Cancer Support Thread 92 - Christmas Happy Hour at the Patience Inn 7pm tonight 🎄

[LemonDrizzle10]

Old thread nearly full!

Just thought I'd post as feeling sorry for myself today.

Got pleural effusion, which is making me breathless and cough a lot. Oncology want me to " crack" on with ribociclib and letrozole, as I've only just started targeted therapy.

Im fatigued, hormone depleted and my bones ache.

Been off work 3.5 months ( hysterectomy due to a different cancer) and am due back beginning of March. Work have been fine, but now I'm thinking, I don't actually WANT to return. Im a TA in a SEN school and it's busy. I need something slower paced.
I've got two months full pay left, then
I'm down to half pay for six months.

Decisions decisions.

Can't afford to not work.
Wouldn't qualify for PIP I don't think.
Not at ESA point yet.
Can't take early retirement ( would get sweet nothing).

Maybe I should take the remaining two months off, to find something else work wise ( and that daunts me!)

@Enigma52 - that sounds tough. In your position, I would try to think about what it is that would make a new role better for you, then really work your networks and contacts. Think of everyone you know who does work you might possibly be interested in and ask them if you can have a chat about what it's really like in practice, whether a move into their field is feasible. Most people are delighted to talk about themselves like that, and it could even lead to an opportunity - but it's less awkward as you're not asking for that directly.

@dotty2 yes good thinking.
I really do need a to sort my life out. I was thinking about retraining or moving into a different field, way before all this rubbish hit the fan.

Now, I feel deflated of energy and just want to feel well. I had 18 months of pure unadulterated hell, prior to the sarcoma being diagnosed. When I was fast tracked for hysterectomy, I was so happy! But then comes metastatic breast cancer and I'm back on the hamster wheel!

And for some reason, I feel bitter! Bitter that this rubbish should come back and try to turn my life upside down again.

@Icanneverthinkofausername what I learned from my experience was that you don’t actually need to be brave or strong. As long as you actually turn up in the right place the nurses will look after you, let you cry and talk you through it all. People are kind! Also don’t look ahead too far. Just deal with today, hour by hour. Time will pass.

@Enigma52 it’s not surprising you are bitter. It is deeply unfair and rage is understandable. Hugs

I am trucking along in a weird world of recovery and funeral planning for MIL.
I am in no pain and feeling better every day. Thankfully.

@Icanneverthinkofausername

If you are cold capping takes blankets with you. Make sure the staff know you are cold capping and how long you should be on it after chemo. I was taken off it after 30 mins on my first appointment and it should have been 90 mins. I queried it but they maintained it was 30 mins!

I'm doing EC and it gives me a flush feeling down below and a taste in my mouth.

I've only done two sessions so far so I'm not much help.

oncology appt was mixed results

There is no evidence of bone or liver cancer, so it’s not spread which is good

However, the CT scan is what he calls a complicated scan and falls into a grey area

Some aspects look better, the top left lung has re-expanded and the base of the left lung looks better as well.

But there are definite new lymph node involvement in both sides, especially on the right side, and this is a definite new change since the last scan

However, in a small number of patients having immunotherapy, there is something called “pseudo progression” - so whilst the CT scan shows the lymph nodes to be more involved which suggests more cancer, it can just be an inflammatory reaction to the immunotherapy

So the plan is to do another CT scan in three weeks -
If the lymph nodes are the same or similar, then I will stay on the Chemotherapy and immunotherapy plan that I am on now. If there is progression with the lymph nodes, either more inflammation or more lymph nodes involved, then we have to change treatment.

That treatment is what they call second line treatment, but is like the last line of defence as far as I understand it

A tablet called sotorasib

He wants to keep me on the chemo as long as possible, because once it’s been stopped, they can’t restart it
But if more lymph nodes are involved, then the chemo isn’t working and will be stopped

They’ve doubled the 2 morphine meds to try and combat the chest pain I have, he describes it as mediastinal pain, which is in keeping with inflamed lymph nodes

@Tilllly that sounds like there is room for a muted cheer. No spread! And possible immune response from lymph nodes. Could be good news. Let’s hope the pain responds.

@Icanneverthinkofausername wear something you're comfy sitting about in! & can manage to pull up/down for the loo one handed, if possible. I wore my jeans no probs but was very conscious of the cannula.

Take your copy of your consent form, just in case they don't have it yet. I sat for hours waiting for a response from someone at Weston Park to send a copy over.

Water bottle or whatever drink in case you don't fancy a brew/coffee. I think mine had hot chocolate too but not 100% sure.

Don't panic when you're still wide awake at 4am on Saturday - that's the steroids. I was always wide awake & starving at some ungodly hour on the Saturday morning.

@Enigma52 I hear you! It's a fucking shit show. I think you might qualify for pip though - I did, which surprised me.

@Tilllly I'll join @TopOfTheCliff in a small cheer too! How's Daisy?

I had a call from my GP surgery today...no idea what for, I was out for lunch with one of my best friends & her ds, who's having a bit of a hard time. I'll call back tomorrow. Best not be a "we want to do a medication review". No. That was done by a specialist a month ago. Also best not be a random "just a catch up" call. I do not want random calls!!

Off to Ikea tomorrow...do not know what I need yet...Ikea will tell me when I get there (unless you lot do 🤣).

Just about to check in with dd1's friend whose bro has been diagnosed with lymphoma this week 😥 He's only 13. They're having a properly rough time of it lately.

@lucysmam I quite enjoy the random call from my GP to check I’m still here. She expresses such astonishment that I am cheerful and happy and not weeping and wailing. I like being told I am amazing and reminded that what I have been through would break a lesser mortal.

IKEA has great house plants. The Monstera I bought a couple of years ago for £2.99 is now six foot across.

Hey all, I'm due to start radiotherapy/chemo on Monday for cervical cancer. I said hello when first diagnosed (end of November) but have been in a bit of a shit show since then (scan delays/scans inconclusive/scans repeated/candidate for surgery/not candidate for surgery/referred to one hospital/referred to another hospital blah blah blah and only just starting treatment now.
@JlL2013 how did you feel through your treatment? How much were you able to do? Were you on the intensive 5 weeks of daily treatment then brachytherapy on 6th week? I've got a fairly long drive to the hospital and not sure how much i'll be able to do myself or how much help to call in. I know everyone is different but would be great to hear your perspective.

@Yorkshiregold I didn't have the same cancer/ treatment as you but did have 15 lots of radiotherapy to my breast. I had about a 30-40 minute drive and intended to drive myself but actually got a bit fed up being on my own and so accepted the offers from friends of them driving me. And it was so nice to sit in the car and chat and was a really good way to catch up with my friends. So even if the treatment means you are physically fine to drive, you might want to consider offers of lifts for other reasons.

@lucysmam do you reckon I should have a stab at PIP? The BCN said definitely go for it and they have a benefits advisor at Maggies who could help. The macmillan advisor on the other hand, said unlikely as I can do everything ( including personal care ) for myself.

Who knows !!

I bought the boots! They are a thing of beauty & I am in lurve 😍 Box is bloody huge mind...nearly took out myself and a few other people getting the bus from Meadowhall with it 🤣

@Enigma52 it's worth an ask! I got Macmillan to do mine on my behalf - maybe that helped. I'm still working & doing everything for myself too!

Oh yes, as well as the boots. I meant to ask; hot flushes...anything any of you recommend to combat the epic heat? I've played clothing-hokey-cokey today while we've been out 🙄

@TopOfTheCliff I talked myself out of the dinky orchid plant! Might actually pick one up next time; I didn't expect them to be great quality wise.

@lucysmam Those boots! So jealous! And very happy for you, they're fab. For the hot flushes, do try to figure what sets then off. For me, it's (sadly) alcohol. Even the smallest glass of celebratory prosecco. So I've developed a taste for fancy mocktails now. I've also heard sugar, spicy food and caffeine mentioned as culprits, but luckily, I'm fine with all of those!

@Tilllly A low-key celebration is warranted after your oncology appointment. It sounds totally logical that your lymph nodes might be reactive because of the immunotherapy. Mine respond to all sorts of things. Keeping fingers firmly crossed!

Hmmm, they seem entirely random...today it was on the bus to Meadowhall, and then sat in Nando's before we'd even ordered. & then now I'm sat they happen too. I wonder what's common between them 🤔 I'll have to take notes of what I'm doing/where/drinking or eating, and see if there's anything in common. Thankfully doesn't seem to be affected by alcohol atm.

The boots are lush, aren't they! I spent a couple of hours prancing about in them when we got in while I tidied round, did some washing, folded more washing and put away my new tupperwares 🤣

Actually...common thing seems to be sitting down! I get them in a morning, sat with my brew too, and if I sit down at work 🤔

@lucysmam thanks!
That's inspired me to get myself over to Maggies next week. I think it's worth a shot too!

@lucysmam
Mischievous

But look at her pretty pink collar

Aah it suits her! She's beautiful & looks so soft 😍

She is, fur like feathers

Have been doing ok today and pain kicked in about 7 and isn't leaving

How did chemo go @Icanneverthinkofausername ?

It wasn't my favourite day ever. But I'm really glad I've got the first one over and done with. Felt fine during and for about 4 hours after then I got the queeze. It seems to have passed now.
Just hoping for sleep tonight
Thanks for remembering