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

[LemonDrizzle10]

New thread

Hi all, please can I join?

I was diagnosed with mesothelioma at 23 (gulp) I've had the majority of my surgeries and chemo now but it's one of those I'll always have, it just remains stable until (if) my body decides to fire up again. (Asbestos cancer, super unlucky.)

Most people with my type life 2-6 years after surgery and I'm on my 5th year. I don't really want to think about the future or what's going to happen. I have a beautiful 2 year old daughter and a fantastic husband who keeps me going.

I've got my bi-yearly MRI next week to make sure everything is stable and I'm so nervous as my tumour markers have been high again. Not as high as when I was covered in tumours but they've gone up so was looking for a bit of a safe space on here. I'd love to join for tea please!

Sending so much love and strength to anyone and everyone in here. Thank you so much for the thread.

Also, has anyone on here had cisplatin and doxorubicin chemotherapy?

I've had an awful lot of it, and they're thinking it's caused my heart conditions that seemed to come out of nowhere last year. I now have SVT & LQTS awaiting ablation surgery and possible pacemaker. They seem to be putting it down to my treatments. I know it's a long shot but interested to know!

@beatingtheodds Glad you've found this thread - I've found it a great support. There seems very little that someone on here can't empathise with - the nerves before tests affect us all.

Look forward to seeing you for tea on Friday!

I’m really pleased to hear you have the PIP for your son and I hope he’s doing well. I’m currently in the Uk just a few train station along from AGreatUserName and according to my dad I brought the rain with me after a 6 week long dry spell.

My son thinks I’m in Beirut with the Lebanese side of my family as telling him I’m in the UK and him no longer being well enough to travel is just too heartbreaking. I don’t usually come in the summer though as I like to sit it out with him but my family who did travel this year asked me to come for a few weeks so I decided very quickly to do just that.

It’s EID today, the first time any of us have ever been away from home for it and somewhere along the line we’ve lost the takeaway we bought from Wagamamas for our Eid dinner. It’s going to have to be yesterdays leftovers instead.

I’m sorry you had cause to find us. But you are very welcome. And yes, the terror is very real and something we can relate to.

I'm here for 2 reasons, my oh has leukaemia, he's had it for 12 years now and so I think I've become a little blasé about it. It's something we have lived with for a long time. A month ago my mum was diagnosed with stage 4 cancer which has spread and she only has months to live, I hate cancer

Hi Looby, I was on the storm threads with you in the run up to DH passing. Sorry to hear you're also facing it with your mum, life is beyond cruel sometimes. I was just really getting back on my feet and properly living life again after my husband passed and then was diagnosed myself. It feels like there's no escape and that me and cancer are horrendously intertwined.

Welcome beatingtheodds and hoping you can keep beating the odds for years to come. Didn't have dox, my oncologist said there was a move away from it because of heart issues but said I could still have it if I wanted, wasn't really selling it so I did Pax. Can you change chemo, weekly Pax is a better option for heart if that's an option.

Lovely to hear from you Polly and hope you have a wonderful time in UK. Sorry your son is struggling. My daughter is doing so well, predicted A stars in her A levels, Oxford Uni open day today, doing very well at the 2 jobs she does, she led a boating bat tour last night, boyfriend, goes abroad by herself, amazing gcses during my chemo. But son fell apart. He's out of hospital now and off section and we just got pip for him which is 129 pounds a week to mid 2027 which really helps. He's very easy for us and fine when we go out swimming but so terrified of anyone but us so won't leave home. This week we had two home treatment people and he let them see him which is a start. Also in talks with a great school for September and that has cheered him up, he went really low when I had cancer and at the same time his school went can't meet needs and no other school could be found as LA would not pay. He is eating and drinking well. He might be put straight onto A levels, we will see. He is watching films and ipadding here and cuddling pets. He changed his bedding other day and is OK with visitors for us.

Evening all...thank you for starting the new thread and hello to old and new!

After my chemo cancellation earlier in the week due to drug supply issues, they managed to get hold of some today and so my treatment went ahead. Steroid regime all a bit cocked up but apparently it won't make a difference (which begs some questions that I can't be bothered to ask/answer!) but very happy to have another treatment ticked off. Assuming I feel ok, I have a Look Good Feel Better session tomorrow morning which hopefully will boost some confidence as the bald patches are growing and the Gollum look is being well and truly channelled atm.

@lucysmam

Great you're tolerating the Paclitaxel well. Did you ever have EC chemo or something similar to that? I'm asking because I had 4 cycles of EC (Epirubicin and Cyclophosphamide) before switching to Paclitaxel, so just wondering really.

Hope your DD enjoys the Prom tomorrow!

@TwigTheWonderKid

That's great news about your lungs and liver. Fingers crossed your appointment went ok today.

@bringonyourwreckingball

Good luck with your surgery. I hope it all goes well and you recover quickly.

@TopOfTheCliff

Here's to 5 October! 🎉

@Brunonononooo

Sausage rolls, yummy! Haven't had them for years, but they're perfect for a tea party aren't they.

@Silkierabbit

Great news about your DS's PIP coming through!

I agree with you, we can enjoy our tea party with Portuguese tarts, chocolate, scones and cakes 🍰🍫☕ People who say sugar causes cancer grow seem to apply that claim to all sugar and all cancer types, but I also read that the brain needs glucose or it can't even function at all, its neurons break down etc, so I'd rather listen to the oncologists' and cancer nutritionists' advice than non-medical people who issue blanket statements like 'sugar causes cancer' or 'eat xyz' or whatever. Also, I doubt those people even realise how many different drivers there are of cancer in each body part, genotypes, pheotypes, etc etc etc.

@CoachBeardsJane

Wow, that's brilliant news the immunotherapy has got rid of almost all the tumours. Good luck on Friday.

@lookingforadvice21

Sorry to hear you are having such a horrible time on chemo. I did too, I suffered a lot and really dread ever having to go on it again (currently on immunotherapies) so I understand completely how you are feeling. My treatment plan started with 4 cycles of EC Chemo then 12 weekly infusions of Paclitaxel. I got to know A&E quite well during that time, and luckily, the Drs there were great, but it's not fun in any way at all is it. ((((hugs))))

I really hope you manage to cope and that you get a good response to chemo. Fingers crossed for your PET scan, do let us know.

@ClashCityRocker

Good luck with your final brachy. How long will you have to wait to find out how effective the treatment has been? Keeping my fingers crossed

@SierraSapphire

Happy 90th birthday to your Mum! 🎁🎉

Good about the scan, but sorry to hear about the bleeding. I hope the appointment comes through asap and that it's reassuring news.

@dotty2

So sorry to hear your DH's diagnosis, your family is really going through horrible things. I hope he has a good medical team and that his body responds as well as possible to the treatments.

I know what you mean with the fear of the cancer returning considering we have a high risk of it happening. I think my MDT were surprised they didn't find metastases when I was diagnosed last year, my cancer was so fast growing and locally advanced. I also fear long term side effects of the chemo, radio, immunotherapies etc. We just have to somehow try to cope with that worry, but it's very far from easy isn't it. I also often feel a sense of dread. The only thing I gained from counselling was trying to find something that gives me joy each day, I do like that idea and hope to manage it. But yeah, it's really really tough isn't it.

@Loobyloo68

So sorry to hear the news about your Mum. I absolutely hate cancer too.

@beatingtheodds

I'm happy to see you found this thread.

You asked if anyone had been on Doxorubicin. I wasn't on that exact one, but a closely related chemo called Epirubicin for 4 cycles (which sounds as though it's a lot less than the number of cycles you've had), and it did affect my heart somewhat, although less than what you've been diagnosed with.

My heart echo showed a significant drop in LVEF and the team said that's when they need to start cardiac support. The support for that is apparently usually ACE inhibitors but I started on two other different types of blood pressure meds instead. I think the rubicin chemos are tough on the heart.

I also had a very fast heart rate at times on Epirubicin, that meant an A&E visit, and still happens when I get up in the night from lying down for some hours. As I only had 4 cycles, the fast heart rate has gradually calmed down, it sounds as though yours is more constant to get a diagnosis of SVT.

Your other heart diagnosis, the LVTS, I have also heard of and I know the rubicin chemos can cause that.

I'm so sorry to hear your cancer diagnosis and also that you now have to deal with these heart issues too. It's so unfair, and you are so young. I hope the heart treatments go well and work for you and that you keep beating the odds for a long, long time. Please do keep us updated.

Joining the new thread from the old one. Question about post surgery swelling. I had mastectomy, diep and sentinel lymph node biopsy all in one op 10 days ago. Still recovering. The worst is my armpit. Swelling in the armpit, cording in armpit and mild swelling down to elbow. Has anyone else had this in the first few weeks after surgery? Did it subside? The abdomen and breast are fine by comparison.

Hiya it does subside, you've been through a hell
Of an operation and ten days is nothing really. Have you got a mastectomy pillow? They're like heart shaped and you can get ones with a cool pack in it? I found that helped a lot when I had a Sentinel lymph node biopsy a few years ago, if you haven't got one I'd be happy to send you mine? I found it the other day and I thought I need to donate it or get rid.

@SummerCycling no, no EC beforehand, straight into the paclitaxel.

Thread seems really busy tonight - I'm off to read the rest.

I've just remembered the other thing I forgot to ask this morning - my hair's growing back already (and the itchy scalp is driving me a bit nuts!). Do any of you know, since I have 12 weeks to go potentially, is it likely to fall out again? I'm wondering whether I'm likely to end up with patches at different stages of growth & whether to keep it shaved for now. Or, whether to embrace the inner fuzzball & leave it to do its thing? (It also looks mostly grey...I'm sure I wasn't THAT grey but maybe I was 🤷‍♀️).

@Atreus glad to see you got your treatment today. I hope the hair loss isn't making you feel too bad - it's bad enough having treatment but then you get a reminder too when you're doing normal stuff 🙄

I keep catching sight of myself in the mirror or a window, as I walk past, & it's still surprising there's no hair. Plus I'm still getting dressed to avoid the hairclip I'd usually use on a morning/evening to keep my hair out of the way. It's weird.

@lucysmam my hair started growing back after I finished 4 rounds of EC - and continued to grow whilst on Docetaxel. I expected it to fall out again but it hasn’t! So far so good! However, a friend of mine had the same regrowth on pax but it didn’t last so by the time she had completed all her chemo she was bald again. Fingers crossed your regrowth sticks!

@Atreus I’m so glad you got your treatment. A drug shortage faff would have pushed me to the limit.

Welcome to the new posters, sorry you are here but it’s a great place to ask for advice. 😀

@Whattodotomorrow thanks, I am kind of expecting it to all go again. We'll see I suppose.

Morning all and hooray it’s prom day! We can live through your DDs lovely experiences. Welcome to the new folks although @Loobyloo68 you might get more appropriate support on the Life Limiting Illness threads.
I am back on round 4 of Capecitabine and in full Zombie mode. When I drove to the hospital pharmacy to pick up the drugs I couldn’t find a space as the pharmacy parking was full. First time my Aunt’s parking angel has failed me. A very nice Parking Attendant took one look at me and found me a histopathology space so I didn’t have to walk far. Maybe he was the angel!
I sat in the car bracing myself to go and get the bloody drugs that I don’t want to take and make me so ill. It took real courage to collect them. I hate this! I’m fed up of treatment and being ill and tired and limited in what I can do. But my bloody mindedness will see me through. I’m going to sit feebly in the Rage Room and flick rubber bands at a picture of a Cancer cell while swearing. My lovely friend who died of melanoma just before the immunotherapy was available on the NHS was an artist and painted amazing abstracts of melanoma cells. She even got a Wellcome Trust grant to do it. I have one of her seascapes of a storm we sailed through that talks to me. She would brace me up and say “Get on with it you know it’s worth it!”
Sending strength to you all. What I can spare anyway. X

Oh @TopOfTheCliff , sending lots of strength your way. It's so hard making yourself go through treatments you know are going to make you feel worse. I had a call from the oncology nurses last night to see how I was getting on with the new treatment - but I hadn't had the drugs yet, having waited nearly a week for the pharmacy to get in touch. That was the kick up the backside I needed to chase them, and after ages on the phone it transpired something had gone wrong in the system and the order hadn't been printed. So now I have to wait until next week to get started. I should have chased sooner, but I am just so worn down by all the admin of it all.

More positively DD1 had a great time at her post-16 prom last night and brought her friends back here afterwards. They are very sensible, lovely girls who don't drink much or not at all, so it was all very calm and more of a sleepover than an after party, and they have now gone off to the venue to help clear up.

@TopOfTheCliff sending sympathy and lemon drizzle cake to the rage room for you.
@dotty2 how lovely

@dotty2 it is lovely to hear what a fabulous DD you have. I used to host those 16 - 18 parties in my large back garden to the horror of my friends but I wanted them to be safe not out in public spaces on the quayside or in a park full of pervy old men. I even had a standing joke about the condom supply so they knew where to find one. The girls used to clean up afterwards and do the recycling so my house was in a better state than before the party. They have all grown into wonderful young women, some with their own DC now. Most of them drink very little alcohol compared to my generation. I still have one wild gay DSS who likes to party hard and cross dresses but he knows my boundaries after I chucked away some horrible dope paraphernalia I found the morning after and threatened to call the police if his friends did it again. Do I miss teenagers? Not one bit!

@TopOfTheCliff I’m sending you 5 of my spoons to use and an automatic elastic band launcher: you just press the button.
I’ll despatch a cream horn your way after you’ve finished the lemon drizzle.
I also think he was the angel.

After all of the energy you use sending all of us support and knowledge, I think we can all find some to send back to you @TopOfTheCliff . I will certainly add a few spoons to those @LemonDrizzle10 has sent!

@SummerCycling thank you so much for your lovely message. It's really interesting to see your chemo which by the sounds of it is a close variation of doxo has caused you heart issues. Had your heart calmed down a bit now, are the beds helping?

The Thing that worries me is with my cancer it's a laparotomy with the chemo being administered via chest and abdo drains, it's a rough old surgery and only a few % of people can have it as it's pretty brutal. And those chemos from what I remember are the first line ones that shrink mesothelioma and I'm worried that if my tumours are there again I won't be able to have the chemo. I know I'm catastophising here massively. I guess I just need to see what the MRI is saying next week before I let my head go down that path.

One step at a time for all of us I guess. Bloody asbestos, I wish wish wish it never existed.

I hope everyone has a good day. It's quite sunny here in Surrey so I'm sending everyone some sun and I'll bring some homemade scones for our tea!

Aw, @TopOfTheCliff , sorry to see you're struggling through. I'm quite chipper today so will add to the spoons from the other ladies if they'll help.

@dotty2 nice to read your dd had a good time at her prom & afterwards. I'm not 100% sure about dd heading to either after party she's been invited to - more because she's responsible for dd2 in the morning if they're coming to meet me for lunch after chemo. I'd usually have offered them to come here but I'm ready for bed quite early so didn't want a house full this time.

Preparations are well underway here - tan was successful, thankfully...no streaks or patches. She has missed washing off half her forehead though in an attempt not to wet her hair 🤣 so has a funny line going on that needs fixing.

She's currently sticking lashes & complaining about how long it's taking. Good job she has 6 hours until my dad picks her up really & is fairly organised.

I'm going to blow up a few balloons and put up a sparkly door curtain for a few photos in the house. I felt a bit tight for not having done more, after seeing many many fb pics of balloon arches/banners/personalised hangers/whatever else, but, if it hadn't been for my best friend taking charge she might not have had what she does have so I'm trying not to overthink it.

Best shout up & see how those lashes are going...

@TopOfTheCliff I so hear you on being fed up with treatment, feeing tired and being limited. I get like this at times and like you, 3 years in, I am totally sick of my life being dominated by appointments and my condition.