Cancer Support Thread 85 - Hoping for a positive 2023

[AGreatUsername]

Starting a new thread as the old one is almost full.

Welcome one and all, this is a thread for those with cancer and those who are awaiting tests for cancer. We offer support, a place to rant/vent/cry and ask questions without judgement. As always maybe we can do a quick who’s who at the start of this thread for newbies.

Heres hoping for a positive 2023 for us all.

@TopOfTheCliff - your giving lots of hope. I was of the impression that chemo sucked all the energy away, but your out cycling, even if your wobbly, your still on it. I was wondering whether it worth it or not to keep my PT sessions but I think I will now.

Ive not had any chemo appointments yet, nor have I met my Onco. Ive completed the chemo suitability test early Dec and that’s it. Lots of triple + have chemo or meds prior to operation. Diagnosis late Sep, Mastectomy done, then nipple removed to ensure clear margins in Dec. Can’t really avoid chemo but find it really strange that it’s taking so long when apparently it’s a must. They upped my grade from 2 to 3 after the biopsy but the stage remained the same. I can’t help but worry that a 3 poss 4 month wait from diagnosis until chemo start is leaving it late to start. Not that I want to start but I wish I’d started months ago.

@incognitodorrito - yes, that delay must be frustrating. Re the exercise, I am mid chemo and am finding exercise to be more important to me than it was before. Most days I just walk, but I really feel the urge to get outside. I've also done some gentle runs - I went out this morning just as the sun was coming up. I have a lake nearby I run round and the light was really magical. @TopOfTheCliff - sorry to hear about your bike calamity, and I think you should focus on your core, not your hair. At least there's something you can do about that! The hair is completely out of our hands...

@Zorgothslugofdoom - thank you for that, but definitely not provided at my hospital. I do find it frustrating how much variation there is across the NHS with that kind of thing.

I am enjoying a 0% Leffe blonde as I type. I think it's new, and really not bad - I have all but given up drinking and am enjoying the fact that non-alcoholic beer has got so much better in recent years. I also like a Crodino, which is like a non-alcoholic Aperol spritz. Best wishes to everyone.

3 month post treatment MRI tomorrow. Shitting a brick and symptom spotting but I guess this is my life now. I am not seeing the consultant until end of Feb though.

@JlL2013 sending you very best wishes for tomorrow.

@Notagainst thank you

@JlL2013 good luck today! Everything crossed all is okay. Scanxiety is awful.

Back to work for me today. I work in an office role so feel very sedentary and like my good exercise intentions go out the window. I do have an exercise bike but really need to find some core exercises that I can do at home that don’t impact on my already-weak back.

@AGreatUsername thank you. Hope the return to work goes okay.

@JlL2013 thinking of you for your scan today, the scanxiety is just awful. I have a CT next week and over Christmas could push it away but it's right at the front of my mind now.

Fantasea fingers crossed for you too.

@Fantasea thank you and fingers crossed for you too. Feels very much like a return to reality today.

@AGreatUsername and @JlL2013 thank you both Xxx.

I lost this thread for a while.
I'm peed off today, one of the side effects when I was on Imraldi was shingles. Not had it for almost two years. I finished radiotherapy 3 weeks ago and feck is my arse cheek on fire, so I will be adding acyclovir to the never ending list tomorrow!

I hope all those having scans are doing okay. Remember Knowledge is Power!

Today I got a call about a date for surgery. I knew if I booked a Look Good Feel Better session it would class with the op date and it did! It is also the day my DD is getting married on the other side of the world. What an auspicious day!
Slightly alarmingly the nice lady said "Of course you are coming in tomorrow for the pre-op talk with the BC nurses aren't you?" Am I? First I've heard about this. Ah well, I didn't have anything important planned.

I have been doing well on my rehab this week. I've only eaten two cakes since Monday, and I have been to two exercise classes which I enjoyed although I wish the teacher wouldn't draw attention to me. I just want to hide at the back with my head covered. She means well!
I just put the wall calendar for 2023 up and have been adding things to it. What fun things can I put on there? Give me inspiration people. I've lost my confidence in planning ahead. Shall I risk a trip to Brittany on my bike? I haven't been out of the UK since 2019 so it's about time I took the plunge. I seem to have become a timid little homebody when I am usually a bold adventurer. I hate what cancer does to us!

Sending strength and courage to all
Top x

@Gilead sorry about the shingles. Does it make you feel exhausted as well as the rash? There is no end to all this is there?
Top

Thank you @TopOfTheCliff . Yes, I didn’t want to get up today!

My oncologist has transferred me over to the skin specialist. It’s the last place to tick off where it’s it’s come from but he said regardless the treatment will be the same. Does this make sense to anyone?

three months of platinum based chemo plus immunotherapy chemo every three weeks? Please feel free to tell me how to prepare and what to expect!

my appt is 1115 in the morning from that specialist appt when does the chemo start roughly? Does anyone know the royal free?

Im having terrible balance problems, got a private ENT appointment but wonder if this is a late effect of chemotherapy in which case its probably permanent.Im possibly starting another load of chemo in a couple of months so really worried. I live alone and am totally dependant on looking after myself. and dog, very down at the mo. Sorry another depressing post

Theresonlyoneofme, I’m sorry you’re feeling so down and that you’re having to walk this road alone. I wish there was something we could do to help you in real terms.

Can I ask what makes you think you may be stating chemotherapy again? Has anyone told you this or do you still suspect your balance problems could be brain Mets?

Do you think you could be depressed and needing a bit of a helping hand from your GP. Can you ask for a referral to social services so that if you do need chemotherapy again you might get a bit of help with care. Even a social worker. I can recall my granny had one when she lived alone with a major health concern.

You’re in my thoughts.

@thereisonlyoneofme oh dear, you sound so low and I too wish I could do something practical to help. Just a thought, have you been investigated for labyrinthitis or similar infection? A friend of mine developed it and it didn't give her any pain or make her feel unwell, just the awful balance problems you describe and it went on for weeks on end. I'm hoping the ENT consultant will be able to reassure you.

Cariadz and Fantasea Thanks for your replies. I am sinking into depression I think.Its bad enough facing more chemo with out this issue as well. Best not to take any notice of me, its only because Ive no one to moan to. Ive even been thinking about rehoming my dog, so I know Ive sunk lower than usual.
Got ENT appointment with private bod next week, and Ill probably be able to
request a scan.Im just thankful I can afford to do it though really it does go against the grain; I hope it is labrynthitis, googling is a bad idea comes up with all sorts of diagnoses., but if you cant get to see a GP its the only answer. Now isnt the best time to need the NHS is it.

Hi everyone. A bit of an odd question (as I lie here feeling rough after my fourth- and last - EC yesterday. On to paclitaxel next which I’m really anxious about)

Did anyone else find they wanted to look completely different after going through all this, or is it just me? I’ve always been a bit “different”, grew out of the goth stage eventually 😂 but still had brightly coloured pink/purple/sunset hair, loved bright clothes and patterns, irregular choice shoes, all that kind of stuff. Since this happened I couldn’t bear to look at any of it and I’ve sold literally everything I own besides jeans, trainers, my black DMs and oversized plain jumpers on Vinted. I can’t dye my rapidly thinning hair of course but I don’t want to anyway. I feel like that person has gone forever. I don’t recognise her in photos.

I did wonder if you were depressed. And of course we’ll take notice of you. Just off load as much as you want.

And your wee doggie - I think you’re jumping the gun on that and your catastrophising because you’re feeling so low emotionally. Try and hold off for now because I’m pretty sure even if you were laid low for a while you’d still manage to give your wee pal excellent care.

Go and see your GP and tell them you’re feeling very low and you think you’re depressed and if they offer medication please take the help. You’ll feel better within weeks and whilst it won’t make the horrible things disappear they’ll certainly help you deal with everything differently. You’re going round in a viscous circle right now and you need help breaking it.

Have you given anymore thought to the dog charity people mentioned a few weeks back. The one where they take your dog for a walk. And I’m trying to think of the one my friends are volunteers for. They babysit a persons pet when the owner is in hospital or unwell.

And would you consider a social worker?

I well understand how you feel about private medicine when there is the NHS. It’s the same where I live also. I’m having my knee done privately otherwise it would be a two year wait but my son in law the Dr told that pre-Covid it would have been 3 weeks.

Do you like playing online word games? I’d be happy to join you for a wee bit of distraction if that would help.

Don’t forget we’re always here for each other. And you’re not being a nuisance.

@thereisonlyoneofme - can you find someone to talk to IRL? It sounds like you could do with someone to help work things through. I'm sorry you're feeling so low (I have mentioned this before, and don't want to sound like a broken record, but you can get free counselling via Macmillan if you meet their criteria.)

@WorryMcGee - a bit, but the opposite way for me. My dress sense has always been fairly classic and plain, with a bit of Scandinavian Architect thrown in. I wear glasses and go for very neutral styles. I am imagining my hair is going to grow back grey (was salt and pepper before) and I am thinking of going for a short funky style and some much more out-there glasses. I have also been wearing a lot more dresses and jewellery, as I feel it sort of compensates for the baldness. And I've been wearing make up, which I never used to do - partly thanks to getting tips and freebies on a Look Good Feel Better workshop. I guess the cancer experience can be an opportunity for a re-set in all sorts of ways - but we need to make sure it's for positive reasons, not giving up, if you see what I mean?

@dotty2 I do know what you mean, and I think some of my friends are worried that this isn’t positive. I guess I’ve been so brightly coloured for years that I probably look strange to them with no make up on, jeans and a baggy jumper and they’re worried about it. DH was a bit concerned about me selling all my stuff but I found it quite cathartic. I’m still not sure whether it’s a good thing. Yours sounds like it definitely is a good thing 🙂