Thread #7, living with incurable cancer. Taking ALL the drugs and remembering our lovely friends

[sellotapechicken]

The other thread was full! I am waiting for the oncology assessment unit to decide what to do with me tonight. I keep spiking temps but it goes after paracetamol so they can’t decide if it’s a reaction to immunotherapy or not..

Hoping this works!

Thank you for the suggestions. Blood test this morning showed hemoglobin has dropped further to 69. No wonder I'm so exhausted. Blood transfusion tomorrow, likely two units.

Could also be the cause of the weird neck lump, which is still there.

@SewingBees goodness, no wonder you are feeling exhausted. I hope the infusion goes well and you feel better soon.

@EachandEveryone I agree with @livingwith Can you speak to someone at your local hospice or the palliative team at the hospital? You definitely need to know what the next steps are once you leave hospital.

How is everyone today?

Cannulated and waiting for blood. You?

in hell with tooth ache

Oh no, what's happened? Can you get it looked at this weekend?

My teeth are so shit because I was so sick at the beginning of treatment and my teeth genetics are beyond shite. I was eating a sandwich and half a tooth just fractured off 😭

Oh, @sellotapechicken toothache is truly one of the worst things ever. Hopefully you're able to get it looked at?

PALS response to my complaint - the Dr who forced an appointment I said wasn't able to happen because there was no available cover & on the morning notice wasn't enough? He's a locum so won't do it again. 🤔. Ok, that's that then I suppose!? So pointless. Their records also show app booked for x time and took place by y time - no, I was told "at some point" but because your records say it was on time that's ok too? Course, silly me 🙄.

Old landlord emailed earlier wanting rent for March? Erm...no, just the week we were there, not the full month mate. You said yourself 6 weeeks was to be paid if we stayed the 6 weeks the court gave us - we didn't, we stayed 5 days after court.

It'd also be pleasing to be given the meter box key apparently - that moved out of my dad's with me 20 years ago. I give not one single fuck how pleased you'd be to be given it, it's not yours. Get on Amazon or ebay - cheap as chips & fairly quick delivery. And stop fucking emailing me stupid demands - it's bordering on harassment being emailed almost every day. You wanted us out, we're out ffs! Crack the fuck on and repaint it in the poor state it is in to rent to some other poor soul if you want. Not my issue, although I really think you should do the repairs the council instructed. Dick.

To answer your question @sellotapechicken I'm pissed off at stupid people - just for a change. But otherwise ok, I think. Still waiting to hear about CT but the PALS woman did say it's been written up so presumably everything's ok? Or would they wait the 5 weeks til my next appointment to tell me if it wasn't? No idea 🤷‍♀️.

@SewingBees how was the transfusion?

I need to go back and catch up with everyone else's news.

@SewingBees how did the blood transfusion go?

@EachandEveryone do you have any more info on the next step?

@sellotapechicken Toothache is horrendous! Any better now? I am convinced my teeth went to even more shit than usual during my 5-week stint in hospital - I only managed to actually brush my teeth for the last week of my stay there due to mucositis. I did use mouthwash but it wasn’t the same.

I had an appointment with my oncologist on Wednesday, kind of a how are you doing on Epirubicin kind of meeting. Anyway, she said she is really happy with my bloods and that my next scan (due on 1st April) will be good. Which is not something she would say lightly as she usually doesn’t mince her words. Please, please be true, so that I can get another 3 months of life.

It’s not too bad actually. I’ve got some lovely antibiotics that have actually taken the pain away .. I’m assuming the abscess was there prior to the tooth fracture or it could just be a coincidence. Issue is they want me to be off treatment for the root canal and I’m not due a treatment break til July so I’m gonna have to investigate other options! My teeth are just so shit.

I now have a gap, a tooth and a gap because the obviously the tooth would fracture on the side that people see and not in my mouth. I was self conscious about my bloody teeth before this because I had horrific mucositis in my mouth, my crohns flare up starts in my mouth (ulcers) and sickness has left my teeth really gross and obviously I was already missing a bloody tooth. I feel like people do judge poor dentistry? Or it could be that I’m just so self conscious of mine 🤦‍♀️.

Erm.. thanks? Did you mean to post on this thread?🤣🤣

I mean I know I have posted about how shit my teeth are today but I’m not a child and it’s not super helpful to look at children with rotten teeth? My teeth issues are caused by my cancer treatment…

I think I know which thread you meant to post on! Yes I agree 🤣

@balkanscot I will be rooting for your scan results to be good! How are you doing on the Epirubicin?

@SewingBees how was the blood transfusion? Do you feel better for it?

@sellotapechicken tooth ache is the pits! I’m glad the anti biotics are kicking in.

@EachandEveryone how’s the weekend been? How are you getting on with the new antibiotic?

I feel weird. I’ve applied for ill health retirement and can’t believe that I’m in this position. It feels a lonely journey and I don’t like it. It’s like I’m waiting for the inevitable but don’t know when it will be and I’m no way ready at all! Living scan to scan is utter fucking shite.

@Enigma54 I don't fully understand how you feel but I know I will be resisting ill health retirement for as long as possible. I looked into it when I first had my Stage 4 diagnosis and found the criteria quite strict for drawing any of my pensions. I can't imagine not working, it's such a useful distraction. Though I think I'll take tomorrow off. Do you have plans for how you will spend your days? Can you maximise time with your kids?

I feel ok. I was knackered and went to bed at 9 last night. Alternated between deep restful sleep and tossing and turning and felt crap this morning. But have gradually got better.

I can't say I feel any different but it takes 1-2 days to notice a change I'm told.

@SewingBees I agree, working is a useful distraction and I so wish I didn’t have to give it up. However, working in a busy school, with permanent chemo every 3 weeks and bloods weekly, just wasn't working. I will need to carve a new life out for myself.

Hello lovely lot. I’m new around here (not to Mumsnet, just this particular thread).

im mum to 2 children age 8&10. I have stage 4 advanced cancer. I’ve just found out it’s spread a bit more. I’m feeling a bit shit today. Hopefully find out my next treatment plan this week.

anyway, please can I join you! Is there an induction pack available for new joiners? 😉

Hello @BetweenAppointmentsand welcome yet of.course sorry you have found yourself here. I'm quite a newcomer to this thread myself so not one who knows all about the thread etc, but wanted to respond quite quickly. I am I think more fortunate than many on here atm as I'm not in a crisis but stable on palliative treatment, as far as I know between scans every 4 months. Next one coming up soon. I hope you find out some helpful info about treatment and manage to cope day to day with this awful situation. Sending all good wishes to you and your family.

Hi, all
I have been on this board before, under a different username, dipping and out.

I’m on my third cancer diagnosis in five years. I have a rare form of breast cancer that keeps returning. I was diagnosed to stage 4 on Friday with spread to my skin. Both GP and consultant thought it was nothing to be concerned about. Consultant was so unconcerned he didn’t want to biopsy. My original diagnosis was stage 0, my second was stage 2. I’m not shocked. I fully expected it. But I am a bit numb.

I’d like to know if it’s worth trying to swap my care to a specialist cancer centre or does it not matter? I had many many failings and inadequate care at my first hospital, but how much that was down to the rarity of the cancer and the hospital just following NICE guidelines, I’m not sure. This time I’ve been referred to a different hospital. But should I aim for somewhere else?

Hello @LastHoteland sorry to hear of your latest diagnosis. I don't know about specialist hospitals but is there a charity that deals with your type of cancer, or a breast cancer general one that could advise? I do believe that your oncologist is obliged to seek a second opinion for you if you ask them, which might lead to greater expertise? Wishing you all the best.

@BetweenAppointments hello
and welcome. Of course you can join our thread! I’m just so sorry you find yourself here.

Feel free to share as little or as much information as you like. We are a friendly bunch and many of us use this thread as a sounding board to thrash stuff out
( cancer and non cancer stuff alike)

It’s horrid waiting to find out what your treatment plan will look like, so not surprised you feel shit. Do you have much support in IRL?

😊

@LastHotel Hello and I’m also sorry to hear of your latest diagnosis; that’s utter rubbish for you and so unfair. You can definitely request a second opinion ( I’ve done this) Is the hospital you have been referred to, more up to speed with dealing with your type of cancer? Did you have a particular cancer specialist centre in mind? Maybe you are a member of the stage4 deserves more and 2nds Together FB group? The members there have a wealth of information between them and are very knowledgeable.

Thanks for the welcome from you both @Enigma54 and @livingwith.
I’m fortunate I have good family and friends who are around me if I need them irl. I’m grateful for that. But I don’t want to upset them with some of the thoughts that run through my mind!
I’ve had a stable 18 months and I got quite blasé about things, but things are on the move again now. Probably heading for more chemo and radiation.

are we allowed to ask if anyone here has looked into complimentary therapies? People keep mentioning to me (well meaning) about mushrooms, supplements, re-purposed drugs, oxygen therapy, saunas etc. im
starting to think I should take the full wellness approach seriously!

No nhs hospital is up to speed on it because there is no research and no dedicated treatment on the nhs. They all follow NICE guidelines which aren’t very relevant to me and I think have failed me. I’m wondering about the Marsden. Is it worth trying to get in there if they’ll take me. It is a specialist cancer hospital. The U.K. is years behind some specialists in other countries. I can join those Facebook groups, that’s a good idea. I knew about them but had forgotten.

Definitely ask for a referral to the Marsden. It was one of two hospitals which I requested a second opinion from. They weren’t that helpful unfortunately ( I also have a rare cancer alongside metastic breast) but found Oxford much more useful. That said, a fresh set of eyes and ears might be what you need?