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

[LemonDrizzle10]

New thread

@MrsTaytodarling

I'm sorry to hear that, it's so stressful. I had to wait 3 weeks for my biopsy in 2022 and nearly lost it completely waiting all that time. I'd already waited almost a month for the initial "one-stop" on a 2ww. Fingers crossed you get yours asap. The NHS is truly struggling, even in cancer depts.

@tothelefttotheleft Can you see a different surgeon at your hospital to see how they are in comparison (not sure if the NHS allow that or not). How's the mastectomy discussion developing?

They said it will defo be November. Ireland I'm in so HSE. So frustrating

It really is extremely frustrating because without the results of the biopsy nothing can really progress. How much do you know so far?

Thank you Top!

Crikey these threads move quickly! Just dropped into say well done @TopOfTheCliff for finishing your latest course of treatment. I remember earlier in the year you writing you had one thousand and something tablets to go! You did it!!

I’ve just 3 more radiotherapy treatments to go (out of 19) and I too will be joining the Great Recovery. Hope everyone is doing well. Big hugs to anyone who needs it. X

I have my appointment for PET scan in ten days that will be about six weeks after radiotherapy. The lump is smaller I’m praying they will take it out or that the immunotherapy will be authorised. It just seems really unfair that everyone is getting it automatically and they won’t give it to me even though my oncologist is practically begging for it on compassionate grounds. I have an appointment on the 16th with him to see where we are.

I’ve had nearly a year off work and I’m thinking I should perhaps go back soon on a very long phased return just to build my dick leave up again.

@Whattodotomorrow

You're getting there! See you soon on the Great Recovery thread.

@EachandEveryone

Good news the lump is smaller. Is there any reason against surgery to remove it - have they spoken to you about the plan to do that or not? I can totally imagine you'd like it removed. I would unless the operation was very risky or something.

What immunotherapy is it the oncologist is struggling to get for you? It certainly sounds incredibly unfair it's given to others and not you when you also need it. Does the NHS have some sort of arbitrary protocol? I think it did about the immunotherapy @TopOfTheCliff would have liked, but she wasn't given it because she'd already started treatment when it came out, while people starting during her treatment were given it. I imagine that could have been Pembrolizumab, not sure though. That seems incredibly unfair to me.

Good luck on 16th. Let us know how it goes.

May i join in? I've recently had a ct scan with dye to check for a PE after covid. It has showed a 2cm lesion on my breast, and my d dimer is over 1100. I'm on anti tnf biologics so am higher risk. Just waiting to hear something from the hospital now. The a&e doctor said that if I don't hear back in 2 weeks that I am to attend a&e again. Not sure if that's usual practice?

That's surely not ok, why wouldn't they try immunotherapy, if your oncologist is for it?!

And curious about what 'dick' leave entails.... 😉😆

This thread moves fast! Welcome to the new joiners, sorry you find yourselves here.

Because they can’t find the primary which can only be in one of these places Anal, skin, vaginal or throat they know this by the biopsy. So no dept will take it on. It’s called cancer of unknown primary and it’s a nightmare, the outcomes are rubbish however I have the better one they think it’s hpv related although I’ve never been tested for that and my women’s bits were taken out along time ago.

dick leave is well behind me. Goodness I can actually remember the days of ringing in sick for that very reason😀😀😀 Lordy if they could see me now.

@SummerCycling sorry about the delay in getting back to you. On your edema question, my surgery was on 18th of June. I did not have radio for bc but had radio to chest and armpit 25 years ago for lymphoma so there was damage to my armpit area from back then. This is probably why removing just 4 lymphodes was enough to cause problems to my arm (terrible cording, nodules, seroma, and swelling). Anyway, I think the arm swelling started on and off immediately after surgery. Only started to get really concerned in August as I noticed increasing swelling in the evenings. Saw lymphedema nurse end of August and again at the end of September. The size difference between my arms was 10% late August and 12% late September. My swelling is in my dominant arm so not sure what the normal size difference would be. I now think I've got it down a bit with compression/massage and lots of elevation. Waiting for an appointment at the end of November for ICG lymphography to check the state of my lymphatic vessels and if I might be suitable for LVA surgery assuming if this is definitely lymphedema.
How is you edema going?

Thanks @Whattodotomorrow I can’t quite believe I got through 1120 tablets. I’m still a bit poisoned. My feet and hands are still blistered and energy is low but I’m happy.
The CancerLifelines SW retreat was utter bliss (apart from clanking plumbing) in a lovely Tudor country house with delicious veggie food and three psychotherapists. My main revelation was discovering that the angry lion locked in a cage inside my chest was actually a moth eaten tabby cat in need of food and love and nurture. My rage has dissipated beautifully. The folks I met were wonderful. All the others had stage 4 cancer so I was a bit of an anomaly. I was right to leave DH behind as he would been sourcing spanners and radiator keys to bleed the heating system and would not have sat still to meditate.

@SummerCycling you have a good memory about the pembrolizumab. I’m kind of glad I still have some shots in the locker for the future if I need them.

@MrsTaytodarling I’m sorry about the prolonged wait for you. It’s actually cruel.

@EachandEveryone fingers crossed you get both surgery and an immunotherapy. You need everything thrown at this.

Home and chilling now. Very Zen and Tidying can wait.
Top xx

Seeing GP tomorrow, ahead of respiratory nurse specialist on Wed

Paracetamol isn't managing the discomfort so well at the moment
I'm hoping they'll give me something that's just a bit stronger, without going nuclear

@Tilllly fingers crossed they can give you something better than paracetamol 🤞

I had my first day back at work today. Am knackered now, but happy 😊 There were moans and groans that my 1-1 didn't engage in activities, wouldn't sit for long, was loud & disruptive so I had feared that we'd gone right back to when he first started with us in nursery. Well, I don't know whether it was because he was with an unfamiliar person, or what tbh after 6months, but he's been spot on for me today.

We've mostly played in the dough but we've sat through stories, played with our reflection, and done some painting too. All at a nice, steady pace, with no major huffing and puffing.

I also learned that my sick leave starts again at full pay, should I need more time off. I was fretting a bit about only having 70 ish days half pay left but our office manager queried it & this was confirmed for her to pass on. @EachandEveryone would you be ok going back on a lengthy phased return? The worry about leave and money is bloody horrible.

@lucysmam sounds positive
Are you shattered?

@lucysmam that is good news, both that your 1-1 behaved and that the school will pay you if needed.

@Tilllly I hope your GP is kind tomorrow.

I just got a call from my surgeon to say the bone scan is clear of cancer and just shows arthritis which I know about. So the great recovery can begin once my blisters have settled! Hooray!

Hello all. I am falling apart today. Had an ultrasound of a nodule I found in my neck. It is in my thyroid. So far ok. At first the ultrasonographer said it was not suspicious. Then, later I received the report (released automatically at the Royal Marsden) and it is 'indeterminate' after all. Worst of all, it is 'taller than wide' which is almost guaranteed to be malignant from what I have read. I feel like the rug has been pulled from under my feet. It is big and on the same side as my breast cancer. I can't help but assume the worst. I will need to have it biopsied (along with a few other thyroid nodules that are smaller but also indeterminate). What made me burst out crying, apart from the report itself, was the fact that I had been momentarily reassured so went ahead and booked my first holiday in ages. It is in 2 weeks and there will be no cause for celebration. I don't see how this could turn out well at all. My partner is away so I fell apart in front of my 17 year old daughter. She shouldn't need to be supporting me like this but she hugged me for ages. I can't take this anymore. Just want to flick a switch and dissappear. Sorry to offload.

Really sorry @isaxx - being reassured and then not and still not knowing is crappy. Obviously there's still a chance that it is still nothing, or if it is something it may be easily treatable. What's the timescale for finding out more?

@SierraSapphire thanks for replying. Much appreciated. I have no idea what the timescale is. I have not been told anything. The only person I saw was the ultrasonographer, then saw the report. I was supposed to be finished with treatment! I want to scream. Now I feel like I will never know relief or happiness again. I can't cope with what this means for my DDs. I am wrecking the lives of all those I love. I am at rock bottom again. I had just dragged myself out of the abyss slowly over a few months. Now all those gains are gone. I don't see any light at the end of the tunnel.

@Tilllly it was a very positive morning, thank you! I'm absolutely worn out now & have just put some Halloween decs up with dd2 who is motormouth this evening 🙈 I'll be in bed early tonight, for sure 💤

@isaxx I have nothing useful to say to you but I'm so sorry this is where you are. Your post brought a tear to my eye.

Great news @TopOfTheCliff! Glad you can finally get on with the great recovery (again!).

@isaxx I’m so very sorry. Again, nothing useful to say but I’m so sorry.

Checking in to the new thread - hadn't realised the old one had been abandoned till I realised that the reason there were no replies to my post was because it was post #1000.

Thanks for your thoughts @Octopus45 and others. I've just been lurking/in denial for most of the last couple of weeks but "shit just got real" now as I had my PICC line installed today and the chemo kicks off at 9am tomorrow. Seen so many dire warnings about the effect of chemo on the ability to taste, enjoy and digest food that it almost feels like tonight's supper is some kind of "Last Meal Of The Condemned" - we are having curry.