Cancer Support Thread 89 - the best thread that no one wants to be on.

[LemonDrizzle10]

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I suspect the fear never leaves a person.

I had a long list of blood tests done the other day as part of a well woman check up and when the Dr turned her monitor around so I could see the results as she went through them my heart flipped then I closed my eyes and turned my head away. I was almost sick with fear.

And the same thing happened when my Dr went over my MRI just before I had my knee replaced. I had another funny turn and froze. He then touched my hand and said - I think I just lost you. He was so kind and I explained but I suspect the fear of any medical result will be with me forever.

@1Strawberrycat you have got a seroma that needs draining. It’s not painful and an enormous relief when it’s done. If you can get hold of the BCNs they can do it but with the BH tomorrow it may take time. I had mine drained 3 times then it made a hole and drained itself.
On ferry home. Had a lovely time and glimpsed Normality briefly!
Back to cancerland next week.
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Afternoon all. I’ve been lurking this week - have been feeling very down and didn’t want to lower the mood. Feeling cheerier after dinner with lovely friends - one a BC survivor for some twelve years - on Thurs.
Glad GCSEs seem to have delivered desired outcomes despite media pessimism.
Had my bloods done for the next cycle of chemo - all good.

Thanks for all the advice lovely ladies regarding my sore lumps. I'm hoping to get someone to give me a lift to get it checked out. I've had a lovely day today. I rarely get visitors and today my son and his girlfriend were here and my friend I haven't seen for a long time. Another good friend came to visit and we had dinner together and my lovely neighbour came and walked the dog!

@Florabritannica , sorry you’ve been feeling low but please don’t feel you can’t post about it. There are a lot of people on this thread and there’s bound to be someone feeling the same (or who has felt the same in the past). There was some chat a while ago about people being sick of false positivity so let’s not fall into that trap ourselves. Glad you had a good time with friends though.

@dotty2 thank you! I get so bored of the same soundtrack playing in my head and don’t like to inflict it on others.
My sister’s coming over tomorrow and will take me to chemo on Tuesday, so I’m looking forward to that.
I am just finding life very tough. I learned at the end of June that I wouldn’t be working in September and instead of jumping into plans for enjoying my new freedom I was hit by a cancer diagnosis two weeks later.
The practical upshot is that I have no structure or framework to keep me going through the treatment process, and no plans, hopes, or dreams for when it’s all over.
And I just can’t shake the feeling that this is a good moment for a tidy exit. Except that one thing I’ve learned from everyone on the thread is that it’s really not a tidy exit!

Oh that’s rubbish timing @Florabritannica I hope that the time off work has meant a bit less stress though.
It's mentally hard to make plans for the future - I got a buddy from the breast cancer now website who has helped me with this. The biggest mental boost came from getting the new pup. She’s filled the days with chaos and laughter - the laughter far more welcome than the chaos.
What little things bring you happiness?

I loved my job (academic) and felt very blessed to have been able to switch careers from something that had made me increasingly miserable (teaching). I would have taken time out, but knowing it was there for me to return to would have given me a normality to look forward to.
Things that make me happy: my family, friends, dog, chickens.
I asked at the hospital what they offered in the way of complementary therapies - thinking I might as well fill my days with reflexology and yoga - but they don’t do anything at all.

There’s a yoga lady online I think. Where in the country are you?

Hi @1Strawberrycat after ultrasound/mri it was thought to be 2.8cm, when they took it out it was 7cm!! I think most of it was deeply buried…

re chemo and how much you get, I’ve always thought of it as the more ill you are and less curable the more potent your chemo and the more curable the the lighter your chemo is because you need less, makes sense to me 😁
so I had my nipple removed (after a mastectomy a month earlier) a month ago. It’s healed pretty nicely and no longer have any dressings on it - had a dressing clinic on weds and bcn said all was fine. At the bottom of my scar is a big lump of scab, I noticed whilst washing this morning that the scab has lifted slightly and there was some pus underneath, I’ve cleaned it gently and put a steri strip over it. I’m due to start chemo on 6th, do you think it should get this looked at or just let it do it’s thing naturally? Sorry for the gross details 🤮 obvs wouldn’t be able to see bcn until Tuesday earliest anyway…

@LemonDrizzle10 I’m in the south west. There’s lots of yoga online - I’m just too enmired in lethargy to stir myself to do it.
One of the things I hate about depression is how you become your own worst enemy.

Oh yes! It’s hard to not keep falling down further into depression. Pull the brakes and make some flexible plans to climb up a bit. There’s a cafe near our house that has a deck looking out over the water - boosts my happy endorphins a bit.

@Florabritannica sorry to hear about your low mood. It can really hit rock bottom sometimes. I was in a really bad place a few weeks back, made worse by the fact that cancer is not even, as you say, a tidy exit. It feels like it is just a shitshow the whole way, in whichever direction. But, it is worth remembering that there can be better moments. Depression about such a situation can both come and go. There can be moments of feeling better both physically and mentally, enjoying small pleasures (which are actually the real pleasures in life but which can dissappear unnoticed in ordinary life): coffee and cake, a nice sunset, time with friends, family or pets, a nice stroll, etc.
I get it though that lack of structure can also make you feel lost (another academic here). Is there something small you might have always wanted to do but had no time for? I am working my way through organising photos into printed albums (nice to review good times as well as create a sense of structure). Escapism in a book can also help, delving into the details of someone else's life and dilemmas can be nice I find. Finishing a book can also give a sense of small achievement. Daily exercise, yoga, etc. can do that too - achievement, a sense of calm or just structure to the day (eg. something to get done at a set time).

@Scandimandy I’d definitely get that looked at just incase you need antibiotics.
Chemo will hit your immune system- get yourself in best shape before you start it.

@Scandimandy From what I understand from reading often the tumour turns out to be larger when removed. The last known size of my tumour was 6cm (double what I was told originally). It was removed 2 weeks ago along with cancerous lymph nodes and on Wednesday I shall find out exactly what they found and how my treatment will progress. Originally I was told that chemo won't help but there still seems to be some confusion regarding my Her2 results. It was borderline, then negative and now borderline again. I'm kind of just going with the flow - I do as I'm instructed as I'm hardly an expert on cancer but I do push along appointments etc as I don't want to be waiting around needlessly whilst the NHS system falls apart! I'm expecting a certain result on Wednesday - which is "the margins are clear and I will need some radiotherapy just to be on the safe side." So I'm sticking with that thought 'til Wednesday and if I'm told different (worse) I'll have to deal with it then!! Regarding the pus under the scab I would be inclined to take the sterile-strip off ( maybe with a dressing pad instead?) so it can drain freely and phone 111 asap and try and get it looked at asap. I know how difficult it is to get care and professional advice at the weekend but from what I understand the pus means infection and you need antibiotics. Take care

@Florabritannica I am in the southwest too and I know Exeter Force centre offers a lot of help. Torbay is a bit useless they closed the Macmillan lodge during Covid and don’t let you in without a booked appointment. I don’t know about the others. I’m happy to meet up for a coffee anytime, or go for a short wander round a garden or something.
I have been asked if I would like to help prepare a new issue of a very well known West Country sailing guide. It would be a paid project for next summer and would be very prestigious and fun! I am quite keen to hear more. I’m flattered that the publisher, who is an old friend, thought of me. It’s given me another nudge to think beyond the hideousness of cancer land. I’m sad I have to get stuck in again next week. I have enjoyed the short break. @isaxx you are spot on about enjoying the small pleasures of life when you can.

Ah @TopOfTheCliff that’s very kind. I’m Dorset rather than Devon - Exeter is two hours from me. Part of the problem is that I’m being treated privately: I should probably contact my GP to access NHS services - I need to anyway to increase my antidepressant prescription.

Flora The year or so cancer treatment is very tough going emotionally but it does end and I found best way through is take it day by day and do nice things where you can. I had a second horrendous year immediately afterwards where my son was force injected by cahms and it went wrong and left him unable to move or eat for 6 months and he needed to be in hospital 8 months. He should have taken gcses this year but that was lost. Before this I had pretty much everything go my way. But now 1 year on from radio I don't worry about cancer much at all, I am fit swimming 3 miles a week, I have been to Maldives, Mauritius, France, Porto and Azores in last year, in Mauritius now and my son has finally been given a great school. And my daughter is looking at Oxford Uni. I am getting lots done on house and it feels like my life is back on track, DD is thriving with her 12 GCSes during my chemo at almost perfect grades and an A at As level and 2 fascinating jobs and A levels. Dh is fine. Ds has a long way to go. But life does improve, it may be a different path to the one you were on before but it's definitely worth living and pushing through the hell that is cancer treatment. Radio was a breeze after chemo and Tamoxifen isn't bad. I still have reconstruction to come and hair I am not that keen on but again it's something that can be worked on.

Congrats to those who got GCSEs. Today I have had breakfast by the beach with DD, went on a tubing thing pulled by a speedboat with DD fast at her request, bit like a banana boat, swimming in a infinity pool, beach and a lovely dinner with cocktails and flowers and 3 course meal. Good days will be there in time and hopefully some during treatment. Kitchen is being done at home with red cooker, like a range one I am so happy with that cooker.

Sending love to everyone.

Just popping in to say a quick hello as it’s been a while since my last post. I haven’t managed to keep up to date with people’s news but I hope everyone is dealing with news, symptoms and scans in the best way they can.
Its been a long summer as I’ve been recovering from surgery and looking after the children. However, I was starting to feel like there was a light at the end of the tunnel until my oncologist called to say I would be doing the longer radiotherapy option. Sigh.

So I’m looking at 19 sessions starting the first week of October (I asked to delay it slightly). Does anyone have any advice on how to deal with this long a course? It will involve an awful lot of driving too.

And secondly…since Chemo finished I now seem to walk like an old woman. I assume it’s the menopause… but god do my legs, hips, bones and joints ache. Does anyone have any tips to help ease the discomfort? Will it get better or is this the new normal? (I’ve not even started the hormone therapy yet!). Could my gp prescribe me something…is there a drug that would help with aches and mood improver?

Hello all!

I am knackered today! Went out to celebrate a friend's 50th last night, drank sensibly & didn't over-do it, or so I thought...I woke up at 3am with awful stomach cramps & vomited a bit 😢 Not sure what that was all about, I felt fine again after some sleep & have had a verrrry lazy, nothingy, kind of day today. Will be off back to bed in a mo I think 💤 Hopefully not for a repeat!

I have no idea if it was the couple of wines, the chemo, dodgy burger in town with the kids maybe? Blah! Not how I wanted to spend the day.

Struggling today. I managed three days of pulling myself together, being strong for DS8, acting as normal as possible. But today I feel like I just can't breathe properly, and I don't know if that's an emotional or a physical symptom, and I'm catastrophising. Any advice on how to snap out of it? I just need to keep it together until the next set of results on Tuesday evening, and the wait is so horrible.

@KentishMama , I’ve had some breathlessness and I think anxiety definitely makes it worse. Trying to consciously put my shoulders back and relax my chest muscles seems to help a bit.

@Whattodotomorrow , I had 19 sessions too and found it hard. Lots of people say it’s a breeze after chemo but I found the driving/parking stress hard every day plus I hated lying there in the dark with nothing to do but worry while being manhandled. Mine were at random times so I had no routine and they were often running late. That’s probably not v helpful, but don’t feel bad if you don’t find it easy….

@Florabritannica have you been in touch with the Fortuneswell trust and Weldmar? They should be able to give you info on what's on offer?

@Whattodotomorrow I've started Paroxetine (anti depressant) on a low dose recently to combat menopause symptoms and lts really helping. Does your cancer allow you to have HRT? A friend is also having good results with collagen for her joints.

@lucysmam

I really love all your posts about the things you've been making, you're incredibly talented. 🌞

About your question why some people are given various different treatments, chemo etc while others aren't I think there are just loads of pathways and variables.

I'm not in the medical world, so can only guess, but I think within breast cancer, people with triple negative (TN) and Her2+++ will always get quite a lot of chemo because those sorts are always aggressive plus also tend to respond to chemo. With the hormonal cancers, some people get chemo while others don't seem to need it, plus they can sometimes respond less to chemo than the TN and Her2 types I was told. With inflammatory, I think it also depends on the further subtypes like Her2 driving it, but I don't honestly know.

I have met people with various treatment plans and different chemos even for Her2+++ hormone negative, which is my subtype. For example, I was put on EC chemo for 4 cycles, then Paclitaxel/ Abraxane but others weren't on EC at all, only Paclitaxel or they had Docetaxel and Carboplatin.

Maybe each oncologist has preferred chemos? I know the 'driver' makes a difference (Her2, Er etc). Maybe it's also the stage and grade of the cancer? Or is it our age? Our general health? Or maybe they try one and see how the cancer responds in that particular patient?

With immune therapies, targeted therapies it seems to be closely matched to the subtype e.g Phesgo for Her2+++ and of course Tamoxifen / other oestrogen blockers only help people with oestrogen sensitive cancer.

I am officially "unstaged" but actually it would presumably be 3c looking at the size of mass (over 100mm) and lymph nodes ("multiple"). In radiotherapy they zapped my neck too and 5 places, over 15 days. Surgery was full mastectomy plus lymph node clearance as much as they could possibly reach. And a year of Phesgo, which is 2 monoclonal antibodies that target Her2.

@PollyThePixie

You mentioned being upstaged from stage 1a to 3 immediately in surgery on discovery of your "watermelon" (your description) sized ovarian mass. But they still didn't prescribe any chemo? Did you only have surgery? No chemo or radiotherapy?

I'm only surprised because people I know with stage 3 ovarian have had everything i.e. chemo, radio, surgery.

But you seem to be doing fine years on, so something was right!

@Whattodotomorrow

I also found chemo absolutely horrendous and that it left me rather broken. Some months later it's improved somewhat, but I am not the person I was before chemo. I hope in time you will feel stronger. I've heard some people feel fine later on.

@Florabritannica

My hospital also does absolutely nothing other than treat everyone on a conveyor belt of chemo, surgery etc with nothing at all for the soul. No complementary therapies and nobody from MacMillan either, just a few of their brochures.

I found a wonderful charity online called Penny Brohn, based in Bristol. I am in a London suburb so can't go there but I joined their online classes. Their exercise for cancer patients got me through chemo. It's exercise at the right level for each person, company, and gives you something in the day during the hard times when going out is not possible. They also do other classes like art, relaxation etc. I have added them to my will.

https://pennybrohn.org.uk/

@Silkierabbit

Your photos are so beautiful, I wish I was there too! Have a wonderful time.

Greetings to everyone else here too xxx