Cancer Support thread #78 - Newbies welcome

[MrsPnut]

Welcome friends old and new, to the most supportive thread on Mumsnet. Everyone is welcome whatever stage you're at (fears, diagnosis, treatment). Introduce yourself and say Hi

Good luck to everyone having treatment this week. Hugs to all - especially if you're feeling rubbish (physically, mentally, or waiting for results - ugh

@Acinonyx2 I was pleasantly surprised by 3 days! ☺️

@Miava we'd be re-enacting the Hunger Games if it was 14 days! I'm losing track of everyone - where are you at with your treatment?

I thought they said two weeks when I asked last week, I'm more worried about that than the surgery, I'm in again tomorrow I'll ask again.

@Acinonyx2 I'm due to start chemo next week and dreading it.
And yes to the Hunger Games! We still went out for walks (even though technically we shouldn't have) as I needed the fresh air abs sunlight. I just kept away from people. But by the book it should be proper isolation. x

@KentishMama I've found a few bits online and it looks like they've changed from 14 days to 3 - hope my place is like that - I agree 14 days would be a nightmare!!

@Miava I am super-keen on my walks. I endlessly tell people about the study that found walking 3-5 hours a week reduced the recurrence rate of breast cancer by 50%

Sorry I am one of those who complains a lot about chemo!! But it really varies a lot person to person. But if you find you do want to complain and compare the great and the small annoyances - I'm your gal!

What's your first chemo cocktail going to be?

Thanks @Acinonyx2 I LOVE walking too. It's so nice to get out. My plan is to walk everyday still but we shall see. But really interesting stat you have there - thanks!

I start with EC for four rounds (every two weeks) then paclitaxel weekly for 12 weeks. When I start paclitaxel I also start herceptin and pertumzumab every 3 weeks for a year.

I'm just feeling in a massive strop about it all. I don't want to feel like crap and I don't want to lose my hair .

Oh I'm much more obsessed with my fingernails than my hair! Although I am getting tired of hats.

You're doing it the other way around and on a different schedule to me. I started with docetaxel (cousin to pac) with herceptin and pertuzumab for 4 3 week cycles, now just had last of 3 3week cycles of EC. The steroids and high does antinausea generally tide you over a couple of days or so then just see how you go.

You might get some filgrastim home injections too - quite a few of us are experts with those!

I don't generally 'do' pills and I'm struggling a bit with taking the helpful home pills so probably don't manage the nausea as well as I could.

On week 3 when I feel better I get a bit manic and do crazy stuff like buy robot hoovers and electric guitars

@Acinonyx2 Oh God! I don't need any encouragement to spend more money! God to hear you've stayed on top of things though. I've been told to paint my nails a dark colour to protect them?!

@Miava I'm not convinced that painting the nails is the best solution, personally, although it's what a lot of people do. If you do - be sure to use a water-based varnish (there are some made with chemo in mind). I got some light weight black silk gloves (I get hot walking) and some driving gloves with holes in actually designed for laaaadies who don't wantt to catch the sun while driving!

I also use Polybahm which has been tested for this purpose - a bit sporadically and top up with a Dr Organic nail oil. Soap and water is the enemy, unfortunately. I've kept them on - but my RH index is wanting to lift off and this whole bad patch needs to grow right through and be replaced which will take a looong time. So obviously, I need an electric guitar, right?

Yes and I had been preaching to DH about tightening our belts and budgeting

You can tell I'm on steroids - waxing on and on....

@Bloodybridget I also feel I have had conflicting advice about the chemo hotline. On my first cycle, they stressed that at the first sign of infection, I should head straight to A&E. On the Friday, I developed the tomato face and my urine was frothy. I hadn't bought a decent thermometer so was using the disposable strips the hospital had supplied me with which I didn't trust as they were reading 35C. A&E said to call the chemo nurses as no sign of infection and as the tomato face was bilateral not to worry. I came home and left a message (they never pick up) and a nurse called me at just before 6pm and told me off for exposing myself to Covid at A&E and suggested I drop a sample of urine in at the GP - mine closes at 6pm on a Friday like most do . Do others have a hotline where the nurses pick up the phone when you ring or is the answerphone usual?

@FizzyOrange mostly when I've called the hotline, they've been helpful - but one time, they should have called me back to tell me to take antibiotics, but didn't, and another time, I felt they were rather dismissive. I think I've always got through to them, tho', i.e. not an answerphone.

@Bloodybridget I always have to leave a message and then wait for hours for them to ring me back. When the hotline closes at 6pm, we are supposed to ring the cancer ward. I tried this one night at 4am as I was crying with bone pain and was just told to take another dose of paracetamol after 4 hours - hardly expert advice especially as after this call I rang 111 who prescribed me morphine!

@FizzyOrange I was always told to ring the hotline first (not head to A & E unless they told me to) and someone always answers - even if it takes a while. I called a couple of times in earlier cycles and they were very nice. Both times, I rang because it was the weekend so couldn't call my regular nurse. I hardly ever call my nurse but of course it would be a weekend

Not much of hotline is it then?

Hi @Miava, I'm another chemo complainer! Later this week I'll start the docetaxel plus the other two immunotherapy ones for three cycles. I had FEC first - wonder why I had the F as well?

Will you have a halfway scan too?

When I had my first chemo, the nurse said to plan something as a little treat for each cycle. I interpreted this to mean buy stuff online I've also got a bit addicted to scrolling through our local facebook marketplace - DP's been sent out to collect jigsaws and random garden bits much to his general disdain and reluctance!

Chemo hotline for me is 24hrs & I was told to keep ringing until it got answered. When I'm in having chemo I can hear the nurses answering it to other people ringing in.

Thanks @Acinonyx2 and @HauntedDishcloth - having now Googled water based nail varnish I have a base coat, colour and top coat sitting in my John Lewis basket costing me £50 🤦🏼‍♀️

I do like the sound of a treat each round though ...

x

@Miava we all must do our bit to support JL I've got my eye on some PJs for surgery....

@HauntedDishcloth FEC was the standard combination then some studies came out saying the F was just overkill and a lot places dropped it.

@Acinonyx2 what surgery are you having? I'm not a PJ person but bought some lovely Hush PJ's but only wore them a couple of times as I was able to put on "Norma" clothes very quickly. I have, however, got excellent use out of my post-surgery bras ...

Normal not "Norma"!!

Thanks @Acinonyx2. I think it might be the one that some people can't have due to not having the particular enzyme to metabolise it. I had to have a specific blood test beforehand to see if I was OK to have it.

Had my pre-chemo bloods today & the bruises were still there from the last time three weeks ago

@ I'm not a PJ person either and you're right - I'll probably hardly wear them. I'll be having lumpectomy but not sure if it will node biopsy (seems very optimistic to me) or just straight to level 1& 2 clearance.

Did you buy some bras

I'm very squeamish about surgery! I don't do 'wounds' It's astonishing that I ever had a baby.

Have you got your port yet (I have a port too)?

@HauntedDishcloth the relentless venous misery is not something they really tell you about treatment I thought you had a PICC (so hard to keep track!)? Or has it gone kaput?

@Miava I had just the same chemo/immunotherapy as you and I finished 4 weeks ago. It is daunting but for me the side effects weren't too bad, although I've lost my hair - I gave up after 3rd time coldcapping. I did a lot of walking and some jogging/cycling and I felt fine to go on a skiing holiday a week after finishing chemo (allowed where I live!). My nails were fine during the EC part. I was given frozen gloves and socks to wear during paclitaxel infusions and my nails look ok. Hope all goes well for you.

@Acinonyx2 I got one bra from M&S but my "Best Buy" has been these from Amazon (very cheap). I alternate them so I have a clean one each day. They are super comfortable and give space away from the node wound (which my M&S one was resting directly on). But ... as my surgeon put it ... I am "of modest breast" so if you are bigger and need more support I don't know if they'll be as good.

My wounds have healed amazingly well and they literally look like a pen line. But if you are squeamish you'll not enjoy the drain (assuming you'll have one?) 😕