they build up up to a rolling boil and my feet fall apart again.
I have got quite hooked on MILs murder mysteries. There are some written around Dartmoor and some for Exeter which are fun as I know all the locations the actions takes place in.
@isaxx it is so hard to stop your mind from going down the dark hole but common things are common and we can’t all be in the Low Odds Bin. So I keep telling myself anyway.
I have signed up for another Moving Forwards course in November with Breast Care Now. The last one I did during lockdown and it wasn’t much help.I think face to face will be better and a day out too! I hope they are prepared for all the pent up rage I intend to offload. Still it’s ages away still. Three threads worth!
Keep plodding onward folks. When you are going through hell keep going!
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Hi all thanks for the new thread!

I was on a previous thread years ago with the lovely Leslie, I have stage 4 melanoma and recently received the golden No evidence of disease, still on immunotherapy but oncology is very hopeful I might stay this way for a long long time.

Thanks @Silkierabbit and @nappybrained . Good point about post surgery clothing - I think some groups talk about abdominal binders- guess to support abdominal muscles afterwards
I will remember to ask.

Font of knowledge and experience, this thread. X

Thanks for the new thread.

I've got my consultant appointment today for the results of my MRI and blood tests. I've paid to see them so I don't have to wait another 4 weeks (having already waited 2 since the scan). Very fortunate to be able to but now very nervous. Sleeping was tricky last night. Also have to give 2 under 5 year old DC to my FiL for a few hours and nervous for that! He's not very mobile and they can be very tricky.

All I can think for abdominal surgery @RedRosesPinkLilies is big pants! Like after a C-section. I'll be presumably having surgery to remove my tumour at some point so will let you know what I find out. For things to watch, I'm watching Killing Eve from the start and enjoying that. It's on iPlayer too.

Still plodding on in Italy. Gradually breaking news to family and friends and making as much light of it as possible. Am too proud to cope readily with sympathy.

Thanks for the thread @LemonDrizzle10

@Silkierabbit that's a fine cat you have there! Will he get bigger?

Chemo 12/18 for me today. When I spoke to the BCN yesterday, she confirmed that they're very likely to go for the full 18, since I've had no real side effects.

She's off now for just over a week but is going to refer me to a dentist to sort this tooth out - it's annoying me now. & it was painful last night but that's subsided this morning.

I had problems healing after surgery @RedRosesPinkLilies - or to be more correct, after radiotherapy which was done with a large hematoma in situ, that caused the wound to open. Several months down the line, a doctor mentioned taking a high dose Multi-vitamin as well as a Vitamin C tablet. Not sure it would have helped, but made sense, and I have healed faster from my recent surgery.

And Below Deck as @Silkierabbit says is perfect for post op mindless TV!

@RedRosesPinkLilies What surgery are you having? I had debulking which was knicker line to belly button, or do you think you will have knicker to bra?

I bought cotton nighties from M&S so not waistband, and biiiig cotton pants. Sadly for my husband they are so comfy that I now only wear massive pants. Bridget Jones was on to something there.

I can only tell you my recovery experience which may differ to yours, I was up and shuffling around by day 3, home on day 4, it nearly finished me off climbing the 3 flights of stairs to my room but within a few days I was nipping round the house as usual. I found getting up and down from sitting/lying most difficult and did struggle to get out of bed for a couple of weeks. Mostly I think as I was worried about just ripping open like a coat. I watched a lot of series of telly (Apple TV has some smashers on if you want new fodder, Severance, Shrinking, Big Door Prize, Black Bird, Finch, Hijack, Bad Sisters and more were all great), had my PlayStation up in the bedroom so I could game if I wanted to and basically just snacked and lazed around. I did some gentle scar massage and have no palpable scar tissue. I also bought and used a headband/eye mask with speakers in so I could listen to audiobooks while I could only lie on my back.

Thanks for the new thread Lemon, for newcomers I was diagnosed with stage 3 low grade ovarian cancer last year at 36. Had surgery, chemo and now on anastrozole hormone inhibitors so suffering an unpleasant, cold Turkey menopause!

Thanks Lucy Yes I got Floof as a 13 week old kitten in my chemo so now he's 1 and will grow until 4 or 5. He has huge parents so think he'll be one of the biggest boy Maine Coons, he's about 1.15 metres at the moment and 8kgs. He trills all day long and wants to play a lot. Glad you are getting a dentist.

I went swimming again yesterday and did 103 lengths of 15 metre pool. I am up to 200 minutes of moderate exercise each week now average for 2023 which happy about as its within the 3 to 5 hours recommended after treatment. I take a well woman 50 vitamin sometimes though in chemo they don't like you taking vitamins apart from a few so best to check. I had to have quite an iron rich diet with lots of spinach etc in not to feel weak then.

I love Below Deck esp the Australian one. I also liked the Netflix films about woman boating around the world.

I binged watched the outlaws on BBC after my hysterectomy and did a lot of knitting! During chemo when I was on the exercise bike I watched Emily in Paris on Netflix. I basically just watch things that keep my stress levels low, such as house programmes!

Consultant appointment done. My tumour is filling my pelvis - the MRI was really interesting but also a bit daunting cos it's huge! He said my blood test results are good and that he's 85% sure it's benign and that if there is cancer then it's a small part and not the whole tumour which was my worry.

I have to go and see the consultant in the NHS drop in they do next week (this app was private) I'll have surgery in the next 6 weeks and it will be vertical, from my belly button down. They'll remove the tumour, one ovary and a fillopian tube. It sounds like the incision will be like yours @AGreatUsername. How old were your DC? Mine are 3 and 5 so I'm already worried for recovery, never mind the actual surgery!

Hi all, hope I'm allowed to post here as I don't have a diagnosis - waiting for results of a biopsy. How on earth do you deal with the waiting? I only had it done yesterday, no idea how I'm going to get through the next couple of weeks.

The consultant wouldn't give anything away, except to say that she was "very worried" twice. Is it naive to think that it might still all be fine?

@Silkierabbit that is one marvellous cat.

When I first went to the BC clinic @MarisPiper92 , I asked the radiotherapist when she thought I would be told if it was likely to be cancer, and she said it was more suspicious than not, but it was small and could be dealt with.

From that moment I worked on the basis that it was cancer but - as she said - it wouldn't kill me. Twelve months on, I'm glad she was open as I felt I wasn't 'waiting', but just needed to be given the plan. Thank God I went for my mammogram!

Thanks @ajandjjmum, I'm glad you're doing ok. Sounds like you found just the right question to ask. I asked the consultant how bad she thought it was, and she said that she was very worried and recommended an ultrasound and potentially an MRI. I think, like you, I will proceed on the basis that it probably is cancer, and hope that it isn't too advanced.

@RedRosesPinkLilies my scar is from below knicker line to about 2 inches above my belly button. I also think big knickers in a size up so no rubbing if your scar is long like mine and I wore soft pyjama bottoms round the house for a good few weeks afterwards as jeans or normal trousers just rubbed if I had them on a long time. I would wear them if I had to go out and change into my looser bottoms once I got home. It's hard but I would accept any offer of help for anything, looking back I was rather too keen to be 'seen to be coping' which is silly. As others have said, when you're home and recovering and want to sit and watch television or do your crosswords/knitting/chat on phone or whatever, have a little station next to you before you sit down with phone, charger, notebook and pen for when the hospital or anyone calls, tissues, water, just everything in one place so you only have to get up to go to the loo.

@Florabritannica I feel for you, telling people is hard.

@MarisPiper92 the waiting is honestly the worst part and once you get through this and know what you're dealing with, you honestly will feel better. Everyone said it to me and I didn't believe them but it's true. It is torture while you wait though, we all understand here. I was told at my initial gynae appointment that my growth was highly likely to be malignant so I was prepared in some ways for my diagnosis. I'd also have several months beforehand where they were investigating me for a blood cancer (eventually negative) which I suppose did make it easier. I was finally diagnosed with stage 3c ovarian cancer.

@Lemon thank you for the new thread.

Welcome Maris and thanks for Floof comments.

I have had quite a few cancer tests and the difference with the ones that showed cancer was the doctors (not GP) saying they believed it was cancer. In my case at biopsy they said it was 100% certain. Worried is less clear cut but if its a test which can only show cancer they might be trying to prepare you for that. It's very uncommon for cancer to be picked up at advanced level initially but very normal to fear the worst. I found distraction was best and pretending it wasn't happening to me. Lots of mindless TV, music. What cancer are they testing for?

@MarisPiper92 welcome! I am recently diagnosed. Like @ajandjjmum after my first mammogram and ultrasound I asked the consultant to tell me all the things it could be from best to worst and she said ‘it’s very likely to be cancer.’ So I worked on that basis from the beginning.