Cancer support thread #72 - come in, we're here for you

[Bloodybridget]

Welcome to the new support thread for anyone who has cancer, at whatever stage of treatment, is worried about symptoms, or is waiting for tests or results.

This is the place to worry, moan, ask questions, share experiences and good and bad news, and celebrate milestones!

If you've got a loved one with cancer then your best place for support is probably on the Life-Limiting Illness board.

Our previous thread is here

Current members, please do introduce yourselves

@Bloodybridget thanks for asking, yes, 1 EC down 3 more of those to go (every fortnight) then 12 taxolsomethingorother + herceptin weekly, so it’ll be a while yet before that’s all done, but at least I have the first one under my belt now and a bit better idea what to expect with the side effects.

However a silver lining - I also have pretty bad asthma but the steroids they’re giving me with the chemo mean for the first autumn/winter in years I’m able to go outside into the cold straight from a warm room without coughing and wheezing. Amazing!

Oof long day . Travelled to Manchester this morning . CT scan on stomach to determine blood vessels . That weird feeling of dye going in .
Then to surgeon who explained everything in great detail and has decided to do operation in two stages ( although she did say I could argue the case for one op , she recommends two ). The first one is scheduled for 26th November with a pre op on 25th . I will be in hospital for 5 days and she wants me to stay local for another week.
Then a gap of 3-6 months and she will do a second op to match healthy breast to reconstructed small breast .
Chemo in between we think .
Ah well . We plod on .
Oncologist on island on 11th November .
Meanwhile it’s paaarty time .
Off to Cornwall tomorrow .
Right of to face time MIL.

Trumpton. That sounds like a marathon day but great to hear that you can have the construction as you want it. Enjoy the festival

@Bloodybridget I am so pleased you crossed the finishing line. I know it isn't all over yet though as you have 3 weeks of after effects. Falling asleep in front of Bake Off is almost compulsory.

@WTF99 love the idea of your TLC plan. Shame about the ulcers - are they affecting you're eating?

@Trumpton Have you decided whether to push for one operation? might the chemo timing affect it?

@Piggles39 I think it was me linked to that website. I bought and read the book as well which I got a lot out of. I take it your chemo is 3 weekly?

@Zorgothslugofdoom I hope you got some joy at the GPs. I get the impression that once you are on the cancer treadmill GPs try to give you whatever you need to get through.

skap at the moment I'm posting chilli peanuts into the corner of my mouth shouldn't sore I've done nothing but eat today!

.....that isn't....

Hi all.
Just been transferred onto a regular ward after 2 (very noisy) nights on the ICU
The surgery went OK, they took everything out including my appendix but luckily I didn't loose any of my bowel.
The cysts weighed a total of 50 lbs..... 😳
I wasn't able to have an epidural as well as the GA as planned so I was in agony coming round afterwards ☹️ apparently I was shaking and sobbing for about an hour before they were able to get the pain under control 😭

Fudge that sounds horrendous but so glad it is done for you. I hope you are being well looked after and feeling more comfortable now.

Oh @fudgesmummy poor you! Hopefully the regular ward is quieter and you can get some proper rest tonight.

@Skap thank you for the link! I will see if I can get the book too. No they are planning on giving me the 4 rounds of EC every two weeks not three. I was given an injection to do at home 24 hours later which should have boosted my blood count enough to make that feasible, I won’t know if it worked until I go back next week. The oncologist did say 3 weeks used to be the norm / was more standard, and they might need to slow it back down depending how I get on. Will yours be every 3 weeks?

fudge oh you poor thing that's horrendous. Have you got the pain under control now? Wishing you a quiter night.
Piggles no I'm on a totally different regime, probably because I had surgery first. I have chemo weekly for 12 weeks - paclitaxel. I think it's a bit less brutal than EC but every week is relentless and I'm told it gets harder as the weeks go by. Had number 4 today.

Brassica all the very best for today.

Sending brassica positive vibes for surgery today

Morning/evening all!
WTF sorry to hear your mouth is still so sore, what a shame, but looking after yourself with massage and anything else that makes you feel good is definitely the way to go.
Piggles that sounds like a taxing chemo regime, but if you can manage it, at least it will be over in the shortest possible time. Hope the steroids continue to suppress asthma symptoms!
Trumpton I'm sure you're glad to have a rough timetable for further treatment now. Hope you can just enjoy the festival in Cornwall and put everything cancer-related out of your mind for a few days.
Fudges hope the regular ward is more peaceful than ICU (although that was certainly not my experience, sorry to say!). So sorry you had so much pain immediately after surgery. 50 lb lighter, good grief! Have you seen yourself in a mirror yet? Very good that they could leave your bowel alone, I did have some nasty complications from mine resulting in two admissions via A&E.
Good wishes to everyone for procedures/recovery/relief from side-effects and miseries.

@Brassica all the very best for today.

Well the regular ward was much quieter, but also unfortunately hotter than the very bowels of hell
I had a long uncomfortable nights and have done nothing but cry this morning 😭
@Bloodybridget haven’t looked in a mirror yet, but waking up was just like after my 2 Caesarian sections. I automatically put my hand on my tummy, and it has gone!! 😮😁
Still very painful, feeling very sorry for myself today 😢

Oh fudges, poor you! What are you getting for pain relief? I found it very hard coming out of ICU and I'd had four nights there so had much longer to recover, with a nice morphine driver. Will you have a visitor today?

fudges Oh dear . Could you get someone to bring you in a fan to plug in on the bedside table? When I had surgery in the middle of August all the beds had fans which I learned had been donated by a former patient.

Just having a quick skim, so will read in full later.

Brassica good luck with the surgery.

Fudge wow, what an amount of weight you have been carrying round with those cysts.
Feel angry on your behalf that you weren't referred for your 'sciatica'!
Are you having pain relief through your drop or orally?
I was in recovery for ages (no Icu bed as mine was emergency post op complications) which was lovely. I found the ward way too hot. I also spent a lot of time crying, I was pleased to go home and then spent the first night at home crying as I was worried about being out of hospital
Can someone bring you some ice lollies or sorbet. I ate grapes which was all I could stomach.
I'm 3 weeks post op, although I didn't have my appendix out. I'm feeling much more like myself.

Do make sure you take it easy. Do everything very slowly when you first get up. A member of staff will be with you to make sure you are OK.

My in laws came to visit me this afternoon and my DH. I have sent him next door to the Tesco superstore for sorbet! I just can't force any food down. Hopefully I will be discharged tomorrow but not until I'm teating and have moved my bowles!! The morphine pump has been removed and I'm now on tablets and f liquid for the pain.
The delectable Dr Tom said lifting my cyst and flopping it in a bucket was one of the highlights of his career!! preens 😂

Teating? Eating obviously 😁

fudge I bet it was mightily impressive. That would be a career high for many medical staff.

Do you have to pass a pee test before you leave? I had to pass 100ml and have less than a 100 ml in my bladder. I failed the first time as I had more than 100ml left. I spent a long time in the loo on the 2nd attempt and kept squeezing out little bits til I felt as empty as possible.

Have you been given some stool softener?
Lactolose helps it come out a bit more gently.
Thinking of you

Hello. Needing a bit of a hand hold. I saw a gynaecologist for what I thought was a prolapse. However it seems that I have an "abdominal mass", and I'm getting a ct scan on Tuesday. I had vulva cancer last year, WLE, all fine now. However I can't believe I'm doing the waiting game again and I can't believe I have a uterus the size of a 5 months pregnancy and I didn't know.
I have of course googled, and I have some of the symptoms of ovarian cancer.
I can't have a different cancer in just over a year, can I?

Hello @TenaKween
On Monday I had a 4 stone ovarian cyst removed and i had absolutely no idea so yes it is completely possible not to know
I'm sure someone else will come along with more reassurance

Oh my Lord fudgesmummy, 4 stone??

Hello everyone, checking in to report all seems to have gone well today with the surgery. Three lymph nodes removed plus the port I had fitted for chemo, plus whatever was left of the lump. I’m staying in tonight and have a fetching blue tit (very blue, but not too much of it!)

Wow fudge, that is an unbelievable weight for your cysts and I guess with all the organs removed as well you must be feeling physically very empty and strange. Sorry to hear that the aftermath was so unpleasant. I hope your fellow inmates on the ward are decent enough company (not to mention their visitors- often they are more of a problem aren’t they!) Wards are always so hot and airless, I hope you find it easier to rest tonight and the bowels duly move when you want them to!

Good news about your heart Zorgoth and I hope the drugs help keep the anxiety at bay. I suspect you’ll feel better getting underway on the chemo as it at least represents an end to the waiting and wondering, although obviously it brings its own issues and can feel very drawn out.

Hope you are feeling ok post-chemo, Skap and I’m pleased to hear you didn’t have a PE to worry about as well. I would think the PICC line is worth going for to save your veins, but don’t have personal experience of that particular device as I had the port.

Piggles your chemo protocol is similar to mine, though I didn’t have herceptin (I’m triple negative). I originally started on 3-weekly EC but they made it fortnightly to blast through it. It’s pretty tough to go through, but the week off allows you to get a bit of strength back before the next and I found I was able to keep up blood count for that phase (it was more of an issue for the taxol phase as that has no slack built in). Do make sure you have help and cover for the week of the treatment at least - I always found days 4-6 or so were my trough in terms of energy. How are you feeling? Are you concerned about hair loss or any other side effects? Do ask if so as lots of us can give our experience.

That really was a wearing day for you yesterday * and lots of info to take in. Enjoy your festival!

Your massage sounds just the ticket WTF and with luck you are getting closer and closer to the day when nothing is troubling you.

Welcome Tena and I’m sorry that you find yourself with worrying developments. I can only imagine you have a nerve-wracking few days ahead of you while you wait for the CT scan and then results. Did the gynae give any indication of what he/she thought it was? Do you have people around you who know and will support you while you wait without minimising? We’re all pretty good at that here if you need to worry out loud. Catch the barman’s eye and get yourself something restorative and pull up an armchair. Try not to google though, you know yourself it’s not great for peace of mind at any stage of this ‘journey’.

Hope you’re feeling alright today Bridget. How are you meercat? Are things feeling more manageable?