Cancer support thread #74 - come in, we're here for you.

[Hippiechick162]

Welcome to the new support thread for anyone who has cancer, at whatever stage of treatment, is worried about symptoms, or is waiting for tests or results.

This is the place to worry, moan, ask questions, share experiences and good and bad news, and celebrate milestones!

If you've got a loved one with cancer then your best place for support is probably on the Life-Limiting Illness board.

Our previous thread iswww.mumsnet.com/Talk/general_health/3760336-Cancer-support-thread-73-come-in-were-here-for-you

Current members, please do introduce yourselves smile

Hi all. Had lumpectomy and sentinal node biopsy yesterday. It was awful- much worse than i thought. Ive had loads of surgery for other things before so thought i would be fine. I woke up from the aenesthetic making the most awful noise- all i can say i was howling like a wounded animal. I was in abslute agony and could barely speak. Turns out the had to fight for nearly 20 mins to get my breathing tube down because of my scleroderma my tubes are really narrow. Because i regularly take codine my pain relief was no where near enough so they had to top me right back up. Back up on the ward i was throwing my guts up and had to get something for that too. I couldnt even stand up but they had to send me home as i was at such high risk ftom covid. Now start wait to see if it has spread to lymph glands. Must admit feeling traumatised and awful this morning. Feel bad for moaning - im normally a really positive person.

Oh Redannie that sounds horrendous. Do you have support at home?
I phoned Macmillan yesterday and the nurse was so supportive. I actually had a good cry. First time for weeks. my dear.

Hi @derxa thanks yeah hubby is a total angel and im being waited on hand and foot. He even went out and got me ice lollies for my sore throat bless him.
Im sorry to hear youve had a bad time. Sometimes you just need a bloody good cry. Take care

Had my appointment today. Wasn't the news I was hoping for, nor expecting to be honest. Stage one endometrial cancer with a hysterectomy and ovary removal in a few weeks. I did cry, but staying positive. They reassured me it's very treatable and has been caught early so should be totally cured after the op. There's a small chance I'll need radiotherapy, but hopefully not. I'm in a bit of a state of shock though and we've had a few family tears.

@DivisionBelles my younger sister had exactly the same diagnosis as you 8 years ago. She didnt need anything other than the surgery and is now totally fine

That makes me feel much better @Redannie118

I feel better now I know what I'm dealing with. It was the not knowing that was horrible.

It’s so strange that we seem to feel better when we know what we are dealing with .
I think it’s the darkness of uncertainty that feeds the fear.
Sending support to all of you who are starting or waiting .
I had a phone call from the hospital this morning can I attend the breast clinic tomorrow for more fluid to be put into the skin expander .
Whoo hoo ! A morning out !

Hi @Trumpton wanted to say I suffer badly wth cold sores my whole life. Since using lysine from holland and baratt one tablet a day and I've not had one in years. Even if the lump starts forming I take one or two and the lump completely disappears. Try it. It honestly works better than any of the creams etc.

How's everyone doing? Sorry I've not been around. Ive had so much crap to deal with , but I won't bother re you all with my nonstop bad luck. On a good note though, I've finished chemotherapy today. I'm so happy. Just need to wait on a date for rads now. Hope everyone is well xx

@Nonotmenori Sorry to hear you are going through a crap time ...as if it’s not hard enough !
My patient DH is so grumpy with me now , it’s been a long year for us both .
I will get some Lysine again . I did try years ago and still got break through but maybe if I start straight away after the Aciclovir tablets .... ?
I am so glad I got them from the doctor as I still have the scummy patch a week in so who knows how bad it would have got !
I on off to hospital today so might see if I can get DH to stop at H&B for Lysine and also see if they have vitamin D3 .
I have been trying to get it online and failing miserably . Trying to spend time in the sunlight but not one for sitting out !
@DivisionBelles
As you say not what you wanted to hear but I had a hysterectomy when I was 35 due to prolapse and damage due to 3 very fast births and actually never ever regretted it . Once you are recovered I hope you feel better about it .
@Redannie118
That sounds horrible for you . I thought the node removal was the worst bit as well . I hope they gave you an exercise sheet . Mine is still on my bedroom wall to remind me to do them . I started doing mine in the shower as soon as I could as I found the warm water helped me relax into them .
@gillmoregirl
I never had to take the prep when I was having bowel problems . I was always given an enema on the ward . But yes ! The ring of fire !

I am 3 months post chemo now , still having Herceptin , probably until November .
9 weeks post mastectomy with skin expander ( changed at last minute from diep reconstruction .
I am planning to keep shielding For the foreseeable future as we have a large garden and I can get out for walks and see no one at all .
Chins up everyone ! Keep on keeping on !

@Trumpton Are you a member of Costco? I've bought another 600 vitamin D online last week so they're normally in stock. If not and you can't get any I'm happy to send you a couple of hundred in the post? Obviously I'm not allowed to the post office, but I'm happy to send in an envelope. Let me know. Hope the cold sore goes there's nothing worse than them. I started getting one the other day. Think I bite my lip and the lump came out so I double doses on the lysine and it went within two hours.

I'm bored with the bad luck lately. It's non stop as I said to my mother surely the luck has to start turning around at some point so I'll just carry on riding the wave. Today though I'm moving to another new place - don't ask too long, but terrible landlord. And I've been without clean running water and a washing machine for three weeks now. Oh I found out myself and a couple of hundred of my colleagues will most likely be losing our jobs (sigh) Honestly if it wasn't actually all happening to me I wouldn't believe the stories. Still, we keep on smiling good things shall happen and then dark days shall pass.

@Nonotmenori
That is amazingly kind of you . I live off shore so not a great choice of shops .
These are the ones I ordered from Amazon due today ( hmmmm ) . May I pm you if they don’t arrive ?

Yes please do. I have plenty so it's no bother. And don't worry, Mumsnet can verify I'm not a weirdo I've been on here over ten years I've done video work for them and they've my address photos and everything else.

@Trumpton it's these ones I've got

Oh thank you . They look perfect .
I have sent you a pm .

Had my second session of RCHOP on Tuesday (3rd chemo - so halfway through!) - it was quicker than my first but only by a couple of hours. But they've doubled my dose of steroids - so I'm totally on edge and not sleeping. They gave me more sleeping tablets when I was there for bloods today so praying I get a few hours tonight.

The countdown is now on for the shitty cytarabine chemo session in 2 weeks time :(

Has anyone had any experience of their tastebuds changing? I noticed it more so after the cytarabine - a lot of food that I love now taste of metal. I'm now eating a lot of tropical fruits as bog-standard apples/grapes taste foul. (Also, recommend Nulli Coconut & Mango ice cream too! )

In other news I have a snazzy new trilby to protect my head in the sun. Small things keep me happy at the moment.

Hope everyone is keeping well.

@DivisionBelles, I has a total hysterectomy plus BSO for a form of endometrial cancer last year. If you haven't been though menopause you will experience a surgical menopause if they remove your ovaries.

Mine was grade 1 stage 1 and I haven't needed any further treatment. I hope all goes well for you.
If you have any questions, feel free to message or send me a PM.

@catnidge that's reassuring, thank you. My consultant has said it's stage one, but they won't know the grade until they take it all out. I expect to be having my ovaries and tubes removed as well so will be going into surgical menopause, which I'm not looking forward to as apparently I won't be able to have HRT.

How did you find recovery after the op? Mine will be laparoscopic so hopefully will only be in hospital for one night. I do an office job, and am working from home at the moment, but not sure how long I should expect to be off. Work is pretty stressful at the moment - I work in travel - so if there is one small silver lining to this cloud, it will be that I can escape that for a while!

@DivisionBelles, talk to your consultant about surgical menopause. I too can't have hrt. I take calcium, magnesium, B6 and an omega supplement. I have also increased the amounts of nuts and soya in my diet on the advice of my consultant. However some supplements are not safe to take for women who have an oestrogen driven cancer so do check first.

I had some very rare complications so ended up off work for 10 weeks. Be guided by how you feel, you'll probably be signed off for 6 to 8 weeks.
Take it easy after surgery and gradually build your strength back up. Do get moving as soon as you feel able but defintley no strenuous sports for some time.

Good luck to you. I found not knowing the hardest part.

@Redannie118 Gosh that sounds tough! You have the same diagnosis as me...invasive ductal cancer. I hope you are taking it easy and taking plenty of pain relief.I had an awful experience with anaesthetics 3 years ago getting a rotator cuff tendon tear repaired in the same hospital. So I got amazing anti nausea and pain meds for my surgery this time and it worked very well. I got a seroma under my arm where the node was but it got drained and after that it felt much better. I’m having regular radiotherapy now as the high dose radiotherapy wasn’t recommended due to the very small seroma remains, fear of lymphoedema. I’m driving myself there and back and feel well, take a nap in the afternoon. I am gaining weight despite being careful, so think it might be Letrozole. Anyway hopefully the worst is over for you..💐💐Please let us know how you are doing xx

Hi.
I found a breast lump 4 weeks ago, Invasive ductal carcinoma.Triple negative.
Had wide excision and sentinal node biopsy on friday, op went well.
been achy and swollen, really bruised.was expecting all that.
today as time has gone on i'm having little stabby pains. Had a prod and don't think any hardness is developing. I have cocodamol 8/500
which i've taken.
Any tips to ease it? warm packs/ cool packs ?
someone recommended this thread but i was scared of coming and reading your stories. I get the results in 2 weeks, then I have to have about 7-8 cycles of chemo.They have warned me of possible furthur surgery if margins not clear or nodes affected as well.
I am a nurse, i work in a hospice, none of this is making me any braver. They have said i have an excellant prognosis.I am terrified.
I live with my 19 YO son, he has aspergers and I worry how seeing me go through chemo will affect him. I have a DP, we don't live together, he is not he most sensitive/thoughtful but tries his best.my work sick pay will run out before chemo ends.My head is battered.
I do have good friends, but i am the one who handles everything well, helps everyone else out.

@happyjack12 I am so sorry you are in this hard place. I don't have personal experience of breast cancer, as you'll have seen there are many very knowledgeable women here who can support and advise you. Sending good wishes to you and your DS.
I want to respond to other people but will wait till I can use another device and remind myself where you're all at. Hope most of you are sleeping!

I do have good friends, but i am the one who handles everything well, helps everyone else out. Do reach out. Not the time for the stiff upper lip. Good luck

@happyjack12 Sorry you are here! There's a couple of us on the thread with TNBC. I'm IDC stage 1. Diagnosed at the start of March. I've had a lumpectomy with SN removal and am just about to have my third chemo. I've also got a 1 year old DD so life is very challenging!

Re the pain, do the exercises they gave you religiously it will help. Plus gentle massage of the scar area - finger tips in a circular motion. I tend to do this twice a day usung vitamin E cream. The pains/aching will pass.

Feel free to PM me.

@happyjack12
The stabby pains were explained to me as the damaged nerves repairing themselves .
Are you able to shower yet ? I wrapped my chest in cling film to have a shower !
I second the exercise , exercise advice . I have been very lucky and had no cording or lymphoma.
Keep an eye open for seroma after the lymph node removal .
If you need stronger painkillers then ask for them . Don’t try to be a hero !
Look at Jen’s Friends on FB . They will send you a heart shaped pillow for under your arm ...that was wonderful for mine .

I'm sorry to see so many recent arrivals to the thread. Hello and welcome, and big commiserations, to @DivisionBelles and @gillmoregirl.
@Trumpton how was your trip to the hospital? The excitement of going out! Is your skin expander more comfortable, and how's your cold sore?
@InOtterNews it seems like lots of treatments can change the way things taste, it's a pain. The thing that took longest to be OK for me, after chemo, was orange juice, in fact I'm still not that keen on it.
@Nonotmenori I wish you much better luck with the next move! And with life in general!
Thinking of @Robstersgirl, how are you doing now? Have you started chemo?
And a hello to @BitOfFun, hope you are reasonably OK atm.
Plus of course very good wishes to everyone here, especially those who are struggling with treatments or waiting for test results or treatment plans.