Cancer Support thread 86 - Stay Positive

[LemonDrizzle10]

New thread as other one nearly full.

Hi, here I am for me on thread three. Who knows how many more I will be on! This is a beautiful place and Ive found it so supportive. More than the real life groups.

I'm a nurse aged 55 single and not ready to mingle😃 i have a lump on my groin which I have to say is shrinking. Im just about to start my third round of Paclitaxel and carboplatin. Ive had all the side affects but they have been manageable. I am getting tired though. The hair was the worse part. My crowning glory. I will say that shaving it off was the best thing I ever did. It was so painful falling out. I have many hats. I just think everything will pass I just have to get through it.

my cancer is bollocks. Unknown primary. Googling does no one any good. My prognosis on google is terrible. However my oncologist is very optimistic as they know it is viral probably hpv even though ive never had a dodgy smear and had a full hysterectomy four years ago. My cancer is normally found in the throat, on the skin, up the bum or vagina. Ive had every test and its nowhere to me found. Its hiding very well. Best case scenario is that it was somehow in the hysterectomy. They havent been able to find my histology results from it but im sure I wouldve been told at the time?

im trying to be positive, it is hard sometimes. My mother wont talk about it. Cancer is still something to be whispered about.

i live on my own with many cats. I know they arent human but I do worry about what would happen to them.

wishing you all loads of love and a peaceful week. Im off to get ready for chemo now. Its weird but i am always strangely upbeat on chemo days x

Thanks for starting the new thread @LemonDrizzle10

I am 37 and was diagnosed last May with stage 3a low grade ovarian cancer. Like @EachandEveryone google prognosis is pretty terrible so I am living in terror on a daily basis.

I had debulking surgery in June followed by 6 rounds of chemo (pax/carbo switched to Abraxane/carbo) and am now on Anastrozole hormone inhibitors long term to try and prevent recurrence. My post treatment scan in December was clear, I have my 3 months scan this afternoon. Recurrent rates range between 60-90% so it’s a real, never ending fear.

Every single twinge I get now is cancer according to my brain. Which is silly as I didn’t even have any symptoms until 2 weeks before diagnosis but had 2 large tumours and lymph node involvement! I’m doing battle in my head constantly to try and play down the paranoia and enjoy each day.

I live in south wales with my husband, children and 4 cats. We just came back from our dream Maldives holiday this weekend and it was absolutely fantastic out there. Plenty more plans to be made but not able to plan too far ahead now due to the obvious fear of things changing!

This thread is a great source of support. Hoping to see @thereisonlyoneofme here, I’ve been thinking of you often.

Thank you @LemonDrizzle10 for starting another thread. I know I seem to use these threads as a rage room and I’m sorry I can’t be as positive and helpful as others on here but maybe I’ll get there one day. I can’t bear any “real life” groups, this is the only place I feel I can “speak”.

I’m 37, diagnosed with breast cancer in August when my DD was four months old. I thought I had mastitis…ha. It was not mastitis, it was a 27mm grade 2 tumour, DCIS elsewhere in the same breast, with spread to lymph nodes in the armpit but no obvious sign of it anywhere else. All removed and I’ve just finished 4x EC and 4 x paclitaxel. I used the cold cap and kept my hair until the last few days, when it has decided for whatever reason to fall out - along with eyelashes and most of my brows. I am not coping at all any more. People keep telling me I’m their hero or that I’m really strong and that’s winding me up because 1) it’s not true and 2) all I’ve done is go through treatment and I didn’t have much choice about that. I have my radiotherapy consultation this week.

I have a wonderful DH (who had a brain tumour successfully removed in 2020 - not cancerous but could have killed him all the same) DD, and two soppy dogs.

I've lurked on the previous thread and posted a while ago but life got in the way. I'm 54 and have terminal mucinous ovarian cancer. Diagnosed aug 2020, had a massive PE a week after diagnosis which delayed things a bit but had full boobs to pubes surgery in October then 6 rounds of paclitaxel/carbplstin. First month scan was clear but then had a growth in my side where the biopsy was taken so further surgery for that. All fine till December when it was confirmed that the lymph nodes in groin had grown and that the cancer had recurred. Had second line chemo in January - caelyx/carboplatin and did 4 months until scan showed progression. I'd had genetic testing as part of a trial as its a rare cancer so managed to get on a clinical trial so did that for a few months until scan showed progression as a pelvic mass and more lymph nodes. So tried 3rd line chemo of folfiri and again progression. So I'm in the position now of there probably being no options left and I have an onc appt on Wednesday where we'll have the conversation. Thing is although I know I'm ill, I struggle to walk due to swelling in one leg and I'm taking painkillers for the pain caused by the swollen lymph nodes - I don't actually look or feel that bad and can't quite believe this is the end of the road.

@WorryMcGee I delurked mainly to say that I hated it too when I lost my hair - I couldn't bear to look in the mirror even though I knew it was only hair and i shouldn't be so vain. I hated it when it grew back as well until I could put it in a tiny ponytail and I looked like me again. I wore hats as I couldn't get used to wigs - slouchy beanies - and bandanas - maybe instead of being the woman with colourful and amazing hair you could be the woman with amazing hats and bandanas? There are lots of funky ones out there.

Thanks for the new thread @LemonDrizzle10
I am nearly through my second circuit of the cancer triathlon.
I started in 2020 with a Triple positive Grade 3 IDC breast cancer with one lymph node affected. I completed 18 months of chemo, surgery, radiotherapy Herceptin, bone infusions and hormone blockers and was just recovering when BAM I found a new lump on the other side which was a triple negative Grade 3 IDC breast cancer with no lymph node spread. I have done the chemotherapy surgery and radiotherapy and am having a little holiday from it all before starting 6 months of oral chemotherapy as an insurance policy.
Considering everything I am relatively sane, with occasional rants and crying spells, but exercise is my saviour so I am back on my bike, going to exercise classes and getting my boat ready to launch at Easter. I even have some tomboy hair now.
I used to be a GP but thanks to cancer have escaped to be a happy NHS pensioner. Optimistic denial is my coping strategy. And cake!

Just got in from a very soggy bike ride but I am just delighted I was able to take part.

I was diagnosed with stage 1 grade 3 triple negative IDC breast cancer in November 2022. About to finish my fourth round of paclitaxel/carboplatin/Pembro then moving onto 4 rounds of EC chemo. It seems to be responding well to treatment but I’ve had the full range of side effects and feel pretty lousy most of the time. No hair, but my eyelashes are clinging on for now.
i separated from my h in September and am currently going through a very acrimonious divorce but have 2 fabulous teenage girls who are keeping me sane, and 3 cats who mostly seem to be trying to kill me.

Well that’s it done. Head shaved. I feel awful and I cried the whole time but the salon had a big yellow labrador to cuddle which helped a little bit.

Hi I was diagnosed with stage 4 ovarian cancer in June 2020 I had chemo paclitaxel/carboplatin, full hysterectomy and then 18 rounds of Avastin. I had my first reoccurance in November last year and I'm currently receiving caelyx/carboplatin and then Niraparib. I had a scan last week (results later this week) my last CA125 was normal so Fingers crossed.
My son is 10 today and my aim is to see him start secondary school .
@WorryMcGee I found the period after treatment so difficult and of course you still have radiotherapy to go through. Ignore the people that come out with the 'warrior''shit they know nothing. We have had a major trauma allow yourself the time to recover x

Thanks for the new thread...as a relative newcomer to all of this, I found the last thread super helpful and thank you to everyone for being so kind.

I'm now 2.5 weeks post-lumpectomy and sentinel node biopsy. Physically feeling a bit sore still but doing OK (especially once I went to see the nice Bravissimo ladies for some more comfy nork support). Mentally this weekend has been quite tough, my wonderful girls were home from Uni for Mother's Day and they're struggling with the concept of their normally super healthy mum having cancer, even though the doctors are saying the prognosis is good. I should get the margin/node biopsy results end of this week which is playing on my mind quite a bit, and then I'll get a better idea of what comes next. I'm trying so hard to stay positive for me and everyone else, but it is quite exhausting.

Hi, Im HerbalRefreshment, "hi Herbal", 45 yo, diagnosed at 42 with stage IV de novo breast cancer. Currently trucking along on my second line of treatment. Ive had a mastectomy and recon, bunch of rads to various points in my body, but no chemo to date. Live with two cats and a supportive, practical hubs. Desperately in need of a beach holiday.

Thanks for the new thread. I was diagnosed at 48 2 yrs ago with HER2+ PR+ ER+ breast cancer after finding a lump. I had FEC-T chemo, mastectomy, radiotherapy, half a course of Kadcyla & half a course of Herceptin, then DIEP reconstruction and now planning the second phase of recon surgery to make the "good side" match the other size-wise as I cannot get an acceptable bra fit. Also on Tamoxifen before moving onto AIs & due to start zoledronic acid infusions. I don't post a lot now but chip in now & again. My new thread intros get longer each time with new meds & procedures to add!

I'm just a nauseous wreck on my sofa. One dog, who has spent as much time snoozing as me. One DD10 who is a pre-teen horror.
Not looking forward to injecting myself later on.

I was diagnosed at 48 with 2 lobular breast cancers both on right side which had spread to a lymph node. Had 2 surgeries mastectomy and then full node clearance on right, then prosigna test then chemo weekly Pax then radio. Finished in August 2022 after starting in November 2021. Now just 10 years Tamoxifen and a long wait for reconstruction surgery. 2 teens, 1 giant Maine Coone, silkies and a rabbit. Been to Maldives since treatment ended and off to Azores soon. Was a gruelling and distressing journey but it does end. Hair is still trashed. 1 breast chopped off. Pain in face every day but very glad chemo is over. Sending love to everyone.

Happy Birthday to your DS Lis

@LemonDrizzle10 thank you for the new thread.

I was finally diagnosed in December 2020 after 11 months of faffing about following 2 DVTs in the February. My diagnosis of stage 3c ovarian cancer was an incidental finding when being investigated for a blood cancer (negative). I had 6 cycles paclitaxel/carboplatin January -June 2021 with surgery after the fourth cycle. I've been on Niraparib since September 2021. I'm another one with a poor prognosis according to Google. A lot of the time I still feel this is all happening to someone else and I can push it away, other times I'm in a downward spiral of gloom and doom.

@WorryMcGee losing my hair was a huge deal for me, I do understand how it affects you. My hair has never been that nice but I felt that baldness labelled me as a cancer patient which felt very exposing. I also couldn't look at my bald head so avoided mirrors when hatless. I didn't ever cash in my voucher for a wig as I just couldn't face it so got by with beanies and sunhats. Even though my hair has grown back now, I still feel people are looking at it and wear a hat at every opportunity.

@Lisdeflores and @AGreatUsername really hoping your scans are clear.

@thereisonlyoneofme I too often think of you Xxx.

I’ve had a lot of the ‘you’re so inspiring’ stuff from friends as well and I know they mean well but really, what choice do we have? I have 2 kids, they need me. I would love to be able to just fall apart some times but as my stbxh turned out to be an absolute bastard at exactly the wrong time, that isn’t an option. There’s no one there to catch me and keep the wheels on.

How do you feel about celebrities dying, just this week Jacqueline Gold . And Stand up to Cancer on telly all weekend. I literally have to turn it over as fast as I can. Every other advert about cancer. Every celebrity I feel myself making age comparisons. Then I think how come their money didnt help them? If they can die then why not me? Its a great leveller isnt it? I just had my first of three today. Its meantto be my last cycle but im not holding my breath. I got free eyelashes and a hat today everyone is so nice. I had a massage. Im in awe of the staff and how the atmosphere is so uplifting. They dont seem flustered and stressed the way my wards are? I wonder if they take it home with them? Or if the positivity carrys on.

Thanks for starting the new thread. I’m 45 with 2 young children. Diagnosed with triple positive, grade 3 breast cancer in December with lymph node involvement - how much depends to be seen. Currently 3 rounds done of EC, one more to go to be followed by 4 x Doc, surgery, rads and all the shit afterwards.
Currently massively struggling with positivity and the mental strain of it. And no hair. Walking is my salvation at the moment.

Hi, I'm an occasional drop in these days. It was 2 years since my diagnosis earlier in the month. Breast cancer, grade 2 ER+ and PR+. Had mastectomy, immediate reconstruction, turned out 3 lymph nodes had a tiny amount of cancer in them (nothing showed on scans) so chemo, 4 x EC every 2 weeks and 9 weekly Paclitaxel (stopped due to DVT in arm), full axillary clearance, radiotherapy. Now ovarian suppression injections, letrozole and 6 monthly Zoledronic acid, only 3 more of them to go. Still on blood thinners as a precaution.
I may need another op as possibly have capsule forming around my implant but this time DIEP was mentioned. Better result but long recovery.
I found the chemo unit so calm: cheesy 80s music on the radio and that tick, tick of the machines. Lovely staff too. It's quite a small unit so felt more personal. I find it reassuring going back for the Zoledronic acid.
Bit fed up having to chase follow ups ie. annual mammogram and seeing someone about my odd shaped boob. Also, the weight gain from medical menopause.
I cold capped and lost 3/4 of my hair but it started regrowing on Paclitaxel. It's 17 months post chemo and it's short bob length but waiting for the top bits to catch up.
Going through active treatment was tough at times. Finishing treatment was odd and I felt like I'd been thrown off a boat into a strange land.
Something I did do was 5 days away with a charity called Odyssey where I did things I never imagined I would and it helped me realise my body wasn't completely knackered. I would recommend if your hospital refer.

Just found out that one of my close friends has got breast cancer. I wondered if there was anything breast cancer specific that I could get her that would be useful as I feel totally useless in being able to support her as I'm currently in the hospice trying to get my pain managed. I am trying to give her moral support.

@EachandEveryone I find it hard too that its in your face all the time but try not to let it upset me.

Thank you for the new thread.

I found a breast lump nearly a year ago but it hurt and was just under a spot I’d had on my areola so stupidly put off getting it checked thinking it couldn’t be cancer. Diagnosed last August, grade 3, weakly PR and ER +, four positive nodes, and prognosis officially ‘poor’. I’ve just turned 50 and have teenagers and a new, lovely but needy cat we have just rescued, replacing a lovely and not at all needy cat who also got cancer, shortly after me. My much loved Dad is also waiting for test results for suspected blood cancer. Def not watching bake off….

I’ve finished chemo, waiting to start RT, ET and Abemaciclib. I’ve generally managed to stay fairly positive but seem to have hit a low ebb. Mainly due to worry and guilt about my Dad, but also it just feels so relentless and endless. I made myself go for an overdue smear test this morning and managed to burst into tears when the nurse asked if I was taking HRT.

@OrdinaryLife sorry to hear about your friend and that you are ill yourself. My lovely sil got me a bag of helpful treats from a Maggie’s centre- there are lots on Etsy too. My dd got me a lovely chillys water bottle and made me a lovely blanket to take to chemo.
Im 63, diagnosed aug 2021, lumpectomy, chemo and radio- now trying to manage the lovely drugs( letrozole currently) and their side effects, plus lymphoedema on my boob- unnoticed until last review with bc nurse. Thought I was doing so well with my arm…..
sending good wishes to all.

Thank you for the new thread.
64 got lung cancer. Only I haven’t because the treatment seems to have worked. I haven’t looked at recurrence rates.
I only got the news today, was quite cheerful about it until dd just totally dismissed it. Didn’t cry or make a fuss about having cancer on top of everything else (stoma and so arthritic am unable to walk) but her dismissal made me cry.

@Gilead amazing news, so pleased for you! Sorry your daughter was rubbish about it, please don’t let her reaction dampen your joy.

@Gilead that’s amazing news! I’m so pleased for you. Don’t let your daughter rain on your parade - celebrate this! 😊

@Gilead that’s so lovely! Congratulations. Your DD doesn’t deserve you x

@dotty2 I understand why you cried when the nurse asked about HRT. Most of the time we hold it all together and then one small thing tips us over the edge.

I had a lovely evening out tonight watching the Radio 4 “I’m sorry I haven’t a clue” show. Back in the depths of chemotherapy I booked tickets as it was on my bucket list of things to do. I have laughed all evening and played my Kazoo happily. Also I planted out my broad beans today. Small gains! I’m making the most of my treatment free month. And I have some hair, even if it’s strange.

@EachandEveryone I rarely turn my TV on as it doesn’t Improve my life much. I prefer radio. Having said that yesterday I watched the Banshees of Inisherin (weird!) and Fisherman’s Friends 2 (heartwarming) and that took me out of myself.

Sending hugs to those of you who are struggling. Remember the rule: When you are going through hell keep going!
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