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

[LemonDrizzle10]

Last one filled up quickly!

I had so much fun this morning. My hospital physio dept hold exercise sessions for people who've finished cancer treatment and I went to one today. The physio was really nice, and there were 6 of us taking part. They'd organised it well with a circuit of different things eg lunges, trampoline, weights, etc. She put the Barbie soundtrack on 😂it was great!

@dotty2 let us know how your appointment about lymphedema goes. Interested to hear what advice you get as I battle on to try to get them to take my swelling as a matter of greater urgency. My next lymphedema appointment is not until the second half of December. I am desperate not to miss the window of opportunity to have LVA surgery which apparently needs well functioning lymphatic left. Yet, everyone I have seen seems to want to 'wait and see' for a bit longer when it is obvious to me that things are getting worse fast. Had swelling mostly in upper arm. Now it is also in parts of my forearm and thumb area. It is making me feel really down - the thought of being potentiallu sadled with a lifelong awful condition.

Ah @dotty2 sorry to hear you're feeling anxious. Hope you get some answers. There's so many side effects and other delights arising as a result of treatment let alone the actual cancer itself and it gets impossible to know what's causing what.

Have been for a swim and done the shopping so gradually getting my shit back together.

Well done on swimming and shopping Clash

The tiler has finally been in and done kitchen tiles.

Hi, I hope it's ok to pop on and ask a question.

I'm nearly a month into tamoxifen. I did start to feel so much better after the first couple of weeks but this last week I feel I'm going down hill.

I know it can sometimes interfere with thyroxine which I'm on. Is anyone here on both and did you need to tweak?

I'm rather hoping it is having a bit of an impact 😬

Also any tips to deal with the cold sweats?!

Fine IKEA. I was just on Tamoxifen alone, the first month I did have aches and pains and sweats but they improved on changing brands though it could have just been time. They also told me radio can cause effects after, don't think it did and chemo effects can be after plus you go into menopause for some like me so it's hard to know what causes what. Plus it's no. Hrt. I don't really get sweats, got shivery during chemo but would just take temp to check no infection and get fleece bedding to keep warm or dress in warm clothes. I am on a 6 week break ATM and actually don't feel much different off it to on so I suspect a lot is unmedicated menopause plus some chemo damage with nerves and eyesight. Maybe ask your team though maybe worth taking temp just to check not ill if got better before.

Oooh I like!

Saw respiratory consultant today
Confirmed stage 3. 3c in fact but at least it’s not stage 4
T3 M3 whatever that means

The PET scan contradicts the CT scan and doesn’t show it’s invaded the hearts pericardium sac, which would be good news, but I’ll have a scan to confirm that one way or the other

The bad news is more lymph nodes are involved than originally seen, a few are into the other lung

So I’m booked in for biopsies on 24th - they can’t do that sooner as I have to come off the stroke meds and wait for them to be out of my system

Then they’ll look if they can do radiotherapy across the chest to zap those lymph nodes, without hitting the heart, but they don’t know that yet

So more tests, more waiting. They are fairly sure its primary lung cancer and not metastatic breast cancer, but the biopsies will confirm.

@Tilllly , that sounds like mixed news, and more waiting must be hard. Thinking of you.

I’m back from my 1 year follow up. As with every other surgeon I’ve seen, he was an aloof, slightly cold man. Why do so many cheerless men go into breast surgery??? He confirmed that my forearm does look slightly enlarged like there could be some fluid retention so is referring me to the lymphoedema clinic. He wouldn’t say anything further about all the pain but said they were best placed to assess. There is ‘a bit of a delay’ in referrals, and he said it would be at least 1-2 months. I’m going to investigate private options, since I’m also interested in LVA which is only available on a trial at the Marsden at the moment. Sorry you’re having frustrations with your treatment, @isaxx

Thanks Tillly So sorry to hear your news, though good its not stage 4. Is it N3 rather than M3? Hope they can get treatment started quickly.

@Silkiebunny I love the penguin tiles!! 💜Very pretty kitchen.

@Ikeameatballlunch I'm on Levothyroxine, but not Tamoxifen. Can you book in for a TSH, fT4 and fT3 at hospital every few weeks at the beginning? My oncologist checked my levels twice during treatment, and my endocrinologist also checked. Levothyroxine can be affected by various things can't it, like dairy products, iron, various meds eg AdCal, I just don't know about Tamoxifen. Hope you can find out soon.

@Tilllly I'm sorry to hear that. As you and @Silkiebunny said, at least it's good to hear it's not stage 4. I'm also stage 3c (in my case Her2 breast).

The M3 could be the mitotic count ie cell duplication / dividing speed. They give that when they grade a tumour.

That's like me. I had bleeding between periods and anaemia. They looked at my ovaries and womb lining. That showed a fibroid and fluid in my womb.

After that they gave me a fit test. It was over 200 even though I didn't see any blood. I've had colonoscopy and sigmoidoscopy because of mega polyps. Takes 8 weeks to get histology back.

Then a couple of weeks ago I found a lump in my boob since been told it's cancer.

I knew something was wrong for over a year. Weirdly the first thing I noticed was that I smelt different!

Ooh @Silkiebunny your new kitchen is fabulous! I like the colour scheme a lot. Mine needs a freshening up and a good clean when I have the energy. I have a bare stone wall which is covered in grease.

I got a copy of the orthopaedic consultants letter about my arthritic hip today. He is going to rebuild my acetabulum using a bone graft. Scary stuff but 35 years after I fractured my pelvis he thinks he can give me a better functioning hip to allow me to resume my active life. It means I won’t be truly able to resume exercise until March 2024 but I can get fitter with cardio and strength training once I’m off chemo. Just 12 days to go now. The Zoe diet is very interesting and I am losing inches if not pounds.

It feels like treading water waiting to reach the end of treatment. Still no sign of the “urgent” bone scan after 6 weeks. Bah!

Thanks Summer

Yes tothelefttotheleft that's very similar and also I had hip pain on the side of the breast cancer and rib pain and they said they wouldn't be linked but when lump taken out they went. I had weird sensations in my rib area for a couple of years pre the cancer being discovered.

Thanks Top I would get someone in if you want kitchen done and also take a holiday whilst they do it which could be a round the world tour if its like my lot Glad you are nearly finished and hope you get that bone scan soon.

Could've been, yes
Still don't know what it means tho!

Ooh @Silkiebunny I love the penguins! My kitchen's a shithole & at least 30 years old - maybe older. It needs a proper deep clean too.

@TopOfTheCliff the wall behind my hob is embarrassing but I'm struggling to find the motivation to be bothered with it 🤷‍♀️

I've got kick ass tummy ache this evening - not sure whether or not it's from the new meds as dd1 also has tummy ache. We can't think of anything we've both eaten or drunk though that might be the culprit.

Meeting at school went well & I mooched round for the dinner hour chatting to various people. I've agreed to the 1-1 role with the condition that, if the child does lash out, there is always a second adult who'll swap out. We'd already discussed this as an eyfs team beforehand though so everyone was expecting it to be the case.

The other option was to swap into a KS1 TA role but that would mean still swapping out for things like phonics and maths with their current TA & just means the little one being passed from pillar to post. Or I could have taken the 1-2 role with two of the children with less severe autism, who I've been around for the past 2 years in EY.

I went with "suck it and see" 🤷‍♀️ I can always go back if it doesn't work out & change things.

Some of the HT's questions were a bit personal though & I sort of avoided direct answers - I don't really want to discuss my medication with them (unless I needed to).

They want me to speak to OH as well...I agreed to that so long as no-one pushes counselling. I'm quite happy offloading on my friend & her dad for now & will access it myself if I want it.

Not a bad day, I managed to be quite productive this morning while in wait mode too 🤣

Tillly I think T is a size category of your tumour. N is number of nodes effected. M is mets. So I think its much more likely it was N if you are stage 3 which would mean 3 nodes are affected. Though would check with team of anything unsure about.

Thanks LucysMam Glad the meeting went OK. I hope the child isn't too challenging. I have one with autism though he was pretty easy at primary and he would have loved you, he loved the creative gentle TAs. One made pipecleaner people he was fascinated by.

I think OH is fairly standard, if they go on about counselling you could always say you are on a waiting list, the lists are quite long. Mine were just a chat about my week so quite easy but didn't really change anything.

@dotty2 are you being followed at the Royal Marsden? That's where I am. When you see the lymphedema people, do ask about the trial. They mentioned it to me. They also gave me some info about private surgery. The problem in my case at the moment is that I have a seroma on my chest and some fluid filled nodules on my arm. They think should be resolved first so the lymphedema can wait. My concern is that if it is the lymphedema causing the fluid filled stuff, they should address the lymphedema rather than wait and see if the effects of it just go away. Have an appointment next week following up with the breast surgeon and will try to see if something can be done to not just leave me hanging.

No, I’m in the midlands. Sorry, I meant that the trial is only recruiting at the Royal Marsden so no good to me. I see their surgeon also works privately though. What a pain about the seroma etc

Pipe cleaner people sound fun @Silkiebunny ...I'll be off for a google 🤣 This little one likes dolls and people figures. I was going to paint him his own set of peg people at one point but then didn't because he tends to put everything in his mouth 🙈

Thanks for the reassurance about OH - it's the one thing that's niggling at me that everyone keeps pushing it & really I'm managing fine. When the constant music in the background stops, I know I'm not right, so may access it then.

Mine also put everything in his mouth at primary age, remember him chewing my hair at aged 8 and "cleaning coins" in his mouth. Biting his top, biting plastic cups. Yes I think this lady made pipecleaner people and animals and DS was fascinated. I used to make egg people for him - he used to say Mummy I will do the eyes, can you just decorate it and make them an outfit then we've made them together. 😂We had lots of egg outfits.

Aw, egg people sound like the kind of thing I'd have done with the girls. I have some pipe cleaners I think, somewhere, so will google tomorrow when I find them.

I saw rock painting kits to make animals which looked lovely though only for the calm autistic child. DS would have loved those.

I used to love doing rock painting when I was younger. I painted cottages with flowers in the garden, so much fun. I'd forgotten all about that till I was reading your posts. Just searched online and there seem to be loads of different kits for rock painting now.

@isaxx So sorry to hear about the seroma and oedema, and that they all seem to be waiting to see. When was your surgery / radiotherapy? Good luck in the appointment with your surgeon, do let us know how it goes.