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.

Aww @mowly77 looks like the best medicine … bubbles & bfg ! The skyline view from that room must be incredible ❤️

Ps thank you for @Toughie for the Anna Bandana recommendation - just ordered a few.

@mowly77 enjoy every moment.

@mowly77 it looks fabulous and I hope you and your lovely DD have the best time together ❤️

I posted here a while ago having seen GP and had a blood test showing CA125.
I'd had a complete hysterectomy 4 years ago.
Anyway,scans and more blood tests etc etc and eventually told that the lymph nodes in my abdomen and chest are cancerous.
Went to cancer hospital today and was told they are treating it as CUP as there is no primary.
It's stage 4.
Due to start chemotherapy Paclitaxel & Carboplatin, next week.
Ive been told that it is terminal. I am expected to last a year, providing I respond well to the chemo.
I feel a bit of discomfort in the area but apart from that, I feel quite well. I was expecting the DR to say I would be fine after a course of chemo.

Has anyone here had any experience of CUP?
I don't even have any experience of cancer, let alone all the terminology.
Thanks.

@mowly77looks like a fab evening, I’m raising a virtual glass to many many many more!

Thank you @TopOfTheCliff and @Fantasea for the tips. my referral did indeed go awry but managed to locate it now and it is now with the department for triage.

Feeling much less positive today, as I know that the referral was made quite urgently which is probably not a good sign. Coupled with how quickly the lump is growing and my general malaise I am back to thinking the worst.

i also don’t really want to socialise with other mums as I am feeling really jealous of them not having to worry about such heavy what ifs.

@RoseOud I'm so sorry to read your update and am thinking of you. I don't have any experience of CUP but had the same chemo that you're having for my ovarian cancer so I could help answer any questions you might have.

@Anxiouslikenoneother I'm pleased your referral has been located, what a worry for you. I think the NICE guidelines say that anyone where cancer could be a possibility is on the 2 week path, and often these patients are found to not have cancer but are then referred on to another department. It's hard not to worry though and the waiting whilst not knowing is just torture. A lot of us contributed to a discussion on the previous thread where we spoke about being jealous of those who don't have to live with the fear of Cancerland, I think it's normal and I still feel like this at times now.

Also sorry to read your update @RoseOud I’m also stage IV so know the headfuck of a terminal diagnosis, but not CUP, I’m metastatic breast cancer & currently on targeted therapy with no time frame. Your timeframe is really tough to get your head around. Sending you every support & sympathy. I also had Paclitaxel initially so can answer any questions you may have - as can lots of us here on this thread — & many in the combination you are going to have too, with carboplatin.

Currently on train home after lovely morning swimming at hotel, breakfast buffet & then St James’ Park with my brother who is visiting from the US.

Treasure every moment indeed.

Thinking of you @RoseOud - hopefully someone will come along with some relevant experience soon who can help. We are all here to support you.

@Anxiouslikenoneother as @Fantasea says - the urgent referral is just standard practice, try not to read too much into it (easier said than done I know!). I hope you now get some answers pronto!

Had a long wait in the waiting room today for my latest results - by the time I got to see the consultant I was a complete wreck, poor BCN having to deal with me. Results themselves were actually ok this time (lymph node biopsy and CT scan clear) - but expecting the worst is def a strategy I will adopt going forward.

Thanks all. Much appreciated.
☺️

RoseOud So sorry to hear your update and hope you can defy those odds. I don't have CUP, think Each may have that but did have Pax for 12 weeklies. I got myself a coolbox from a camping shop and used to take ice lollies and frozen chemo gloves and socks from Amazon for feet and hands to help with neuropathy. And extra fluoride toothpaste from dentist helped teeth. Almost no nausea so did not need anti sickness much.

Glad you saw your DB Mowly

Roseoud. Yes I’m on that journey with CUP. I’m on the chemo I’ve finished my first round and start the next lot this Friday. I’ve been ok with it just lost my hair this week. Well it’s falling out very quickly. I don’t know what to say as I think I’m ignoring it. My doctor has been optimistic that the chemo will work so I’m just going with that for now. Have you had all your scans? Are you in London? I feel completely fine it’s such a headfuck the whole thing. How can they not find the primary? I’m almost embarrassed when people ask.

@EdwardTheBlueEngine I am so glad your results were good. Take a breath and try to relax after all that angst waiting to hear. It is exhausting being terrified!
@RoseOud what a bombshell you have had delivered. I can’t imagine the doctors being so dogmatic when there are so many unknowns. Let’s hope they are wrong but meanwhile take every bit of help offered getting your head round it all.

Go @mowly77 I am glad you have had a treat. You deserve a bit of spoiling x

I am struggling this week. I think it is partly physical, still battling a wound infection and tired after chemotherapy, and partly mental. I thought I was nearly through treatment and now I probably have to find some strength for another round of chemotherapy I don’t want. I was raging but that is subsiding and I am just feeling flat and miserable. It’s a very rare thing for bouncy Tiggerish Top to feel down and probably won’t last long. I shall wallow for a few days and let my BCN talk me up when I see her on Friday. The skanky wound is stopping me exercising and I am feeling unfit and fat. I had lunch with a good friend who means well but was trying to persuade me I am now an old lady and should lower my expectations and behave like one. Perhaps she is right and my days of piracy and looting are behind me.

On the plus side lovely DH is taking me out for a romantic meal as we missed our anniversary due to Covid. He is very good to me and I appreciate him.

Ah, Im glad that you were able to go do something so nice and fun with your daughter/family there @mowly77 . Glad the current treatment is treating you so well!

Just back from the Netherlands on a long weekend and may have over done it on the hip, but it will get better in the next day or two as long as I rest. The new physio set is just kicking my ass so I may downgrade a few exercises for a bit otherwise I wont be able to walk anywhere!

talking of Amsterdam my friend has offered to source me some edibles but they arent really my thing. I did it once as a student and I was tripping for days I hated it. I do wish we lived in California though and could just walk into the shop and buy some gummies.

Im down today too. I think its the hair loss. I will have to get it shaved off. I met a work colleague and they had sent £150 in a card so that set me off in the pub. It was a lunch in a country pub and it was a beautiful day and I am counting my blessings that I got through the first cycle with no real side affects. I start the next lot on Friday.

Oh, my mother will go mad so I mustnt tell her Ive paid £1000 to go proper glamping at Glasto this year. Sod it!

Good morning everyone, I just wanted to pop in to wish everyone well and to say thank you for the generous and loving support I’ve had over the last 27 months.

I didn’t cope at all well with my stage 1A MOC and the day the whole thing started was the straw that broke this camels back. I was under the care of my sons psychiatrist team by evening after my children called them in.

My treatment for the cancer didn’t involve chemotherapy. It was a staging laparotomy where I as filleted like the proverbial fish and when I left hospital I left a load of me behind including an almost 6 kg cyst. I was also put on 6 monthly check ups for two years then annually thereafter.

Its been nerve wracking but doable thanks to the wonderful women on this thread and now my chance of recurrence has gone from 60 to 10% and I’m now on annual check ups for 3 years I think it’s time to try and stop looking behind me.

My mental health is really good. There’s been a lot of changes in my life along the way and whilst I’ll never get over the breakdown of my then 35 year marriage 10 years ago life is very good, I made it good, and I’m blessed with my 5 children, 8 grandchildren and large extended family. And of course I have to make special mention my now 31 year old 6 foot 3 inch version of Tigger who despite the most horrendous of disabilities never fails to make my heart burst from the joy of him.

This really is just a thank you to everyone for everything they’ve been to me. I shall keep an eye on the thread to see how you’re all doing but I’ll no longer post.

Theresonlyoneofme, I really do wish I had lived closer to you.

Mowly, I’m glad you had a great time with your wee girl and I hope you had more of what was in that glass.

Silkie, will keep you and your darling boy in my thoughts.

Thank you everyone ❤️

Thank you so much DesertRose Glad things are better than they were. Been so lovely to have you for DS as well. Saw him last night and found his hospital therapy elephant down the toilet, chocolate milk thrown all over his room, food wrappers everywhere and him completely covered thumping the bed and 5 months in they still don't know what he has and 5 hospitals involved or have been involved now. Just had call this morning that in the night he started attacking staff and poured water over their Karaoke machine so they put him in seclusion. He's on forced meds being held down by 4 staff twice a day. Not sure meds are improving things as he was very gentle pre admission. So it was Valentine's Day evening on psych ward then DH wanted to find a restaurant and they were all full so it was KFC drive through and I got the wrong order given to me. Ward review in 30 mins. Good thing is it makes me forget about cancer.

@DesertRose64 I am so pleased things are settling down for you. Enjoy your new life!

@Silkierabbit that all sounds horrendous. Poor DS doesn’t deserve such a painful and frightening time, and nor do you. I hope they can find a way to help him without heavy chemicals. He is going to be so traumatised by this time in his life, and so are you. I have a relative who has manic episodes so I understand some of what you are going through. Sending hugs x

@EachandEveryone good for you! Mother doesn’t need to know about the cost. You deserve a treat.

I’m feeling better after a gentle puppy walk with DD today. She reckons I am just miffed because I didn’t get top marks in the cancer exam. She knows me well! And the puppy is good therapy too.

Just saying hi, and hope everyone is coping as best able. 💐

Thinking of you @RoseOud

I hope you have some nice plans and some really happy days coming up in the next weeks

💐

woke up with all my bones hurting, but paracetamol, hot water bottles and chocolate seem to have helped

Chemo number 7 of 8 today…just dropped DD at nursery. I won’t see her later as there was a screwup and the registrar didn’t authorise my chemo for reasons best known to himself. I called yesterday as I thought it was weird I’d not heard anything and they found out it hadn’t been done. Which means it was ordered late, so it’s arriving late, and I’m going to be there until way past her bedtime ☹️ at least it got sorted and I didn’t show up this morning as normal only to be told there’s no drugs for me I guess!

Morning everyone. I had my last chemo yesterday, which should be a cause for celebration, but I feel oddly flat. I think it's partly because I know there's still such a mountain left to climb - RT, plus long term hormone and targeted treatment. I don't have dates for any of that, and the chemo nurses were surprised I hadn't even had a planning appointment through for the RT. I am a bit fed up about that and always feel much better when I have a plan.

Sorry to hear of people having such a tough time - especially @RoseOud with your difficult news and @Silkierabbit with all the anxiety about your son.

@EachandEveryone - I think you are absolutely right to plan a splurge. @mowly77 - you definitely demonstrate how important it is to have those moments when life feels good. Cancer has certainly changed my perspective - my DDs were desperate to go to see Harry Styles but the tour dates clash with their GCSEs and A-levels and the timetable hadn't been confirmed at the time the tickets went on sale so there was a possibility they might have an exam the day after. Old me would have said 'no way' but I had just been diagnosed and I said they could go for it - life is short. (As it happens, neither of them does have an exam, so I feel I have got away with my recklessness!)

Is this a thing then? I also had bloods done yesterday and had a telephone appointment with my consultant which never happened. I’m supposed to start my next cycle tomorrow friending on bloods. The CN never answers Amber bleep so I’m up in the air too. Do I just turn up at the booked time?

how awful, I am so sorry this happened, its such a hard day anyway, and you really dont need this sort of thing on top