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

@FizzyOrange That really is rubbish, the waiting is hard enough as it is.

I had a radiographer yesterday that struggled to find my tumour for the marker. I don’t know why because it is still about 4cm long.
She even left the room at one point to go and look at the previous scan, and when she’d finished and gone, I laid there thinking how on earth could she not find the fucker.

I’ve just got my Covid swab on Sunday and then it’s packing and self isolating until Wednesday morning.

Good morning!

First time posting on this thread.

I'm 36 with grade 3, triple negative breast cancer.

I'm 14 weeks into chemo, 6 weeks left, then I'll have surgery and radiotherapy.

I'm flipping miserable 😂😭.

I'm fat from the drugs, sick from the drugs, tired from the drugs and I miss being as active as I was.

Still, there is joy in my life and support and things to smile about. My situation is not as bad as others.

I'm worried about recurrence though.

Has life changed forever?

Hoping to use this space as a bit of a vent space..

So I have to pretend every thing is ok here?
X

@MidnightLoo Welcome to the thread no-one wanted to join. Feel free to vent and moan, we’ve all been there and we do understand.

@MidnightLoo welcome! Chemo is a bitch - I am the the queen chemo-complainer. Recurrence is always a worry. Do you have kids?

I'm off googling videos on how to draw eyebrows that don't look like a an astonished cartoon character. I also bought a new wig in a totally different style and colour - I like feeling like it's not me and I'm in disguise - but I think dh and dd are still in shock.....

Good morning all and Happy Easter. I am now officially retired and also out of shielding for what it’s worth. I went in to see my team and was made a fuss of with a takeaway curry and some generous vouchers. I haven’t taken it on board yet.
Since the zolendronic acid infusion I am struggling with severe joint pains. I know I have been doing too much and my muscles hurt but the joint pain has kept me awake at night. I was expecting this with anastrozole but three packets in things had been fine. I shall yet again have to slow down and do less to see if it settles. Sigh. My lovely SafeFit lady is doing gentle yoga stretches with me which helps. And all the drugs!

@Acinonyx2 I was told I would get Kadcycla after surgery if the cancer cells were still active. It was approved by NICE last June for this and costs $98000 for a course! Apparently sometimes the tumours haven’t shrunk but they are just dead cells so they won’t know for sure until they get the histology after your operation. It’s yet another mop up insurance policy to prevent stray cells causing a recurrence. You wouldn’t need to take Herceptin as well as it is part of the Kadcycla.

@Livelongandprosper great news! I hope you are recovering well from surgery.
@thereisonlyoneofme I hope your recovery is going well and you are being supported at home.

@AlbertCampion well done you for standing your ground and waiting for a competent nurse. It’s never easy resisting the plan the staff have devised for their own convenience instead of yours.

Best wishes to everybody else. May your weekend be as hospital free as possible.

@MidnightLoo welcome to the place you don’t want to be. Of course you don’t need to pretend here. You are among friends. I went through the same course as you but at the stage you are at I fell and dislocated my ankle. For Gods sake don’t do that!
Life won’t be the same again because you won’t be the same person after going through this shitstorm. In some ways this will be a bereavement but in others it is empowering. Either way it takes some getting your head round. I keep being told I am going to have a breakdown and need psychological support. Excuse me? My coping mechanisms are lots and lots of outdoor exercise and wilful denial. We all have our own way of finding a route back to the new normal.
Have you kept active during chemo or has it flattened you? The SafeFit trial from Macmillan is fab and helps, you stay healthy during and after treatment.
Sending hugs x Top

[quote Acinonyx2]@MidnightLoo welcome! Chemo is a bitch - I am the the queen chemo-complainer. Recurrence is always a worry. Do you have kids?[/quote]
Thanks for the welcome! @MrsPnut

Yes got a three year old. She is awesome ❣️💙.

I missed running around with her though.

@topofthecliff I've gone from training for half marathons and my strongest to being out of breath walking up the stairs. But trying to get out for walks when I can.

I'm on EC now after 12 weeks pax and carb. The injections are giving me big bone pain but taking antihistamines with it

Finally managed to organise some therapy because I'm in big denial and very much putting on a brave face.

@MidnightLoo a 3 year-old! I feel exhausted just thinking about it - mines 15 and glued to her pc.

I used to take antihistamines too - Clarityn. I also walk 2-3 times a week with friends. As you are new I will mention again the paper some of us have read that found that walking 3-5 hours/week cuts the recurrence rate of breast cancer 50%. That's pretty motivating!

@TopOfTheCliff a lot of my anxiety about the new drug comes from dire warnings passed on via friend of a friend - but now she has actually started the drug she's finding it very mild compared to previous chemo so I'm a lot more optimistic about that.

I still have some pain form the Zoledronic acid and I've agreed with my oncologist that I won't have that again.

I think you have genuinely found excellent ways to cope. My mental problems are impacted my the cancer but are long-standing and of a different origin. It really is the treatment and the impact that has on my day to day life that brings me down, rather than the diagnosis. But hopefully the worst has passed.

@MrsPnut what are you packing for your op?

@Acinonyx2 I am actually feeling better for knowing it is probably the Zolendronic acid that is crippling me. I was feeling so well, cycling 20 miles walking and weight training, and I am back to bed rest which doesn’t help the pain. I am taking para, ibu, codeine, amitriptyline and I am still in agony all over for no good reason. From what I read it should settle within 14 days in most cases and be less severe next time. It was just so unexpected and nobody warned me. The twists and turns of this illness are a constant surprise!
I think you are coping remarkably with your treatment given what you have told us about your mental health struggles. I am blessed with cork like buoyancy so I have no concerns for my mental health it sorts itself out.
DH has decided I need lots of Easter chocolate which is most welcome.

@MidnightLoo glad to hear you are addressing the denial but don’t feel you have to face reality all at once. Just peeping from behind your fingers a little at a time is quite a good strategy.
I have found when I meet friends I haven’t seen for a year and recount my exploits it sounds so appalling even I am a bit horrified. It makes me surprised I got through it without cracking up completely to be honest.
I was in denial through most of it I think. On my last hospital letter it said I had Radical Curative treatment. That explains a lot!
Right I am going to stomp/hobble off to my allotment and plant some Burgundine asparagus crowns that won’t be harvested for two years at least. There’s optimism!
Love to all xx eat lots of chocolate!
Top

@Acinonyx2

button up PJs

mastectomy pillow

drain bag

lanyard (for showering with drain)

blanket

slippers

dressing gown

towel

socks and bed socks

toothbrush and toothpaste

wipes

underwear including post surgery bra

mints and chocolate

Savoury snacks

long phone charger

Ereader

notepad and pen

clothes to come home in

water bottle

antibacterial hand gel

eye mask

ear phones

ear plugs

lip balm

moisturiser + vitamin e spray

squash

And possibly the kitchen sink as well!

Hi @MidnightLoo you are the same as me but I'm 51 with grade 3 triple negative Breast Cancer and have 3 more EC treatments before an op and radiotherapy. Big hug 🤗

Ladies, I'm having terrible repetitive dreams which are awful but my family are just laughing at me. Not fun.

My ex boyfriend I've found tonight lost his wife December 2019. We've now contacted on Facebook.

Trying to improve things round the house but DH never approves. Ho him, another day eh?

HC x

Thanks for the puppy encouragement/radiotherapy info @balkanscot, @HumphreysCorner, @Acinonyx2. We collected him yesterday and he's lovely!

@Miava Hope you're feeling better. I found the injections after EC the one thing that made me feel rubbish too, thankfully not needed after the weekly chemo.

I had the unexpected good news that the 'tumour' removed during surgery a week ago was just dead cancer cells, like @TopOfTheCliff described. I'm glad there's radiotherapy to make sure!

Best wishes to all.

Oh @bontopia I think we deserve a picture!

Have a relaxed Easter everyone. Wishing everyone a few moments of non-cancer-shit everyday x

@HumphreysCorner That sounds like the beginnings of a situation you have there - some mild discontent at home - old flame on FB. Take care!

@bontopia That's great news! How big was the dead tumour?

@MrsPnut that's a comprehensive list for reference! Did you get anywhere with the post-surgery bra hunt?

@Acinonyx2 I've got two in different sizes from the BCN but I still haven't got round to trying them on. Motivation appears to have deserted me at the moment.

The packing list was taken from someone else and amended by me but lots of people have had input.

@HumphreysCorner Be kind to yourself, it sounds like things are tough right now.

@bontopia Pictures please, that's the puppy tax.

@BadEyeBri How are things going with your treatment? I hope they've given you the strong anti emetics.

@MrsPnut going ok thanks. Feel like I'm permanently hung over but yes, all the anti emetics. I had to stop the levopromazine (sp) as it was making me really odd and sedated.

All the very best for you surgery. You are a force to be reckoned with x

I'm not as organised as some but I do read everyone's post and I always send my love and virtual support to all. Welcome to all the newcomers to the thread. It does only seen like yesterday that I was a newcomer I can't believe that year went so quickly at the time it felt like forever

I'm finding recovery hard mentally and spurred on by others I have contacted Penny Brohn to see if they are reopening.
I expected to slot back into my former life and carry on as if last year was an annoying blip. It's not like that though and I don t seem to be able to get off the sofa.It also doesn't take much to send me into a swirl of black thoughts.

I do try to keep busy and I'm trying to turn my backgarden into a healing peaceful area . A question for the gardeners out there : when would you put your runner beans in?

Fizzy I was sorry to hear your op has been postponed it must be difficult when you gear yourself up for it.

Bitoffun I hope the Crunchie mission is still on. I found out last week that my can get orange towels I made it my mission to track them down I'm hopeful for a Orange twirl Easter egg.I

Happy Easter all x

11days post massive surgery for me and I decided to trundle down to the local Co-op, about 100 yards, first time out. Expecting to feel a bit weak, the main problem I had a pain in my knee, which has had no surgery! Otherwise I feel I could have done quite a long walk.

@Lizdeflores I can well imagine the new anxiety of actually being off-treatment and out on your own! Now about those beans.

Are you going to start some off indoors? Then you could start in small pots now. I had all my veg on the go indoors in April last year.

Outside? Well, the weather is just crap. You really must be consistently above zero - so May - even Mid-end May for the first batch . I'm always impatient! I'm not doing many seed this year due to surgery but will do a few direct to garden and I am impatient to get them in. Other poster-gardeners may be more optimistic ....

@thereisonlyoneofme that's great that you are recovery so well

@Liz I am sorry to hear that you are struggling, that is tough. I feel that I have taken a mental battering already and I have a long way to go, so I can understand how you must feel worse, it just feels never ending to me. I think there is an expectation from other people to be absolutely fine after your main treatment is over, everyone keeps telling me, 'once your operation is over, you will be nearly finished' and I feel they expect me to return as the person I was a year ago, but I feel that person is long gone. I am really upset about my operation, I had geared myself up for next week and now have another two weeks to wait. At least I will be able to stuff myself with chocolate for a bit longer, hope you can find an orange twirl Easter egg.

@thereisonlyoneofme you're doing so well and giving me so much hope for my surgery. I do hope I feel as good as you have.

@thereisonlyoneofme (and @FizzyOrange)

Lovely to hear that you're feeling so well. It wasn't till after I had my gynae clear-out that I realised the tumour was actually the cause of a lot of minor niggles that I'd put down to getting older. Apart from my pregnant profile, I'd thought I was asymptomatic.

As soon as it was removed, indigestion, stress incontinence and getting out of breath just disappeared. You might find recovery plateaus after the first few week so don't get carried away! Those physios mean what they say about lifting stuff. The side-effect which lasted longest was backache when I had to stand still in a queue. Back doing all the work while abdominal muscles healed.

But it's a lovely boost to morale to feel better when you're expecting to feel worse. Fingers crossed for you Fizzy. Lord knows you deserve it after all your trials and tribulations.