Cancer Support thread 88 - virtual rage room currently empty, virtual collective afternoon tea - all welcome!

[LemonDrizzle10]

New thread

@CoachBeardsJane Good to hear and excellent tip. I hadn't thought of a mastectomy pillow. I have been propping my arm up on a regular cushion to stop my skin from sticking together. No use of course when walking around. Lovely of you to offer to donate yours but I can see I can get one for under a tenner online, so no need. This may well make the next few weeks more bearable.

No worries! The ones with the cool packs are nice and I found the pressure really helped me

Thanks for the spoons folks! And @Fantasea I know I should be more grateful for thorough treatment and the good prognosis it gives me but it’s hard!
I spent a spoon going out to meet friends for coffee. Two of them really wanted to hear how I was coping and made me feel better. They think I should be a motivational speaker when all this is behind me. It’s nice to be “seen “ by friends sometimes.
Resting now. I just washed up yesterdays dishes so now in return DH can make lunch.

Talk by Top: When you walk through the valley of death keep going! And other tips for surviving bad times

My mini balloon tower made dd smile😊 & now there's somewhere better than in front of the tv or scruffy (it's not that bad but needs a tidy up) garden. Just need some furniture shifted so I can stand far enough back, later on.

@dotty2 glad she's had a lovely prom and @lucysmam hope your dd enjoys and the prep isn't too stressful!

Wasn't a thing in my day - but I remember my nieces proms and how much of A Big Deal they were. Both are lovely girls but very different in character so one was much more stressful when the other but they both have wonderful memories (one after a total meltdown over how she looked hideous and her makeup/tan/nails/dress were all wrong - she came back declaring it the best night of her life!)

@TopoftheCliff so glad the spoon expenditure was worth it!

I haven't been terrible fatigue wise but have had to accept that a busier day will necessitate a quieter day and perhaps a nap the following day. I've been fighting this until DP pointed out that before treatment when I was in full health I was not adverse to a wee doze on a weekend afternoon....and stop being a contrary bugger when I'm recovering (well, one more to go but the worst bits have been done) from quite an intense treatment.

Just diagnosed yesterday with breast cancer that has gone to my lymph node under my arm. Got to tell my son today. Feel rubbish.

Hello and welcome @1Strawberrycat . We're all sorry you find yourself here, but you will find a warm welcome somewhere in between the fake tan, cake crumbs and fear of death. All of life is here.

Lots of us on here have breast cancer with lymph node involvement, me included. We are all here for practical advice and if you need to vent. How old is your son?

Sorry to hear that Strawberrycat and welcome. That's the same as my diagnosis. We are also big fans of cats on here, I have a Maine Coon tabby cat who is about 1.1 metres now, so if you are up to a picture we would love to see them. The cat has helped me hugely.

@1Strawberrycat welcome to the thread nobody wants to be on. Have you had the details of your BC confirmed yet? Once you know the small print stuff and have a plan it will seem more manageable. I have had one breast cancer with lymph node spread on the right side and one without spread on the left side. Both nasty aggressive little bastards so I got the full spectrum of treatment twice. Have you got to have some further scans to get more information? It’s all terrifying at the beginning but gets easier. Sending waves of calm x Top

Lovely to hear about people's DD's proms! So much fun to hear it from parents of daughters (I have 3 DS). @TopOfTheCliff what a brilliant idea to host the party in your own garden.

@lucysmam

That's sort of amazing your hair is growing on Paclitaxel! Maybe others have that too, but mine fell out completely on EC chemo - which I had before starting Paclitaxel - and didn't grow back at all until about 2-3 months after I stopped Abraxane (a type of Paclitaxel).

Hope everyone enjoys the prom @lucysmam!

Welcome to new posters but sorry you’re here.

I think I have decided on treatment now - going to go for APR surgery for anal cancer rather than go through stoma plus chemoradiotherapy and then possibly end up with the APR anyway. The surgeon seems to think people with Crohn’s are resistant to radio so don’t see the point in having that and then possibly needing the surgery anyway. It’s radical and I am scared.

Hello can I join in?
I recently found out I have breast cancer again 2 years after I was discharged.
I am having a mastectomy with DIEP flap in August. I'm 44

@beatingtheodds

I am pretty certain Epirubicin is in the same group of chemos as Doxorubicin, both anthracyclines, although from what I've read online, Doxorubicin is even worse for the heart than Epirubicin. I imagine your medical team are monitoring your heart closely because of the Doxorubicin. You are absolutely not alone in suffering heart problems on that chemo, and I hope so much that the heart treatments help you.

Yes, actually my heart has calmed down noticeably over the months and with the two blood pressure meds: I finished Epirubicin 9 months ago now. I am still having 3-monthly heart echoes because the two immunotherapies I am still on can also damage the heart, and the echo LVEF result has recently gone up several percent points, which is good. I can also feel that it's calmer than last summer when it was pounding away in my chest, ears and neck, and I had sort of deep trembling sensations. My feeling is definitely that the Epirubicin did that, and the doctors thought so too.

The way they are administering your chemo is much, much more brutal than how they did mine. Mine was the very common method of into my hand, and later on a PICC line. I have breast cancer, a type that is considered very aggressive for breast cancer (stage 3, grade 3, Her2+++, hormone negative), and my prognosis on diagnosis was poor, but mine is clearly a significantly easier treatment plan than yours, by far, and a much more accessible part of the body to treat.

I'm so sorry you're having to go through all of this, it's so unfair. Bloody asbestos, it has caused such widespread and awful suffering and misery. You are so young, I was thinking about you a lot yesterday after reading your post.

I think catastrophising is a natural response; certainly, I really understand. One good thing these days we can hold onto in our thoughts is the amazing speed of new treatments, stuff like immunotherapies, targeted therapies. I wonder if there are any already or coming up for your type of mesothelioma.

I remember reading a post by another member of this thread who also has mesothelioma. I have tried to search to find out their name, but didn't manage. There are so many people here with breast cancer, and some with other fairly common cancers that I can imagine having a rarer and very aggressive type of cancer could feel isolating. I'm happy you found this group.

@TopOfTheCliff

Sorry to hear the total stress you had and I'm wondering whether your hospital pharmacy could maybe send your medications to a pharmacy nearer your home, or at least one where parking is much easier. You absolutely shouldn't have to go through that horrible stress to pick up your chemo tablets. I suppose they might not be allowed to do that with chemo though?

Parking at hospital is so bad here, we gave up and now book a place on people's driveways using the Just Park app. But there are lots of houses and flats near our hospital that makes that possible, I know that's not always the case.

Hi, here to join the cancer club. I found out last week I have squamous cell carcinoma in my throat and lymph node. I’m still undergoing tests for staging etc but I’ve been told likely treatment is chemoradiotherapy. I’m so angry about it. I dont have a single risk factor for it, it’s been caused by HPV, I’m only 36 and I just had my second baby, he’s only a month old.

Welcome @booksandchoc and sorry you need us. First off do have a good session in our Virtual rage room as we all understand the fury and disbelief that you are going through. Shout cry and smash things and nobody will turn a hair. My BCN keeps rolling her eyes when I tell her they need a Rage Room at the hospital. Do you have support while you are being treated? Two littlies will be hard work.

@SummerCycling what an amazing post - you covered everybody pretty much.
My hospital would deliver the drugs by courier if I wanted but I previously quite liked the outing to get them. It’s just that I detest them with a passion and hate taking them. 430 done and 690 left to go!
@beatingtheodds i have had two courses of Red Devil which is the epirubicin. It made me breathless but I recovered well after each course. There is a lifetime limit of 900 doberries before your risk of heart damage gets serious. I’m at 720 and keen to avoid more but my heart is fine now six months on.

Im going to risk using a few spoons now to cycle to a BBQ. Ebike of course.
love to all X

@booksandchoc i am sorry to hear of your diagnosis - I also have squamous cell carcinoma but it’s anal cancer. I’m so sorry you have found out at what should be such an amazing time. I hope you and your baby are doing well despite all this?

@TopOfTheCliff will lend you a spoon or two to cycle, very jealous of your e-bike as well!

Welcome Fuckmyliferightnow so sorry you got breast cancer again, presume that's a new one rather than a secondary if they are doing DIEP.

Welcome booksandchoc

@Silkierabbit yes it's a local recurrence which has been pocked up early than the last diagnosis. Nervous that surgery will reveal more, I don't trust my luck at the moment.

@booksandchoc I'm sorry you're going having to deal with this. I understand the anger.

Can anyone talk me down here? I am 48, going through a very acrimonious divorce from husband who cheated on me with prostitutes for years, I found out last June, diagnosed last September. Chemo has been hell but now I am having surgery on Monday and I am in bits. That’s my breasts, gone and any remote chance of finding love again as an older woman also gone. Meanwhile me and dd2 bumped into him in the supermarket with new squeeze who is inevitably much younger and it is so fucking unfair

Hope surgery doesn't reveal anything more Fuckmylife

bringonyourwreckingball Hope surgery on Monday goes as well as it can. Sorry you had such an awful husband, I wouldn't worry about the younger partner as he likely do the same to her. Re finding love again a decent man won't care about your breasts that much, he will just care you survive, that's all my husband cared about. You can also have implants or DIEP though when not immediate the wait can be a year, might be worth checking that out and explaining how you feel and see if there's anything they can do. I admit the thought of finding love again would be terrifying to me too, am a similar age and I might just have lots of cats instead. I would just take it day by day for now, focus on getting through surgery (might be worth asking if any chance of immediate implants) you ex isn't really worth wasting any of your energy on. Sending love and hugs. Feel free to PM me if you need somebody to chat to.

Ah sorry @bringonyourwreckingball - you've had a shit time, but he'll always be the tosser who cheated on you and will probably do it to her too, poor woman. I'm mid 50s and I'm single, XP has had a number of partners, and lives with somebody now, but I've been too busy bringing our child up. I also feel it's a remote possibility that I'll be in a relationship again, but I do have a friend who's been diagnosed with incurable lymphoma who started a new relationship since, so there are possibilities however it feels now. It is very unfair though, going through cancer alone is tough

I've been doing a lot of googling and found that granulation of scars after hysterectomy is really common, so still hoping that that is all it is, as the GP thought was probably the case, and not a recurrence. Just waiting for an appointment now. I've been pretty distracted the last couple of days and I've not done much work.

The prom talk reminds me of DD's prom four years ago, the school put a marquee in the field and got a food van and a non-alcoholic fizz van and it was all done as a (very posh) festival. It was fantastic, the weather was really hot as well. We just used to go to the pub on the last day of term, but then underage drinking was much easier then, especially for girls.

@bringonyourwreckingball I had the awful divorce from 2016 to 2021. Ex still rears his ugly head now and again on the Mumsnet approved ‘Family Wizard App’.
Just be relieved that he’s not your problem anymore, sadly we know what the next women have got coming. I can’t be arsed with men anymore - I can take my own bins out!

Hi all.

I was given a diagnosis of early dcis today and fibroadenoma breast lump. With some queries they want to look at.

I need an mri to complete the diagnosis so they can decide next steps. Either lumpectomy or mastectomy and radiotherapy.

I'm on hrt and devastated as that's been so helpful. I finally got my brain back recently. I was really struggling prior to that. Mid 40s two children.

I'd really like to know if the meno symptoms eventually stop and if there are other treatments for them? I'm also hypothyroid to add some extra issues.

I'm wondering at what point I may have to start weaning off hrt? They said don't change anything yet. Surgery currently booked for august.