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Cancer Support thread #78 - Newbies welcome

999 replies

MrsPnut · 03/03/2021 08:10

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

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Miava · 16/03/2021 17:36

The link for the bra's would help ...

DODOING Zip Front Sports Bra Post... https://www.amazon.co.uk/dp/B089T7Z769?ref=ppxpoppmobappshare

Miava · 16/03/2021 17:38

@bontopia that's so great to hear! Thank you! I'd love to take up running again (I'm scared after my implant!). The hair is the biggest deal for me but I'm wondering how long I'll stick at the cold cap (especially if I lose my hair anyway and even more so if I'm due to wear it for the 12 weekly rounds).

Miava · 16/03/2021 17:39

@Acinonyx2 port insertion is on Monday 😞

(Sorry - I will remember to reply all in one message next time)

Acinonyx2 · 16/03/2021 18:01

@Miava I'm going to buy one of these now to check the fit (I'm a big girl - my surgeon: oh they are big aren't they). I don't mind them all seeing my breasts but I do like to keep my hat on. I don't like the idea of being bald in the hospital even under GA!. Amazon loves me.

Just the mention of makes me feel limp. How long were they in for? Sad

Miava · 16/03/2021 18:07

@Acinonyx2 mine was in for 10 days. You have to empty it daily and call the hospital with how much there was. Pretty gross. But you can get a bag to carry them in so you don't have to look at them apart from the morning measure. x

Acinonyx2 · 16/03/2021 19:05

@Miava 10 days! Shock I have a ton of canvas shoulder bags would they do?

HauntedDishcloth · 16/03/2021 19:08

@Acinonyx2 No, I've never had a PICC or port - yet. My veins have never been good though.

@Miava I cold capped for my first two chemos but couldn't face it afterwards as I was having a bad time of other side effects. A lot has come out & is still coming out. I think I now have a mullet (too scared to look properly) with a couple of bald patches at the front...these are from when I didn't comb out my hair for 5 days because I felt too rotten & ended up with huge mats & dreadlocks that were not fun to get rid of. So don't do that!

When I comb my remaining hair out, I put it straight out the window after each stroke so I don't have to confront a big pile in one go. I feel guilty though as I read somewhere you shouldn't do this in case birds take it for their nests then get it wound tight round their legs which die off from lack of circulationSad

MrsPnut · 16/03/2021 20:08

I have read back but it’s all fallen out of my ears so just hugs, there there’s and booze all round. Take what you need.

I still have vagine problems, now at 2 weeks of super ouch and enough products to start a wound care centre.
I’ve seen the GP twice and off to see my oncologist tomorrow. Radiographer and very experienced chemo nurse will also be there for a look, for all my moaning about my oncologist, she has called me three times in the last week to check how I am.

I also had my PICC line removed today as I don’t need it for a few months. I have pre-op assessment and anaesthetist assessment next week and the week after then will get surgery date.
Surgeon is doing a lumpectomy and reduction on the other side so I will have less annoying boobs. I am currently a 38JJ so there is a lot to lose.

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MrsPnut · 16/03/2021 20:10

I also managed to fall over on Friday night whilst herding a dog, so have a huge black eye and bruised swollen knees.

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catnidge · 16/03/2021 20:18

@Bloodybridget, I hope you are feeling a little better today? Good luck for the appointment tomorrow.

FizzyOrange · 16/03/2021 20:59

@Acinonyx2 you will probably remember, I am terrified of surgery too and often wonder how I ever had a baby. I only have one child as it was so horrific for me though - I had a 'natural' delivery but was screaming with pain at 1cm so had an epidural and found it all very traumatising. I too don't want anyone to see my bald head in hospital and am hoping I can wear one of those J cloth hats. Did anyone else get one of those to wear for surgery?
'

BadEyeBri · 16/03/2021 21:16

PNut sending you soothing thoughts for tomorrow's appt.
My PET/CT came back showing no spread outside of cervix and parametrium, phew. I've been accepted on to the control arm of the Interlace trial and I'm starting treatment on 29th March. My chemo will be cisplatin. Does anyone have any idea what I need to bring with me for chemo days? I get stressed about wearing the right stuff, getting to the right place on time, parking, having the right stuff with me etc I'm not too anxious about the actual treatment. So far.

backformore · 16/03/2021 21:38

@Acinonyx2 Congratulations on finishing chemo! What a rush - I'm one round behind you and finish on April 5. It's actually gone surprisingly quickly, overall (though it doesn't feel that ways on the bad days!). Do you have a surgery date lined up? Have you had your follow-up scan?

My dad just got himself a bass guitar and is permanently jamming away with various YouTube tutorials. Must say I'm tempted to give it a try when we can finally see my folks again!

@Miava Welcome to the thread! I've been on a similar course to you: three rounds of FEC (every three weeks), then three rounds of docetaxel (every three weeks) - have just had the second docetaxel. I've also started herceptin and pertuzumab which I'll continue with every three weeks until the new year. Am thinking of those as my maintenance doses, a bit like people who go in to the salon every three weeks to have their roots touched up!

Everyone responds differently, but for what it's worth I'd say don't expect the worst, but be prepared to be kind to yourself, get lots of rest (while keeping up the walking and mild exercise/fresh air), and do take whatever drugs are offered to help you mitigate the side effects - you don't need to suffer in silence! I found that the anti-nausea pills kept me from feeling woozy on the FEC - I was mostly just wiped out for a few days after chemo, then felt better long before the next round. The docetaxel has given me a wider range of effects (aches, sore throat/mouth, acid reflux from the steroids, mild neuropathy in my fingertips, bit of a rash/skin breakout that resolved on its own, the runs) but for most of these there are pills or mouthwashes, etc. that can help.

I was also worried about the hair loss, but honestly once it's gone you just get on with it. Saves lots of time in the mornings!

I've got surgery still to look forward to - I'm small of boob and the lump is no longer palpable, plus I don't have the gene, so am hoping it will be a minor lumpectomy and biopsy of the nodes (2 affected, we think). Really hoping to avoid drains! Then radiation in the summer, which sounds like a breeze compared to everything else...

Hello and hugs to everyone. I'm also falling victim to the retail therapy here - blame boredom and cabin fever and Covid, as well as a sense that I've earned a little fun! Mostly picking out clothes for the summer (for myself and the kids)...but also planning for a mega trip in 2022 to celebrate my 40th and (I hope) being cancer and Covid-free. We're in Canada but husband is British: we were supposed to go back last year to see family, but obviously that hasn't happened. So, planning on a few weeks in Wales/Blighty, then hope across the Channel to Brussels where we used to live (to show our kids our old haunts), then Paris and the overnight train to Venice...finally winding up at Rovinj for a few days of sun and sea. We're calling it the Caernarvon to Croatia Tour. God knows when we'll actually be able to book any of this, but I have to dream!

backformore · 16/03/2021 21:41

@FizzyOrange Have to smile at surgery/childbirth fears - my biggest fear is needles, so I actually opted for waterbirths partly to avoid having to be hooked up to an IV while in the labour! Bonkers, right? Fear of jabs and veins and whatnot (also see drain dread) completely outweighed fear of pain. But then I was also lucky to have had quick births - I'm sure I'd have felt differently if things had dragged on...

Miava · 16/03/2021 22:17

@Acinonyx2 re: the bag - you could probably fashion something from an existing canvas bag. You need to be able to have it quite close to you and I preferred it higher up (kind of resting on my hip) to avoid seeing the tube too much. But I was given a bag by hospital so they may have one for you?

@HauntedDishcloth thanks so much for the tips on hair brushing. I only actually brush my hair once every two/three days as it is so I need to manage that better otherwise it sounds like I'll be in trouble!

@MrsPnut ha! I'm the opposite to you - I actually got them to pop in a bigger implant so I finally have a "full" boob (other one will be balanced up after chemo). But sorry to hear about your fall - I hope your eye abs knee aren't causing you much pain.

@backformore thanks for the encouraging words on chemo. I really am a very positive person but I think the millions of appointments suddenly are just hitting me and I'm feeling quite sad about it all. I'm also 40 next year so am planning a big celebration 😊

MrsPnut · 16/03/2021 22:34

@BadEyeBri Cisplatin needs a lot of fluid along side it as it can damage your kidneys. You need loose trousers that you can get down quickly one handed. I also had to pee into a jug to measure output. I do this occasionally and estimated the rest of the time.

I had 1ltr of saline, cisptlatin in 1ltr of saline and then another ltr of saline so in for a full day. It took 2 hours for each ltr and then additional meds and resetting machines in between.
Take snacks, iPad, book, phone, headphones, blanket, slippers and v pillow. I looked like I was moving in by the last few weeks. I also took loads of drinks and coffee.

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Babamamananarama · 16/03/2021 23:55

Well I've had an eventful day.
Spoke to my Haemotology team yesterday about the breathlessness, and my consultant asked me to come in to have an assessment. Given symptoms which is likely my lymphoma re-growing, he decided to bring chemo forward a couple of days and start me ASAP (was meant to be Thursday) and put me back on 10mg steroids to mitigate the symptoms.
So they told me to bring hospital bags today (I had PICC line appt this morning) with the hope that a discharge would happen and they could get me in. Duly said goodbye to kids etc this morning.
PICC line all very high stakes as they warned me that because my major veins are all FUBAR from the lymphoma, they would have to be super careful and maybe abort if any resistance was felt - and that if they didn't get a PICC in my chemo would be delayed while they scheduled a Hickman procedure. Not ideal.
They then got cracking only for the first two veins to collapse when the local anaesthetic touched them.
It got to the stage where they only had one vein left to try which was too narrow for a two port tube - rang my consultant who said get something in please, it's urgent, so they swapped to a thinner tube. I asked them at that point to just go for it without the anaesthetic, and very fortunately it was third time lucky (it didn't hurt either). All very relieved including the excellent and very lovely vascular access techs.

Anyway after all that and my Haemotology/chemo briefing a spare bed was no closer so they sent me home. No room at the inn tonight so I'm savouring a last night here, in for chemo first thing.

thereisonlyoneofme I'm a rider too - have been sharing a lovely horse for the past few months since moving to Cornwall, after a lifetime of wanting to be properly involved with horses but living in London where it wasn't feasible. But I've been too ill to ride since January so missing it hugely. I'm really hoping I'm not out of the saddle too long...

Who mentioned steroid energy? I think I've realised that it has been the steroids keeping me chipper. The three days I've been off them completely my mood went through the floor and I was suddenly really cross and miserable about having cancer. Back on them and I'm back to being chipper and buzzing around trying to get stuff done...

Bloodybridget · 17/03/2021 05:35

@Babamamananarama good luck for the next few days. And good wishes to everyone else - too early for me to check in properly (although I am having breakfast!).
I'm feeling no worse, and glad I will be speaking to a doctor today.

HumphreysCorner · 17/03/2021 11:52

Morning all

Feeling a bit rough today 3 days after my Covid jab. DH had to take me for my flush and bloods earlier but it all worked fine thankfully. Will catch up later.

HC x

Bloodybridget · 17/03/2021 18:43

Doctor didn't phone me today, I'm fed up. I think there must have been a muddle about when my regular pre-chemo oncology appointment was due, with the last treatment being delayed a week. I suppose I'll phone about it tomorrow.

However I have booked two nights in a hotel in Norfolk for late May - free cancellation up to a couple of days before, so should be safe. Am very excited!

Shallysally · 17/03/2021 22:20

Hi everyone Flowers

I’m 50, post menopausal and had an ultrasound last week as had some bleeding.

Call from GP today, there is some thickening of the womb lining so have been referred to gynae.

I didn’t even know that bleeding post meno was anything to be concerned about until I contacted the surgery. Haven’t been worried until today.

AlbertCampion · 17/03/2021 23:29

Hello! Just popping in to say congratulations @Acinonyx2 on the final chemo! And sending lots of fist bumps/high fives to others who have had significant hurdles this week and got through them.

I have been really hit by chemo no 5 on Friday. The exhaustion has been extreme, but thankfully DS is being brilliant and getting on with the home schooling without a murmur. He even sends me upstairs for a nap when he sees I am getting tired! It's lovely, but also horrible to think that my eight year-old is having to deal with me being ill like this.

@backformore your trip sounds amazing. I spent some of my childhood in Belgium and since I have been ill I have been thinking loads about how much I'd like to take DS to Brussels to see where I grew up. Maybe I should plan my fantasy trip to cheer me up!

backformore · 18/03/2021 00:40

@AlbertCampion I get it with the mum guilt (DD is also 8 and has been a trooper throughout my treatment, with homeschooling, etc) - but try not to worry too much. Obviously it's a crappy thing to be dealing with, but I'm increasingly convinced that kids around this age take on/in only as much as they can handle. Your DS sounds like a sweetheart who's going to be just fine xx

And yes to planning a fantasy trip! Also, Brussels always struck us as a very child-friendly city: extremely walkable, lovely parks and green spaces, quirky museums...and waffle stands on every street corner! What's not to love?

MarthasGinYard · 18/03/2021 06:37

I hope it's ok to post. I'm beyond worried had my CT scan last night and are awaiting results.

MrsPnut · 18/03/2021 07:30

@Shallysally @MarthasGinYard Welcome, pull up a seat and try to rest.

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