Meet the Other Phone. Protection built in.

Meet the Other Phone.
Protection built in.

Buy now

Please or to access all these features

General health

Mumsnet doesn't verify the qualifications of users. If you have medical concerns, please consult a healthcare professional.

Cancer support thread 91 - don’t borrow tomorrow’s worries

991 replies

LemonDrizzle10 · 27/10/2023 07:39

New thread

OP posts:
Thread gallery
22
Tilllly · 22/11/2023 22:32

@EachandEveryone 🤨
Shocking

nappybrained · 23/11/2023 04:04

@lucysmam sounds extraordinarily effing irritating. It would be fab to think it was an unfortunate ( being allowed) turn of phrase or just silly language but it doesn't seem to have been Bourne out as such for you.
@youdontneedtopoo good days and bad days I've found, and just trying to enjoy the good ones better. Sorry your here
And anyone else who is new. I blink for a day and miss 20 pages

Had my half way through chemo scan last week, and although cannot of course know for certain...I don't think my MF has changed and if it has not much, in fact if anything... So that s why I'm up... Worrying.. All sorts of issues with kids.. Too much. So have been trying to be positive, maybe docetaxel is just softening up the beast and breaking its substrate ties or something and EC will come in and melt everything away.
It's lack of control and uncertainty that make this rollercoaster completely unpalatable. I think I'm having an I effing hate it Thursday, or week...
Anyway we just keep plodding
Sending all love and peace

nappybrained · 23/11/2023 04:06

And to add insult to injury, almost finished knitting a jumper... And I'm sure the pattern is wrong...grrr haven't knitted in 20 years. Stoopid bloody thing

Tilllly · 23/11/2023 13:04

The MRI scan was not totally clear, there is a tiny dot that they can't identify so they will repeat this in a few weeks. It might be a brain tumour but most likely just an artefact of the scan

more concerning is i cannot have radiotherapy. The cancer is too advanced and spread for it to be safe, I was on the cusp but the tests last week show i am now well above safe limits - it would do too much damage to the healthy lung tissue and the heart

so plan C is a different type of chemo, alongside immunotherapy. Not as effective as radio and chemo, but may still control the cancer, and i can have this every 2 or 3 weeks for up to 2 years. He said 2 years would be a "very good outcome".

on the plus side, i won't have the radiation burns so i can still have Cmas dinner and i might not lose all my hair as its less aggressive

usual list of nasty side effects, plus the new one of my immune system attacking healthy organs instead of the tumour

I have had a ton of blood tests, and a B12 injection, and have a prescription for steroids and for folic acid - I did double check that one ;)

So not good news but some positives in there

tam23 · 23/11/2023 13:22

@tilly I’m so sorry your having to go through this. Sending you an unmumsnetty hug. Xx

dotty2 · 23/11/2023 13:55

Oh @Tilllly - I'm sorry to hear you can't have radio. It must be hard to know you are just on the wrong side of the 'cusp'. Sending strength.

Octopus45 · 23/11/2023 14:00

Sending lots of love @Tilly

nappybrained · 23/11/2023 14:00

@Tilllly really sorry re radio and that your having to go through this. Wishing you strength, and hanging as you are onto the glimmers.. But Gordon... pass the gin. Toughity mcfuckity tough

AllotmentTime · 23/11/2023 14:17

Quick question, anyone want a couple of hair wraps? The EC and Docetaxel were no match for the cold cap (fucking bastard cold cap I hate it so much, but it did work). My hair has thinned a bit but not noticeably- anyone reading this and deciding whether to go for a cold cap, it's not fun but good effects are definitely possible.

Pics below, free to anyone who's in need, PM me your address.

Cancer support thread 91 - don’t borrow tomorrow’s worries
Cancer support thread 91 - don’t borrow tomorrow’s worries
TopOfTheCliff · 23/11/2023 14:44

Sorry to hear of all the fear and frustration on the thread.
The Patience Inn is open for afternoon Tea and Cake and strong liquor is available as needed. The Rage Room next door is also open for a free session of crockery smashing and furniture destruction. Vent away in safety! You are among friends.

I have enjoyed a lovely bike ride in the autumn woods which made me happy. I am steering clear of cancer on social media and feeling a lot better as a result. Begone from my head evil thoughts! All will be well!

Love and peace to all xx
Top

Tilllly · 23/11/2023 17:00

I am hoping that this latest development means my husband will cave and let me get a golden retriever puppy

Oncology said I need to keep exercising and walking is ideal, so really, it's for a health benefit

What do you reckon my chances are?

dotty2 · 23/11/2023 17:41

I’d say that’s an utterly irrefutable argument!

weegiemum · 23/11/2023 18:05

@Tilllly sorry to hear your scan wasn't totally clear, fingers crossed for it being an artefact.

I had my lumpectomy this morning (I was second on the list so delighted with that). They had a bit of an issue finding a vein for the anaesthetic but the procedure was smooth and went exactly to plan. When I saw my surgeon first thing she said there was "zero chance" of a same day discharge, but I'm now sitting at home with a wee glass of wine! Her junior surgeon was really nice and decided to let me go, and I'm really glad!

Sending positivity for all of you going through difficult times with cancer at the moment. I've only been doing this for three months and we're still at "possible malignancy". This wee group has been so helpful. I get my results on 7th December. 2 weeks!

Tilllly · 23/11/2023 18:19

@weegiemum
To be fair, wine is made from grapes, and grapes are a fruit. So the wine is extremely healthy.

nappybrained · 23/11/2023 19:01

@Tilllly dog sounds just the ticket..I keep on having that thought too!
@weegiemum well done on getting home, and a little fruity drink what a lovely idea!

weegiemum · 23/11/2023 19:01

Thanks @Tilllly

I might have some chocolate too. Isn't it made from beans?

Octopus45 · 23/11/2023 20:06

@weegiemum so glad your op is over and that you got to come home the same day. What a relief.

@Tilllly agree that a Golden Retriever puppy would be amazing for you. When you get her or him, make sure you spam us with lots of lovely photos.

isaxx · 24/11/2023 15:23

I vote for the golden retriever puppy and for the photo spamming! I am a sucker for puppies, despite not bring able to get one (travel too much, when not stuck like I have been for the past 6 months..). I have not posted for a while, though I have been reading the thread. Sending strength, both physical and mental, to all who are struggling.

I have been on my first holiday sine this rollercoaster started. It was only a four day city break but was lovely and did not talk about cancer at all. Enjoyed the moment and other topics, went to see live music etc.

Back home to reality now, which continues in uncertainty. Thyroid nodule biopsy clarified very little as it came out as 'indeterminate'. Estimated 20% risk of malignancy. The ball has been thrown in my court as to what to do. Remove it or take the risk of waiting and seeing for 6 months. I have no idea and expect to be spending a few sleepless nights trying to decide.

On the lymphedema front, had ICG lymphography.

Again, unclear results. Could still be just transient swelling or ir could be lymphedema in deeper lymphatics or in areas they didn't test. Not every lymphatic channel was scanned. So, the can got kicked down the road until January. I may however qualify for the NHS trial of LVA surgery, provided the swelling persists at a certain level until January (which is bizarrely a disincentive to effectively manage my swelling, as I am right on the cusp of the qualifying measurements). Another dilemma right there.

@dotty how are things going for you on the lymphedema front? Useful to compare notes on this dreaded nuisance.

Nothing is ever clear or certain. I press on, drowning in statistics and decision-making under uncertainty. Going away for X-mas in any case as I cannot face any more crap if I can help it until January.

dotty2 · 24/11/2023 16:30

@isaxx So pleased to hear you enjoyed your city break, but sorry you are back in cancerland now. That's tough on the thyroid and the uncertainty.

What a perverse situation to be left actively wanting your lymphoedema to be 'bad enough'...that's rubbish. As for me, I'm no further along as my NHS appointment isn't until mid December (a two month wait from referral, which I guess isn't awful). I was supposed to have a private consultation at the start of November, but the clinic had to cancel because the surgeon had a family bereavement and that is now in early December. If I am suitable for ICG and pay to have it done privately, that could happen in January and then there's about a six - eight week for the LVA surgery. In the meantime, it doesn't seem to be getting any worse and I am trying just to do the exercises and not worry about it too much. I don't know what to think about paying privately. I am very fortunate in that I had an unexpected inheritance last year, and so I could afford it, but I really baulk at spending that much on myself. (If it was for one of my DCs I would do it without hesitation). I think it partly comes down to not knowing how long I'm going to live and whether I would really get value for money! If I only live another 10 years, which is quite likely, it's perhaps not worth it. But then a friend was telling me about someone they know who is in their 70s/80s and had BC years ago and developed lymphoedema. The cancer never came back but the lymphoedema is now really quite disabling for her, especially as she now has general old age mobility issues which are complicated by the pain and swelling which make it hard to use walking aids. (Sorry - you probably didn't want such an essay!)

isaxx · 24/11/2023 16:59

Hi @dotty. No problem about the essay! I am prone to 'war and peace' length messages.. Remember 'you can't take it with you' so value for money is somewhat less relevant after death..;) I'd say if you can afford it and if it will make your life better, it is worth it. I am sure your DCs would rather have a mother enjoying life and in good health than one that is struggling. That's how I am trying to think of it if it comes down to me having to pay for it myself. Life is expensive, but on balance it provides value for money compared to the alternative.. ;)

KentishMama · 24/11/2023 17:54

@Tilllly You need that puppy. And your DH needs to realise that saying No to a woman with cancer is just cruel.

I've already informed DH that I may require very significant retail therapy over the coming months, and he didn't dare complain...

(Last time I insisted that we sell our house and buy a crazy Victorian wreck that I fell in love with. I did agree that I won't make us move this time.)

KentishMama · 24/11/2023 18:01

Oh, I forgot to post today's annoyance: I am trying to get some genetic testing. There are a few known mutations that might be the cause of both the Breast and Bone Cancer - e.g. TP53. So I emailed the Clinical Nurse Specialist to ask if they'll test for this specific mutation as part of your post-op pathology stuff they're doing. Answer: "Our pathology team is first-class and often include a range of genetic tests."
Great. So is that a yes, or a no?

I absolutely hate it when I ask a specific answer and I get a noncommittal reply like that. I want to know.

Aaaarrrghh! (Thanks for opening the rage room @TopOfTheCliff )

Tilllly · 24/11/2023 18:01

@KentishMama
I bought myself a body shop advent calendar today
I literally thought, ah fuck it

KentishMama · 24/11/2023 18:03

@Tilllly That's skin care. Basically medical. I'm with you (and bought more expensive face cream than usual last week, albeit with an early Black Friday discount).

Tilllly · 24/11/2023 18:22

KentishMama · 24/11/2023 18:03

@Tilllly That's skin care. Basically medical. I'm with you (and bought more expensive face cream than usual last week, albeit with an early Black Friday discount).

🤣🤣🤣
#soulsister 😁