Cancer support thread 90 - still the best threads no one wants to be on

[LemonDrizzle10]

Last one filled up quickly!

Hi @Unex I can only echo what others have already said this really is the most supportive thread. Rant,rage,cry or ask questions we're all here.
I was diagnosed with Fallopian/ovarian cancer in 2020. My big worry at my diagnosis was that I wouldn't get to see my son go to secondary school . Tonight we are going to the open evening for the school he will go to in September 24 so I m feeling positive that I will achieve that goal.
if you have any questions please feel free to ask.

@Unex hello and welcome! I can only repeat what everyone has said - it sucks. This stage is horrible as they generally find lots of things that are a little bit wrong with you that you wouldn't have known about otherwise but need to check out to rule out spread. I'm cervical, and so far various scans have thrown up hugely cystic ovaries, adenymosis (spelt wrong!) and several liver lesions, all of which were thankfully benign. Fingers crossed the bit on your kidney is nothing sinister. It's a lot to get your head round but just take it day by day.

@lucysmam those bracelets look fab!

Head is in a better place this morning, those post treatment scans will be what they will be and physically I feel great.

Glad to see you're feeling brighter @ClashCityRocker !

What lovely messages thank you
This time 2 weeks ago I was planning ride outs with various motorbike clubs, in an attempt to re-build my life after separation from STBXH in Feb 22
I was about to start a new full time job (DC now teens), and get back on my feet
Feeling very sorry for myself, but also REALLY pissed off with my financial: practical situation

Don't really feel equipped for this tbh

The ovarian cancer stats are terrifying
ATM I'm thinking/hoping kidney situation is a "found it by chance, leave it alone" thing

Hi @Unex its a great thread. I have Primary peritoneal cancer - which is treated the same as Ovarian. There are other people on the thread with Ovarian cancer. And there’s more than likely a Facebook group you can join (if you want to).

i met an older lady yesterday (at chemo) who was in her 5th year of having Ovarian cancer, some treatments worked better than others for her, and now she was on three weekly maintenance chemo- but was looking well, enjoying life and her cancer was being kept at bay. She said she was amazed at the number of treatments that had been open to her - after the initial standard treatment and when the cancer came back.

this is life changing- but there is hope - they can do more than they used to be able to do.
Information and statistics on Google are outdated, there’s plenty advice on eating well/ exercising and sleeping well. You are a trial of 1.

As others say - waiting is the worst. Once you’re properly in the system it seems to be pretty smooth, although it does dictate your life! Try and do things when you’re well to lift your spirits. I’ve been on paclitaxel and carboplatin (six treatments), side effects haven’t been too bad.

Lots of love xx

Welcome Unex. So sorry about the diagnosis, sending love. The other scans are scary but they do often just flag other things rather than cancer in the end. I had a possibly sinister thing on my CT in adrenals but in the end turned out benign.

Re financial support you could try for ESA and Macmillan are very useful with financial advice I have heard, if you are low savings there are more benefits and some people get pip as well, but that is linked to disability from cancer not cancer itself and it's very variable if people get or not, I never tried. But Macmillan can help with all that and tell you what's worth applying for. It can be slow to come through but they backdate.

That's lovely Lis 😍

And Unex still do those motorbike clubs, you will have gaps in treatment where days out are wonderful and you should take any chance you get and outdoors is perfect.

@Unex welcome to the nicest thread on Mumsnet, so sorry you find yourself here. I have stage 3c ovarian cancer, diagnosed December 2020. I've had 6 cycles of chemo with surgery after the fourth one and currently on a PARP inhibitor for maintenance. Everyone said to me that the waiting part is the worst and I didn't believe them, but it's true. Once you know what you're dealing with, you can eliminate the 'what ifs' and that helps enormously. The stats for OC are awful but these are on old data, there are so many more treatments that are available now. It's very likely your kidney issue is something you won't need to worry about - I had a lesion on my liver which showed on the initial CT and after a huge amount of faffing around, was diagnosed as a benign haemangioma. Feel free to ask anything and one of us will be able to help Xxx.

Thank you all

Welcome @Unex ! I was diagnosed with breast cancer in July and am now half way through chemo. Finding this thread really helped me come to terms with what I was going through in the early stages. Everyone has their own experiences annd challenges and is incredibly supportive.

@Silkiebunny
Do you think I'll be able to ride again?
Niche question I know!
Was thinking of selling it, but would only get £1200.
Not really enough to make a dent on my FUBAR finances
In other news STBXH is going away for a long weekend. Well deserved apparently. So that's nice

@Unex if it makes you happy do not sell it! I've pretty much carried on as normal (for me!) since May when I was diagnosed. You may find you're actually ok to carry on.

Unex I hope you will still be able to ride it, I had breast cancer so not an expert on ovarian cancer treatment but I do swimming and people often say you can't swim in some treatments but some women do. I would ask your team about it but definitely don't sell a bike you love yet. I find also that people, even people you've never met, are often very willing to help to make these things possible. I think the community around these things can be very helpful for support too. Sometimes with the swimmers you see people just entering the water with their group but even that has benefits.

I found this lady who seems to have biked with it.

https://www.tealonwheels.org/

@lucysmam the lush bar has rosemary in it which according to the look good, feel better hair course I went on, helps to promote hair growth. Not sure it really did but was nice to use. My scalp was/is a problem and my dandruff has been awful but the little pot of UG ‘scalp scrub’ has been brilliant. I slap it on once a week and it does its job! Was £9.99 from Boots I think. I’m usually not one for hair products but this is worth the money!

@Unex - definitely don’t sell your bike yet. My friend had ovarian cancer 5 years ago, hers was low grade and surgery was only option (low grade isn’t responsive to chemo). She seems to be cured, and has been doing spin classes at our gym for at least 4 years. Don’t give up the things you love too quickly.

I hope you get helpful financial advice - you don’t need extra worries. X

@Unex welcome to our lovely thread nobody wants to join.
Don’t make any big decisions till you know what’s happening next. There will be life after treatment and your bike may be an important part of that.
After I got cancer no 1 (right sided BC) I bought a bigger sailing boat so I could go adventuring. 18 months later I sailed her singlehanded round the UK while my husband cycled and we raised £12000 for Macmillan. It did me a world of good.

Feeling very tired this week. I am putting too much into my days. Need more rest on chemo. And feet up! Back to bed I think.

Feels like ive entered the twilight zone
I've pestered GP every day about referral to gynaecologist
Now had a letter telling me I've not booked an appointment, and asking for a key code
Carnt book appointment with one
I have 0 idea where this code may be located!
Feels like dungeons and dragons 🐉 rather than cancer pathway 🙄

@Silkiebunny
Wow reading that is lovely
I'd be happy with a 30 minute bumble to local biker cafe tbh..

Yes it's lovely Unex well apart from the cancer but good for her she can still do her dreams. I think during treatment 30 mins when you can is more realistic but even that can really help mentally. Then afterwards you can do your round the world bike tour. 😉Maybe you can race Top in her boat. I would offer to race you both swimming but don't think would get very far. 😂

Hi this is the thread I didn’t think I’d be joining, but who does?
7 weeks ago I found out I had a tumour on my colon. I’d been sick for weeks up till then. I’m beginning to think Iv had this for a few years due to unexplained vomiting.
well good news it was all removed, lymph nodes all fine. Operation was a total success. Some cells left so they have offered me some chemo. They said I could refuse the treatment, but because I’m still young, plus a precaution. On my first week of treatment and feeling tired.
I think my mental health has taken a tumble as I don’t even want to go outside, in case I bump into anyone I know. I feel like I’m grieving as my life will never be the same. I don’t want to feel like this. Just want to go back to normal, work, nice feelings. Sorry for the moan .

@Unex sorry to hear re diagnosis and now the wait,c which everyone will say is awful
Today's care package involved some aloe Vera gel from Amazon 1000mls.. But oh my very scalp soo thing , irritation had just started again

Anyone had hi fever issues with filgrastim injections?

@Slitheringheights I’m so glad that you have some good news - re the op - and the fact there’s hope of cure with chemo.
This time is one of adjustment and it is a massive shock, plus you’ve been through major surgery and everyone takes their health for granted - until suddenly they can’t.

I hope for you that this is a blip in your life and you regain your normal life in time. I have a friend who had bowel cancer way way back - it could be over thirty years now. I’m sure she said she’d even had liver mets. Other than annual colonoscopy her life is entirely normal.

Take care, be kind to yourself. Xx

RedRosesPinkLilies
thank you for your kind words. Yes we all take our health for granted. I think it’s the unknown. I’m so crabit tonight and teary. I need to snap out of it. I don’t know if it’s the chemo that’s making me tired and unbearable.
I had my gallbladder out 2 weeks before they found the tumour. The doctors thought it was the gallbladder causing my sickness. Then major colon surgery to remove tumour. xx

Welcome @Slitheringheights to the thread nobody wants to be on. You have been through a punishing time and must be mentally and physically exhausted. To come to terms with what has happened take time to process. It’s a grieving time and also a time of rage for some of us. How dare Cancer mess up my lovely life like this! Be kind to yourself and take help when it’s offered. And rant away on here - we get it!

I was a saintly DIL this morning, taking MIL to the dentist then for coffee and yummy cakes afterwards. Ann Widdicombe was in the cafe which was a surprise. She is very tiny but well endowed and looking quite elderly and was alone. Once she left everybody was talking about her. What a strange life she must lead. I even felt sorry for her.
Afterwards I went back to bed and slept for four hours. No energy this week!

@Slitheringheights my mood definitely goes down with chemo, our bodies feel crap and I think it affects our emotions. Try to not dwell on it and just think of it as a phase. You seem to have genuine reason for optimism and unfortunately will learn a lot through this experience