Cancer Support Thread 89 - the best thread that no one wants to be on.

[LemonDrizzle10]

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@Scandimandy I’m over 50. Whoops! What’s going to happen?? I’ve not seen that advice!

Ooh I’m thinking of getting my eyebrows microbladed once treatment has finished as they’ve got very sparse. Any tips? (Or recommendations if you happen to live in the SE)

you sound just like me down to the bucket hat! I did get a wig but never really felt comfy in it

I had chemo every 2 weeks too - I kept a diary of it here you might find it useful. I found it ok for the most part but a bit of a slog having it every 2 weeks. I was glad when it was over!

take care & best wishes to everyone on this thread.

Thanks so much for all the support and advice. I have created a Stage IV thread under life-limiting illnesses if anyone wants to stop by:

https://www.mumsnet.com/talk/life_limiting_illness/4865347-stage-iv-incurable-roll-up-roll-up-this-thread-is-for-you

@OrangePippa I had to have my eyebrows done before starting chemo - I needed a consent letter from my oncologist before they could be done.
The lady I used is near Chelmsford..

@ClashCityRocker

@RedRosesPinkLilies good suggestions re: palliative care involvement. I am ‘known’ to my local hospice, as the jargon has it & right at the beginning when I was on no treatment and deathly ill a lovely nurse came round to my house and sorted out all my pain meds and anti-emitics for me. When I get back to the UK I’ll call them in again. I’ve had a good run of 9 months or so of stability but I have to accept that’s fallen apart now & I need all the help I can get.

@Scandimandy I also started taking a bunch of mushroom supplements - Lion’s Mane, Chaga etc , as studies show they have anti-cancer properties and are good for boosting the immune system; my white blood cells are v low due to treatment. But they totally fucked my liver. My bloods went haywire. So I had to stop. My oncologist said that was v common with mushroom supplements - he didn’t mention estrogen though. Either way: small doses of psilocybin don’t act in the same way. My bloods are constantly monitored & nothing untoward has happened since I’ve been taking them. I’ve found them fantastic for mental health and mood, and creativity. Many scientific studies(there’s a Johns Hopkins one which is often quoted) have shown taking them in larger doses can be greatly beneficial for terminal cancer patients (which you’re not of course!!) in order to help them be at peace with their diagnosis.

I'm curious about microblading after chemo - my brows are getting a bit sparse. I've bought some castor oil in the hopes it encourages them to grow in the meantime 🤞

We went out after all - sorted my dad's birthday present almost for his 70th next week, and found something for my friend who is 50 in a few weeks. Just want a personalised party hat for my friend now 🥳

I've picked a tea for one set for my dad, some fancy loose leaf teas, a selection of cheeses and crackers from our local cheese monger on the market, and a dinky bottle of red wine that sounded nice to go with the cheese. Does that sound ok? I find him so hard to buy for - he tends to like more expensive things & buys them for himself when he wants them.

I drop in and out of these threads. Was diagnosed March 2021 with grade 2 ER/PR positive breast cancer. Sorry to see new names but this is such a good place for support/to rant/have a handhold. There's quite a few I still recognise.
@mowly77 sorry to read what you're going through. I remember your story. It's truly shit. I think this is a place for all between waiting for tests to living with stage 4.
I just wanted to have a moan about people expecting me to be back to how I was before cancer. That won't happen. Feeling a bit like people are minimising it all.
@Scandimandy I had 4 rounds of EC then 9 weekly Paclitaxel. They did want 9-12 but stopped it at 9 due to a DVT in my arm. I had chemo on a Friday, EC wiped me out the Monday and Tuesday. The anti sickness drugs made me super constipated the first round so I was prepared the next round! You may have to do filgastrim injections to help boost your immune system while on EC, the first couple were weird but I got used to it. Paclitaxel didn't wipe me out but I got aches a couple of days after each treatment. Everyone has different side effects but I could function quite well on Paclitaxel. Chemo wasn't fun but it was manageable, I had visions of spending 5 months vomiting and never puked once.

Thanks @Vinorosso74 thats very helpful!!

Hello all, sadly I have to join you.
I had BC in 2017 and it's now back again. I had a lumpectomy with no lymph node involvement last time and a few weeks back I noticed my nipple on the same breast had inverted. I got referred to the clinic and the doctor did the usual mammogram and said it looked fine, no issues, but the ultrasound showed a small bit he was unsure of. One biopsy later and a week of waiting and sure enough, it's back again in the same place. I need a mastectomy this time as I can't have radiation twice.
Had a chest CT scan last week to see if it's elsewhere. I've not had my results yet but what is concerning me most is that I have had a painful lump on my windpipe about where my thyroid is for a while now. It seems to be getting bigger and googling is making me think thyroid cancer. So on Monday I need to ring the hospital and see if I can get a further referral to check it out. Frankly I'm terrified.

@Englishrosegarden hi, sorry you are in this situation and hope you get your scan results soon! With your 1st bc, what type was it and did you have chemo?

@lucysmam we all have nights like that for no reason. My dear old mum always said “as long as you rest your body it doesn’t matter if your brain is awake” when I was a child and I think of that now. I have a separate little sitting room I can retreat too if I can’t sleep so I don’t disturb DH.
@mowly77 I’ve posted on your thread about Cape. I’ve managed nearly 5 rounds now with a lot of complaining as I resent being on it but it’s manageable if you lower your expectations about walking far.
@LemonDrizzle10 I am on Cape for insurance as I didn’t get a PCR with IV chemo. I was diagnosed TNBC a month too early for pembrolizumab but I’ve got that in the cupboard for treating a recurrence in future. Also I haven’t had an carboplatin yet. I think I get over treated because I was a doctor and my DD is a trainee oncologist who worked in the department treating me last year. I have been on treatment now for 38 months since first diagnosis. Ten weeks to go till I finish ( for now at least).
My DSis rang today and invited herself and DM to stay tomorrow. I will have to ask her to ignore the horrendous state of the house as I’ve lost control of DH currently. At least I have beds ready and food in the fridge. The rest is optional.
She is lovely so will probably clean up for me but I am ashamed of the state of things.
@CoachBeardsJane Did we have a celebration of your NED result? If not then Yay! I can’t remember due to brain fog.
Love to all
Top x

Thanks, my 1st BC was ER+ stage 2 Ductal 16mm. I only had surgery and radiotherapy, no chemo. I assume this time I will get chemo.

Hi @Scandimandy Yes I’m in the UK - guessing from your username that you may not be? I am IDC, grade 2, ER/PR positive, HER2 negative so very similar to you.
I have decided to roll with the hair loss but am quite looking forward to the scarves and turbans. Am determined to embrace chemo chic.

Hi @Vinorosso74 - I completely identify with the people expecting me to be back to normal. I had a hysterectomy and chemo last year, and although in lots of ways I’m quite fit, I’m still fatigued and had a recurrence scare recently. I haven’t got the energy to do things like I used to, yet my family expects me back in the caring role and my friends ask me to run around doing stuff that I feel like I’m a killjoy saying no to. I have a friend who’s retiring this year and a few times (including in the middle of my recurrence scare) she’s said something about maybe she might die when she’s 75 so she hasn’t got many years left, and I comment that seems like quite a long time to me, and she says that’s she’s sure I’ll live a long time - and maybe I will - but I just feel it really negates how cancer takes away the assumption that you’ll have a long and healthy life.

And also I feel like on the one hand I don’t want people to ask me about it, and on the other I don’t want them to ignore it so it’s probably that people can’t win! Or maybe it’s that I do want my friends to ask about it, but I don’t want people I don’t know very well to poke into it, or it’s the intention behind it. I’ve got a friend who is stage four, and I’ve got a bit annoyed with another friend yesterday who was asking me questions about how she was doing, I just felt it was inappropriate - I often feel that people ask for their own reasons rather than genuine concern for the person with cancer, so I was quite short with her and said I didn’t always ask my friend for the finer details of her precise medical situation as that might make her feel worse and anyway I didn’t think it was appropriate to be spreading her information around to other people. I felt a bit bad afterwards, but it really annoyed me. Perhaps because people (particularly my DB) used to do it to me.

Sorry you find yourself back in this situation @Englishrosegarden - hopefully your BC is just local and the mastectomy gets rid of it. And the lump isn’t cancer, it’s easy to think that everything is once you’ve already had it. Did I read that thyroid cancer is quite curable? (If we’re scraping the bottom of the barrel here for “positives” - given that it’s hard to see anything as a positive).

@TopOfTheCliff you made me laugh with the loss of control of your DH. Hope you regain control soon 😁

Hello I’ve just caught up on the new thread for the first time. I won’t leave it so long again!

To introduce myself I was diagnosed with stage 3A bowel cancer in Feb. I had a total colectomy in March to remove 80% of my large bowel so I have a scar from just above my bikini line to a few cm above my belly button. I also had 30+ lymph nodes removed and one that was adjacent to the tumour had cancer detected so chemo was recommended. A few days ago I finished 12 weeks of chemo - 4 x infusions of Oxaliplatin and 4 x 2-week courses of Capecitabine. Going back to the oncologist on Friday to find out what happens next.

My cancer is caused by an inherited genetic condition called Lynch Syndrome. It also causes reproductive cancers so I’ll be having a hysterectomy as soon as I am sufficiently recovered from chemo.

@mowly77 I’m so sorry that you are having a difficult time. I will post on your other thread about my experience of Capecitabine.

@RedRosesPinkLilies I also recommend big pants! I lost 5 kg in 10 days while I was in hospital (1 kg of colon plus the other 4kg due to barely eating) but my abdomen was very distended for a few weeks so I was glad I’d gone up a size in the big pants. I wore nighties for a couple of days but then pyjamas were fine with a soft waistband. I’d also recommend getting some yoga pants with a high waist that you fold over. That way you can adjust them to sit above or below your scar.

@SierraSapphire I’ve had a similar experience with a really close friend who asks a lot of intrusive questions. A good friend of mine who she knows slightly has breast cancer and she wanted to know what stage she was, was it triple negative etc etc. I told her I don’t know because that is very personal information!

@SierraSapphire I totally relate to your unease about intrusive questions. I have one friend who always digs and wants to know exactly what’s happening in a nosy not nice way. I think her DD worked as an oncology secretary so she thinks she knows everything. Another gardening friend asks me abruptly “what’s your prognosis?” Or “ how long have you got?” I want to throttle him but just smile and say “All good” blandly. I think he is just out of his depth. Or possibly after my allotment 😂
Annoyingly my hands and feet are blistering after only 3 days back on Cape. I hoped it would be at least a month. Rubber gloves on!
Happy Sunday to all
Top

@TopOfTheCliff , that made me chortle, your ghoulish friend after your allotment! Sorry to hear about your sore hands and feet making a comeback.

@LemonDrizzle10 microblading is not recommended for the over 50's because the skin is thinner but I guess it depends on your actual skin :)

Hi everyone,

I haven't posted for a long while, so thought I'd pop on and say hello. ( I was chocolateismyfavourite)

I saw some post and ask if anyone else is stage four, I am. Breast cancer, with liver mets.

Just started fourth cycle of capciteabine on friday, after the second cycle the oncologist reduce the dose form 1800 to 1500 a day as during the 2nd cycle i suffered really badly with my feet, was like walking on sever sunburn and basically half my left foot was covered in compeed plasters where i kept get blisters. The third round was much better and they only went slightly warm on day 12 of 14, hoping for the same this time round.

Apart from that, and a runny nose that just wont stop, its been weeks, its not hayfever, I've tried all sorts to stop it, not much else to report. Had a CT yesterday to see how all is going, results on 23rd.

Hope you're all enjoying the lovely british summer weather lol😂

@Florabritannica no I'm in the UK, South. My username is completely and utterly random, can never think of anything suitable when required :)

@LemonDrizzle10 Chelmsford? not far from me :-)

@TopOfTheCliff God, so sorry about your feet, they've taken to giving me some foot cream in with my tablets so I don't have to buy it any more, using it about 3/4 times a day....seems to be helping...didnt enjoy taking my socks of and leaving peeling skin all over the floor, it's Eucerin - I'm sure you probably know of it, or use/have used it, but just incase not, it may help a bit?

@Pinchaperfect hello neighbour!

Thanks @Pinchaperfect and sorry you are sharing the blister horror. I am on a robust 5000mg Capecitabine a day and my oncologist won’t reduce it. I’ve got Voltarol Gel and Udderly smooth with urea. One is prevention and one is cure. Plus all the best blister plasters and some lovely comfy Hey Dude shoes. Luckily my late Aunts Parking angel is still finding me convenient spaces so I don’t have to walk far. Thanks Aunty!

@LemonDrizzle10 HELLO! LOL :-)

@TopOfTheCliff 5000?! and my family thought my dose was high! she said the whole point of me being on them was to have as normal life as poss, and seeing as I was sat with feet up days at a time, crying because of the discomfort and not being able to go out, that wasn't that so reduced for me. I did take Ibruoprofen tablets when it was bad and thought it did help, I have Voltarol here but wasnt sure I could put it on my feet, good to know i can. - I've been wearing some very compact trainers which are comfy and I don't feel any movement or slippage.