Cancer support thread #73 - come in, we're here for you.

[Trumpton]

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 is HERE

Current members, please do introduce yourselves smile

Gahhhh have just had chemo cancelled for tomorrow. Which a part of me is relieved about cause the thought of feeling so rubbish and having chemo on top made me want to cry. But I also just wanted to get it over with. They said if I haven’t heard anything about new appointment by Tuesday then to call up again.
Have CT next week on Friday. So scared that they will say I need more rounds.

Bridget congratulations on getting back to rowing. Seriously impressed!

Squiffy commiserations on the cancelled chemo. The countdown of sessions becomes so important that delay feels like a real set back. Good luck with the CT scan

Notmenori I hope your BF doesn't let you down tomorrow or if he does that you have someone lovely to go with you. It is hard enough to go through all of this without having a partner you can't rely on.

@digerd yikes 43kg!! - i’m nothing like that small, 54kg today with clothes and boots so probably 52 really. i’m glad you’re up to a better fighting weight now. having had my landmark treatment (15 of 30) today i also had a clinic appt where they’ve given me the fear again as they’re taking blood and organising yet another scan to look at a possible cause for the sickness and weight loss, as the radiotherapy shouldn’t be causing it. i’m sure it’s all psychological but as i’m discovering everything these days makes me worry. my cancery area is not really on the spine but the bones at the back of the pelvis, between the spine and the hip. the sarcoma nurse said today that it’s likely to be painful for a while as a result of both the surgery and the rads but i’m inclined to think it’s going to be forever as they’ve cut out a good old chunk of muscle and connective tissue - there’s now just skin over bone (with seroma currently in between).

@Squiffy01 thanks - i don’t think they’re that worried about the pain. they told me today to wear loose summer dresses and no knickers but i’m absolutely freezing all the time so it’s not really practical.

@daisypond hello and i’m sorry you’re here but talking to other people can really help. i found the waiting is the absolute worst, once you have a diagnosis and a plan you may well feel better.

@Skap he's coming with me. I do have a friend on standby. I'm giving him his final chance. So balls in his court now. There will be no more chances if he lets me down tomorrow. I know I'm an idiot and should never have got involved, but right now isn't the time for any battle other than cancer. Gutted my family are abroad.

Hugs to all those who need it xx

Keeping everything crossed for you notmenori.

Daisypond hello and welcome, though I know you don't want to be here. I was very recently diagnosed with early IDC. I had no lump either it was just picked up on a mammogram. It could well have been there for another year or more before I might have noticed anything.

Ladies on here are so lovely, am so glad of this thread x

Thanks @peaceanddove How are you getting on? Have you got a date yet? Sorry if you've already answered that.

@Bloodybridget Thanks for your words of sympathy. Glad you enjoyed your coxing.

@ DaisyBD I was your weight at 54-56 kilos until Oct 17. When I began the rads in May 19 I was 50kilos but towards the end I weighed myself every day and the last I remember I was 48 kilos. After the rads finished I became more ill with the pain down below and could not eat much or even sit and lost 5 more kilos.
However, the weight is now all round my middle with no bum, leg or arm muscles. DD said she thought it was just me getting old.
What you have had done sounds horrific, though. Are you on special medication ?

notmenori yes, my surgery is on Tuesday. I'm basically getting a breast reduction & lift, which I've wanted for years, so silver linings and all that.

But I'm absolutely torn about whether to continue with my HRT, which is the only thing that cured my awful peri depression/anxiety, or not???? I have tried twice to come off it, and both times ended up in that awful black hole within a week

My surgeon recommends I stop it, but acknowledges that my symptoms without it are worryingly severe. Just so conflicted. It's terrible.

How are you feeling? x

@DaisyBD What a gruelling regime of treatment, no wonder you are losing weight.

@peaceanddove I presume your breast cancer is not hormone positive or there wouldn't be a choice of continuing HRT? I must admit I struggled through menopause without HRT because of the perceived risk of breast cancer, and hey ho I got it anyway - hormone negative but HER2+.
I looked at your links to those books. A bit weighty and expensive and since the start of chemo my concentration span has shrunk to near zero. I did however follow a link to a podcast interview with Michael Baum and it was fascinating. His comment about risk factors was very interesting, essentially there are two big risk factors for breast cancer. One is age and the other is family history. Neither of which is within our control. All other "risks" are so tiny as to be statistically insignificant.

So radiotherapy finished. 9 more months of Herceptin. I have an appointment with oncologist next week, only my second since being diagnosed in July. There is a severe shortage of oncologists in this area and 99% of contact is with CNS. I have such a long list of questions for him that I will need to prune it I think.

Can I ask those of you who are already undergoing treatment how you are managing with work and how supportive your employer is? I work full time with a three-hour commute in total. I’m the breadwinner. DH was diagnosed with cancer last year too.

Skap actually it is ER positive, very strongly! I chatted to my BCN and she told me not to beat myself up about taking it, and that quality of life is so important. When I mentioned the information in Oestrogen Matters e.g prognosis for women taking HRT when DX with early IDC is better than in women who don't take it. She was speechless.

So sorry there are so few oncologists in your area, it must be so frustrating for you x

@daisypond I am retired but honestly could not have worked because my chemotherapy was weekly.
Treatment varies so much as there are so many different varieties of breast cancer. Almost everyone has surgery in some form. The question of chemotherapy and radiotherapy depend on the type of surgery and the type of cancer. My cancer was tiny only 7mm but because it was HER2 positive I had to have chemo as well as radiotherapy.
There are some on this thread who have 3 weekly chemo and have managed to work part of the time. Radiotherapy has not been difficult for me though it is for others but it takes up half a day for three weeks because of the commute.

@NaomiFromMilkShake how are you doing?

@peaceanddove another one of those infinitely small risk factors then? I know many ER+ people go to extreme lengths to avoid hormones.

skap it's quite possibly only a very small risk. I have done a lot of research and reading on the subject, and so far there is no evidence that taking HRT, after a BC diagnosis, increases the risk of reoccurance!

I also discovered that before Tamoxifen, high dosage estrogen was the gold standard treatment for stage 3 and 4 breast cancer! Who knew???

@daisypond I have been incredibly lucky in having a supportive employer, both in terms of really generous company policies on sick pay and because my boss’ sister has inflammatory breast cancer too so he knows how gruelling the treatment can be. As soon as I told work my diagnosis they told me to down tools and focus 100% on my health. I’ve had ongoing support from a designated person in HR as well as my immediate team.

My consultant signed me off until my treatment is fully completed (chemo then surgery then rads), but I got the impression he wouldn’t have done that if I’d only been getting statutory sick pay. I’m very glad he did, though, as with the side effects from 3 months of chemo and counting I can’t imagine how I could get to the office, let alone be any use once there!

@daisypond my employer has been amazing. if my radiotherapy wasn’t so time consuming i’d probably be able to work part time but i’m not really managing anything. my boss is paying for taxis between the hospital and where my parents live in south west london (where i can leave my car) and i’m getting full pay. everyone at work has been lovely in fact.

@digerd i’m not on any medication at all apart from anti sickness and anti diarrhoea medicine now. treatment is surgery and radiotherapy only as my cancer doesn’t respond to chemo. i’ll be interested to see how the surgical site looks and feels once everything is healed up and fully recovered. i have wondered about reconstructive surgery but i suspect it’s not an option as it would be purely cosmetic and it’s not as if my arse is out in public much anyway. i suppose if it still hurts to lean on afterwards that might be a different matter.

Well today was my last day before surgery. I'm a school teacher so half term. My lovely boss cried as she wished me good luck, she has been amazing and I would class her as a friend as well as my boss. She has bent over backwards to ensure I don't have anything to worry about. Nervous about surgery but feel glad it's moving forward. Thanks for your kind words @Bloodybridget! Hope everyone is getting the support and treatment they need xxx

bridget its just 2 different dyes through a canula then lots of photos of the back of my eye. Very headache inducing.
Now the wait for the results!
My pee was luminous! Very entertaining:)

Have spent the afternoon in a&e with ds2 who fell at school. He's ok but is going to have some spectacular bruises/black eye.

hippie you are in my thoughts...good luck for your surgery and sending lots of love to you xxx

My eye is worse. I can still see but it's deteriorating. I'm also getting visual hallucinations in that eye which worried me sick until I googled it! (Its the brain trying to make sense of what the eyes are telling it)
Unpleasant though.

Hoping you are all ok and avoiding all te horrid bugs around atm.

Xxx

Naomi checking in.
Not too bad.
Skin peeled from my hands at a shocking rate, it has slowed down and is now just annoying. New skin doesn't have full finger prints so back to passwords on the phone. 🙄

Nails are well on their way to being buggered.

I have managed to keep a very fine covering of hair.

For those old enough to remember, I keep saying that I am like comb over man from the Hamlet advert. 😂

😂😂😂😂

I use the wig in the house, but I am quite happy to be like that in the house. Radio starts February 24th.

Hi @yoikes, how long for the wait? Keep thinking about you but didn't want to mither. I had a scan yesterday...made me feel like I peed myself! So that was interesting lol.
@AnotherTroyforHertoBurn I'm chuckling here about the hamlet guy...you're far more fetching!
@DaisyBD and @Piggles39 nice to hear someone else has a good boss! My boss' mum had breast cancer so she's been there with her and was pretty similar I.e. you and your health come first.

hippie i had one of those a few years ago...it really does feel like you're peeing yourself!!

I had 27th as the date in my head for your op? I obv made that up! Is it next week?

I just want to know what the hell is wrong now...I've now had 3 OCT scans, a US scan and an FA this week. I can't complain really as the appts have all been urgent 2 week ones but...I hate the limbo feeling.

@AnotherTroyforHertoBurn Glad to hear you're not too bad. Did you have the burning skin side effect Of taxol? Nothing much helped mine but it did recover very quickly. Yes I expose my full hideous post chemo hair at home. Fed up of the wigs which give me a headache so I stick with hats.

Hi @yoikes, no it is the 27th but school finished today for a week and I have my pre-op and lymph node injections on the Tuesday and Wednesday so I'm not in. We go back on the Tuesday. A week to spend with my kiddos because they're not old enough to be allowed on the ward so I won't see them until I'm I'm discharged. You've been stuck in limbo for so long now, I admire your strength.. I'd be going insane by now! X