CANCER SUPPORT THREAD 65 - for anyone with cancer or waiting for cancer tests (pets welcome!)

[WhatWouldLeslieKnopeDo]

Good morning everyone,

Welcome to the new thread, and the club that nobody wants to join. Our previous thread is here.

Anyone with any type of cancer is welcome. And we will hold your hand if you're waiting to find out whether or not you have cancer at all.

If you've got a loved one with cancer then you can get support here.

Please feel free to reintroduce yourself so we don't all have to remember from the previous thread!

I'm Leslie I have stage four colorectal cancer (lung mets and lymph nodes). I've been undergoing chemo and targeted therapy for over two years now - FOLFIRI and cetixumab. My latest scan showed the tumours were stable :)

Another one with stage 4 colorectal cancer but I had liver and lung mets, the latter being a new arrival! Diagnosed just over a year ago and muddling on as best I can. Am 34, no DC, busy life, angry cat and farting puppy!

Big fan of and sleep.

Stage 1 (I'm very lucky) breast Cancer fingers crossed hasn't spread for now. 2 rounds of chemo, next one due on Tuesday hopefully.
Waves to everyone and when my pesky felines come in I'll try and get a photo!

Ooh the old thread filled up fast
34 year old. I was diagnosed with cervical cancer back in October 25 lots of radiotherapy, 5 chemo
Follow up scan in June showed that it had spread to liver and bowel. Now currently not curable but still treatable. Having 3 weekly chemo at the minute

What part of the surgery are you worried about Tahiti? I love the general anaesthetic, I think of it as having an extra sleep and I always get a cup of tea when I wake up

Ranout you must feel so much better having a plan in place. Chemo is definitely doable but any questions feel free to ask us lot as between us we've had every side effect going

Leslie have you been to a hospice? They mentioned it to me when I was told that mines incurable but I think I was in shock so didn't pay as much attention as I should have done

I love the general anaesthetic, I think of it as having an extra sleep

Ha me too! Glad I’m not being a weirdo anout that!

I have never had an anaesthetic before. But you make it sound so lovely - who doesn't like sleep?

I'm scared that I'll feel the surgery and they won't realise, that I'll not wake up, that it will be gross and messy and hard to recover from etc. Just scared in general. I don't want to know many details about it, I'd rather just go to sleep and wake up and let the doctors worry about it.

I'm a mature student and yesterday was my first day back for year 2. I am studying photography and I want to try and carry on. This year is all about specialist practice so I can do any type of photography I like. Probably documentary/reportage. I'm wondering how to fit in uni work around being in hospital. Luckily, I'm a bit of a tutors pet so they're going to extend deadlines as required. I'm wondering if I can do anything hospital/treatment related now, so I can work even if I'm laid up. But nothing where I'm the focus - I don't like being in front of the camera, just behind it!!

Waves at everyone

I'm stage 1 breast cancer. My radiotherapy starts in 3 weeks and I'm on Tamoxifen for 10 years. I'm 39.

I've just been for my first swim after my lumpectomy. I was nervous as I've always got changed in the communal room (long limbs bumping into cubicle walls) but my scar is above my bra line. It was fine

Hello, found you - I was just catching up on the old thread. Wrote a post and then found it was closed, so cut and pasted below.

Quick intro from me. Stage 3, grade 3 invasive ductal breast cancer, ER/PR/HER2 positive, dx Nov 2016. Mastectomy, recon and node clearance Jan 2017, followed by chemo, rads, herceptin, hormone treatment. Recently had oophorectomy.

Hey up lacies. Doing my usual moseying in to say hello. Delighted to see the furry friends. We got a cat last year and he's just wonderful, for me and DS.

Sorry to see some new names and also very sorry to hear your latest news TQ.

Ranout, I was interested what you said about requesting/refusing treatment. When I was first diagnosed, before full pathology and finding out the full extent of spread (8/14 lymph nodes, one other tumour, plus DCIS), I said I was considering refusing chemo and only having herceptin and hormone treatment. The full diagnosis meant that wasn't an option, but I requested and was given weekly paclitaxel. There were other things around my treatment too that were definitely 'don't ask, don't get' - no one in my health board gets a PICC line as standard (and ports aren't an option at all), but it was available when I asked for example. And I found out from my plastic surgeon that it's possible to remove lymph nodes through the mastectomy incision rather than cutting the axilla, so I asked my surgeon to do that. More difficult for the surgeon, but better for the patient. His assistant was a bit of asshole actually, she came to see me after my op and told me how difficult it had been for her and she'd said 'just cut' but my surgeon refused!

Can I join the belly button club? I've recovered well from oophorectomy, apart from the incision in my belly button. It's truly manky and I'm having to go to have it checked and dressed every few days. It was very satisfying pulling out 3 cm of stitch last week though...

On that note, I'll leave you with a pic of my wee furry face. (Actually I do have a furry face these days thanks to early menopause, but I don't mean that one!).

Tahiti I honestly don’t think you’ll find that. I’ve had quite major brain surgery (unrelated!), 2/3 of my liver out and a whole heap of smaller ops and I haven’t woken up in loads of pain any time. They talk you though all that, and any options you might have in advance. The most recent op I had was on my liver in April and I was in on Thurs and home and shuffling around Waitrose on Monday. They are really keen on getting you up and about as early as possible and that did me loads of good.

Not gross or messy at all in my experience. Other than the food! .

Photography sounds fab!

Tahiti they give you painkillers through a canula before you fall asleep and they keep you topped up with them so you won't feel a thing. If you have any discomfort when you wake up they'll give you more straight away and they work really fast. You won't be in any pain

Flippy that is a beautiful cat! I'm allergic to cats but I do quite like the bald ones. Although my son thinks they look like a ball sack

Hello! Call me TQ

Dx with stage 4 ovarian cancer in March 2017. Chemo (IconB8 trial incorporating Taxol, Carboplatin & Avastin) hysterectomy & debulking, chemo. NED August but recurrence by November so had to come off the trial. More chemo (Caelyx) from January. I've had the summer off treatment for some R&R but need chemo again now. Waiting to hear about any potential trials, otherwise will be back on weekly Taxol (aka Paclitaxel) very soon, ie when symptoms/pain get too bad.

Single parent of 59. Three very lovely DDs, one at uni, one just returned, one happily & recently ensconced with partner, new job & new house 100 miles away.

Flippy he is very cute.

Tahiti I've had 5 operations for other things. They are extremely good at what they do. You'll have to report back on what food they give you afterwards. Most people here have had toast. I was actually disappointed to be given a sandwich so I couldn't join in with the toast comparison

Toast is so much better than a manky sandwich!

Tahiti, I'd never had a general anaesthetic until I had the mx. I totally understand what you're saying, I felt the same way, the anaesthetic part was absolutely fine. You can ask for pre-meds which can take the edge off the anxiety.

Purple, I am allergic to cats too, but my boy is a Russian Blue - they're a 'hypoallergenic' breed, for most people anyway. Pet allergies are mostly caused by a protein in saliva, when animals clean themselves the saliva dries and the protein is released in dander - Russians don't usually have that protein. He doesn't trigger my allergy one bit! So ball sack bald cats may not be the only option .

My husband has CLL, he’s 33. At the moment I am waiting for his latest blood test results I’m so scared he’s in the appointment now while I’m home with baby and toddler

Oops sorry I posted in the wrong thread

It really is Name. Thank goodness they had chocolate biscuits too.

purple no, I haven't been, but the nurse is referring me for complementary therapies there so she's going to meet me there for a chat and to show me round. She suggested I bring my parents so they can see it too. She was so lovely. I definitely recommend speaking to them :)

Flippy sorry to hear about your belly button issues

Tahiti I hope you can fit your studies around your treatment :) I also enjoy general anaesthetics . It really is just like a very deep sleep. I got really grumpy once when they woke me up

Waving to everyone

Hello Everyone

I have incurable appendix cancer. Appendix burst in Jan this year but I put the pain down to my Crohn’s disease. End of Jan went to hospital as pain was awful and I could feel a large lump in ascending colon. Diagnosed soon after and had 10.5 hour op and HIPEC mid May.
Had bits of rectum, colon and intestines removed and now have a stoma. Also removal of gallbladder, spleen, greater and lesser omentum, womb, cervix, Fallopian tubes, ovaries, part of vagina and then liver, peritoneum and diaphragm were both scraped and cauterised. Also mourning the loss of my belly button as the cancer cells had burrowed in there too, the little shits.

Found out about four or five weeks ago that the operation was not successful in getting all the cancer cells out and that it’s back on my liver and there are several growths in my abdomen. This is a mucinous cancer (Sometimes called jelly belly) and it’s high grade so is fast growing and aggressive. Because appendix cancer is rare there are no stats as to how long I have in my current condition.
Currently having six moths (8 rounds) of IV Oxyplatin and oral Capecitabine in the hope of slowing the growth and spread.

Not being miserable about it though and rather like having the dubious pleasure of being a member of the missing or wonky belly button club

Minnie that's great about the swim :)

Another one here that loves an anaesthetic!

Tahiti - Very pleased to read that no other organs are affected. What a huge relief for you.
I too have worried sometimes that I’ll be awake during an op and they won’t notice but you’ll meet the Anaesthetist before your op and you can tell them your worry and they’ll reassure you. Honestly, that floating off to sleep feeling is lovely and then you wake up in recovery with lots of lovely staff fussing over you.
Post op pain will be managed and should be minimal. If you have a strong stomach I’m happy to post a photo of my stomach taken about 2 weeks post op. The only time I had any great pain was when the epidural became dislodged and had to be removed early. Other than that it was more a discomfort than actual pain.

I hope that’s helpful and eases your mind somewhat

IV Oxyplatin and oral Capecitabine

Ooh snap! Same here! Three week cycles for 6 goes, then scan time!

Hi Namechange

How far along are you now? I’ve only had one round. Should have 2nd next week if port infection has cleared up. How are you finding the side effects? x

4/6. Side effects totally doable. I miss ice cream and cold drinks is the first week, and hands are bit tingly, but nothing much to complain about!

I haven’t needed any time off work or play (ha like there is any fun time in my week!) but I am definitely quite tired in the first week. I just fight through with some easy gym training and dog walking and that seems to be what works for me. Oh and cake!

Interestingly no hair thinning at all this time, last time (Sept to Dec) I had a lot more drugs and all IV and it was falling out left right and centre! Joy.

Hope you’ll be cracking on with round 2 soon. How were you feeling after round 1? Infection is tedious! I have a picc line rather than a port, not sure if that’s higher or lower risk or if we’re just going to get what we’rE going to get!