Roll up, roll up and join the lacies for CANCER SUPPORT THREAD 59 - anyone with cancer is welcome (and those awaiting test results)

[WhatWouldLeslieKnopeDo]

Hello everyone,

This is the cancer support thread, which has been running for many years under different names. Most posters have breast cancer, but various other cancers are represented too! Whatever cancer you have, feel free to join us. We also welcome those who are awaiting test results to find out whether or not they have cancer. We know how difficult the waiting can be and we are happy to hold your hand. Hopefully you won't need to join us permanently

Feel free to ask any questions. There will usually be someone who knows the answer or will know where you can find it.

Whatever you do, stay away from Google!

You can post anything you like here. We don't mind swearing or complaining or angry ranting. We aren't brave or inspirational and you don't need to be either. Nobody signed up for this, but we support each other as best we can

The previous thread is here

Hi everyone!! Just wanted to check in and say hello. Glad your op went ahead LittleGrey, and hope the experimental team can offer something chewing.

My surgery in August went well, WLE and SLNB, clear margins and no lymph node involvement. Stage2, Grade 3, triple negative metaplastic BC. I start chemo on Thurs (FEC-T). I've read about fasting during chemo, has anyone done that? Tried to eat less today, but found a packet of Jaffa cakes (under my bed?!?) so that's gone now...

Hope you guys are doing ok xxx

chewing everything very firmly crossed for you

Overeggedit I'm glad your surgery went well. Good luck for chemo I'm sure someone discussed fasting quite a while back. It might've been Boobz, but I'm afraid my brain is extra fuzzy as I'm having my chemo at the mo. Make sure you discuss it with your team if you do decide to try it. And at least the Jaffa cakes won't tempt you now

LittleGreyCat excellent news I hope you're being spoilt!

Twitter sorry your manager is so unsupportive but well done on getting back to work. I hope today's chemo is going well.

bobdylan lovely to hear from you. I hope your return to work goes well :)

Waving to everyone from my chemo chair. I always forget just how nasty the weird chemo taste. I think it's my least favourite side effect. Bleurgh. I will be having something spicy for dinner I think!

Hi Leslie - does the spicy food take the taste away?

It's great to read such positivity from everyone - apart from your dullard of a boss Twitter. What an insensitive idiot.

My DIEP reconstruction went ahead and I am almost 3 weeks post surgery now. I have some infection and some decidedly gross scabbing on the new breast that is a bit of a nuisance but hopefully I won't need a skin graft 🤞🏻

Still don't know whether I'm going to need chemotherapy as my results were borderline so I've been referred to an oncologist for the next part of my journey and my cancer tissue may be going on a trip to the US for further testing to give us a better idea of the benefit statistics.

Wishing everyone a good week x

Hi ladies. Back at school. Allegedly doing a phased return but as no one seems to want to meet with me to discuss it, I'm just doing my own thing and going in for teaching only. No extras, no usual putting others before me. Got my CT scan on Monday and radio starts on 27th so finished before half term.

Tiredness seems to vary. I was bad on Monday with loads of pain and Tuesday but weirdly fine today. Had lots of nerve pain yesterday and nothing today. All a bit odd.

Glad things are progressing positively for everyone. Twitter, I hope your manager improves. I'm fortunate being rather off the radar in the type of job I do. My colleagues have been lovely but schools and most work places are notorious for assuming that if you are in then you are fine and glossing over illness. Also, people's views of cancer are very stereotypical. If you don't look or behave like the people on the tv adverts or openly weeping and wailing then it can't be 'real' cancer. I got met with 'you look amazing' which is nice but I don't look like they expect someone who has had four operations plus accompanying anxiety to look like.

Tony I hope the scabs clear up soon and no need for a graft I hope you get a definite answer about the chemo soon. Spicy food does seem to drown out the horrid taste quite a bit.

Flying sorry your work aren't being very helpful about your return, but it sounds like you're being sensible. Good luck with Monday's scan :)

Waving to all. Had my chemo pump taken down yesterday. Bit groggy this morning but otherwise alright :)

Did anyone see the northern lights last night? I had a peek but it was cloudy, and I'm probably too far south

Hello

Just joining you all for a bit (and maybe longer) while waiting for results. I am 55 and 3 years postmenopause. After experiencing a discharge and bleeding, and UTI symptoms, I've had a transvaginal scan plus a hysteroscopy and other explorations under general anaesthetic yesterday. The findings are "malignant looking mass anterior vagina entire length into lower third, extending to cervix but not involving, no evidence of bladder invasion but mass effect visible." Biopsies have been taken and an MRI is planned for next week to check the position and I'm guessing the spread of the mass. I should have an appointment in two weeks to discuss all the results. Meanwhile, I'm in a state of terror and also very upset to see my DH visibly distressed. We don't have kids, but at some point I may need to break the news to my elderly dad and brother. Just looking for some hand holding while we wait. Thanks :-(

Good morning TheFarSide, but I'm sorry you've had to join us. The waiting for results is often the hardest part. Even when it's bad news, it can feel better to know and to get started on a treatment plan, rather than all the swirling doubts and fears

Hello Far

Sorry to see you joining the thread but you will get good support here.

When I got my cancer diagnosis I went quite numb and the terror stayed at bay long enough for me to get to my GP and get something to tide me over. I was prescribed some Diazapam and I have to say that they really helped (I didn't feel "high" or drowsy at all, they just smoothed the edges. One day I decided to not take them and had myself a good old fashioned panic attack complete with vomiting and diarrhoea). I'm now on citrolopram. I'm not sure if this is something you'd consider?

Other than that I've been meditating using the headspace app. I'm finding this enormously helpful.

The waiting is very hard.

Thank you both. From what I've read of other people's stories, the initial suggestion that you might have cancer, plus waiting for the diagnosis/test results, can be pretty difficult. Although I'm guessing the rest of the journey is no picnic either!

I really think the waiting is very hard. Once you know what you're contending with you can start putting it into context and things tend to move pretty quickly. I was diagnosed with BC on 26th July and had a mastectomy and full reconstruction on 19th August. There really wasn't time to think too much about what was happening! (Admittedly this is through my private medical health insurance but the NHS have tight guidelines and pathways to follow with cancer diagnosis and treatment)

I went out quite a bit during the wait for diagnosis, arranged lunches with friends and family, I went to a fantastic spa and had a massage and other treatments, I took my dog for long walks and listened to audible books. I really had a nice time and it distracted me.

Hello Far
Waiting is definitely the worst time. I had 2 five-day stays in hospital in March and April waiting for tests and results and it was a relief to start chemo for ovarian cancer on 19th April. I'm sorry you find yourself here. It's such a huge shock...

Hi Leslie when you say they've taken the chemo pump down, does that mean you're having a rest from it for while? Or giving you a new one?

I can't figure out how I feel when people say "But you look so well!" "You look amazing..." Which they do, quite a lot. I tend to just nod and smile...

hello everyone, Ive been lurking on here, but not had the energy to type at all. I had my mastectomy on 30th Aug & auxiliary node clearance. I had 2 drains in for a week, the pain from those was awful & I've felt so much better since they've been taken out. No pain from the mastectomy at all really, its been nerve pain in the top of my arm & the tightening in my armpit thats been bad, but its getting better each day as doing the recommended exercises.

I get the pathology results late next week on the stage of the cancer in my lymph nodes, and confirmation how many tumours my breast had, as its multifocal breast cancer.

I am terrified of getting these results. I already know its er & pr positive, her2 negative. I will have to have chemo (also dreading that) & radiotherapy. Will also find out if I am to get tamoxifen too.

Thinking of you all x

Thank you everyone for your kind words, and for sharing your stories. I am so worried about my DH - he's been crying several times today, which is not like him. We're both falling apart and I haven't even been diagnosed yet!!! I do know I will cope because I know how to ask for help and how to give myself treats (I love your list of distractions Tony!) but DH tends to bury his feelings.

to you and your DH TheFarSide. I think the word we use a lot here is doable. Cancer treatment isn't fun. But we get through it, mainly because there isn't much choice. But it's definitely the unknown that seems to mess with people's head the most.

Sass surgery is exhausting. I'm glad you're more comfortable now. Keep up the exercises :) fingers crossed for your results

Twitter I just have the pump for about 48 hours each fortnightly cycle so now twelve days of freedom. Well, eleven now I think but my brain is frazzled! I get those comments a lot too and just say "thanks" and try to change the subject. I suppose it's better than "wow, you look shit", but it is a bit awkward really!

Tony that's a very comprehensive list of distractions/treats - though would be nicer to indulge in without the pesky cancer business lurking in the background, of course! :)

I have been lurking forever since January and haven't written anything since my lumpectomy in February and clear SNB result.

I am going to the hospital today, due to have DIEP and reconstructive surgery (f* you, BRCA2!) tomorrow. Have been waiting for the date for so long, am really happy it is finally here but, understandably, feeling nervous.

Sendind everyone & . I pop onto the thread every day, so am a regular lurker, and I wish everyone a good start to the week.

And yes, it's my birthday today but I keep thinking that a relatively crappy birthday this year will buy me many more birthdays to come and that I will see my 5-year old grow up. It's what keeps me going.

Love to all!

Happy birthday, Balkan. I am sure the surgery will go well and you will have a shiny new boob. I've just been waving my norks at the radiotherapists for my CT scan. They were lovely ladies and keen to put me at ease. I have found it pathetically gratifying when they a) tell me how young I am and keep saying I am young (I'm 52!) and b) how well my scar has healed up (even though this is nothing to with me). I feel I should have one of those stickers that kids get at primary school which says 'good healing'.

Wishing you good healing and sending positive vibes.

Happy birthday balkan and good luck for tomorrow here's to a swift and comfortable recovery

Flying good luck for CT results :)

I'm just having a blood transfusion. Quite sleepy so hopefully it'll perk me up!

Evening all, I've been reading but mainly lurking recently. leslie hope your transfusion has perked you up and helps you get over the chemo, do you have it every fortnight now all the time or is it just the current series?
chewing thinking of you as ever and really hoping there's a new trial for you at your next appt.
Welcome to all those new here, it's a good place to come at a shitty time.
I find myself increasingly seizing up from the letrozole, in the mornings my ankles don't work at all and my knees aren't much better I may have to call the BCNs to see if they can advise anything I can take. The complete wiping out of oestrogen is not kind, I feel like that (Shakespearean?) phrase "shrivelled". All the lubricating hormones have gone and I'm drying up! I shan't be at all surprised to start creaking soon....
If it's a 10 year course, I have 9.4 to go.
Ah well. Waves to all

Happy. Birthday Balkan and welcome to the DIEP club. I hope your surgery goes well tomorrow and enjoy the morphine pump!

Something that helped assuage my nervousness was the thought that although this was a big operation for me, for the surgeons and staff this is a routine, everyday procedure. You will be well looked after and given lots of painkillers PLUS a lovely new boob and a flat stomach to look forward to.

All the best to you

hi pepper i am also in the letrozole hobbling club - 18 mths in- i have found im feeling better since being on the calcium/vit D tablets prescribed after my dodgy bone scan, have you had your scan yet?

the bone consultant ive seen said they are regularly give all letrozole users the infusion ( Zoledronic acid ?) now every 6 mths regardless of the results of the bone scan - this is in the cardiff area

Interesting about the infusion for letrazole users. I'm waiting to start creaking especially as I am back at work so not doing so much walking. By the time I get home, I am shattered so going out in wind, rain and general murk whilst feeling a bit dizzy from fatigue isn't appealing.

Wishing everyone well.

I do have the 6 monthly zoledronic acid infusion - first one with my last chemo and 2 since, I thought they were to protect against osteoporosis and help prevent bone mets?
My bone scan was normal apparently, I was a bit surprised as I'm hypermobile (much more fun when you're younger! less so at 48) and have effectively already ruined my right wrist where the cartilage is eroded. I spent 2 years in a fixed splint till I had an arthroscopy to cut away the frayed edges! So they did warn me that letrozole may be a bit harsh but to see how it goes.
I do pilates twice a week which really helps loosen everything up again. I take Vit D but not calcium? They prescribed the Vit D initially but only till my levels crawled up to normal
Maybe calcium would help as well, (does nesquik in milk count )

Sorry to hear so many of you are creaky! I hope they can find ways to ease it a bit

balkan I hope you are recovering well and taking it very gently

Hope everyone is plodding along ok. Thinking of you all fondly.
I got my biopsy results on Tuesday from the tissue removed during my tumour removal. Sadly it's higher grade than expected so my easy, treatment free recovery is now 6 weeks of radiotherapy and a month of recovery, followed by a year of chemo. Not ideal, but I suppose as there's no actual cure for my particular cancer anyway it's not the end of the world.

Oh bugger LittleGreyCat I'm sorry the news was worse than expected when do you start the radiotherapy?