Cancer Support Thread 87 - everyone here is so supportive.

[LemonDrizzle10]

New thread

@BeaLola

Most of our posts are about ourselves, that's the nature of a forum! you didn't come across as meMeMe at all!!! or otherwise nearly all of us would!

As Top says, you don't need to be a bad case to feel the fear. I'm sorry if my earlier post made it seem like I was dismissing your fear, I really, really didn't mean that; I just hoped your low risk status could maybe comfort you a little bit following the devastating experience of being diagnosed as having cancer.

Radiotherapy was easy, or after the 1st session it was - I was anxious of the unknown the first day. My skin was fine, and it's a couple of months ago now (who knows what it did to my inner organs though, or if there'll be later effects). I think people are more likely to write online after a bad experience, so we hear about more cases of eg skin problems, extreme fatigue, etc and less about the people who were fine.

@Therocksword I would think if your bloods show you're post menopausal, then you must be very low on hormones which would correlate with peri-menopause. My periods went haywire in my late 40s, I'm late 50s now. I had a couple of heavy days then it would stop for a day or so and then a few more days being light. @Top will know about the hormones better than me. We all understand the 'what ifs' and the downward spiral of doom. When I'm like that I can't concentrate on anything and feel so anxious, just awful.

I've had to stop reading the posts from the FB groups I'm on as I felt so dreadful reading all the bad news and doom and gloom. Having ovarian cancer, all I was reading was about yet another lady gaining her 'teal wings' and it really wasn't helping at all. My theory is that those with good news don't post on the FB groups so it's very skewed with those with bad experiences.

@FangedFrisbee I’m sorry to hear that you’re not feeling well. I hope things improve soon.

I am sorry to hear that a few others are being let down by friends. The person I thought was my best friend in the world is disappearing from my life. It makes me very sad.

I don’t know if anyone remembers but I had a little rage rant about a group of friends and their obsession with soup as the food that must be consumed by a cancer patient. Twice we had the conversation and twice I explained that I can’t have soup right now because I’m on a no fibre diet after bowel surgery and it has too much liquid and not enough calories. I’m losing weight and have low appetite with chemo so it’s all about calorie dense food right now.

So one of the group called me to say she was going to come over and bring me a frozen meal. You know where this is going don’t you? Yep she turned up with 4 big containers of soup! Not only that but one of the key ingredients is something that my husband and kids hate! I like it but I can’t eat it. Of course she didn’t ask, just made what she thought we should have. We’d normally offer it to our neighbours but they’re away and our freezer is full so I chucked it all in the bin. Now, what to say when she asks me did we like it?

@Remaker the diet advice never stops for me 3 years in! Regarding your soup gift, if you say it was lovely or even 'nice' you might get a regular delivery!

Cancer really does sort your friends out. I lost a close friend in the months after my diagnosis. Her relentless insistence that I exuded constant 'positivity' was too much for me, I felt that if my chin wasn't firmly up, then my inevitable demise would be my fault. Unless you live in Cancerland, you don't 'get it' but some friends strike a much better balance than others.

@Fantasea that’s what I’m worried about. If she asks I’ll just have to be honest and tell her that it wasn’t suitable.

Same friend lectured me about positivity, when I was just out of hospital after bowel surgery. I had an enormous swollen belly, a huge scar that was still under a dressing, bruises everywhere from cannulas and heparin injections. When I cried about my body being changed forever she told me about her BIL who was ‘rocking his scars’ about 10 years after his surgery when he is now in the clear. Just no sensitivity. I actually remember the same friend, when my dad was dying from cancer, suggesting I try to get pregnant as that would give him something to live for. I think I said something about it not being fucking Hollywood and hung up on her.

@SummerCycling - I didn't get upset by your post at all- it really helped and was of comfort - I'm just crap at expressing myself,

and to @TopOfTheCliff - thank you for welcoming me again and for info . I think im just worrying as the Appt is now happening .

Friends - yes you definitely find out who you can count on - my BF of nearly 40 years has sent me 1 email saying " I will be there for you - I can visit or arrange lots of lovely things for us to do " - apart from that email I haven't heard diddly squat from her- she lives within 1 hr easy drive - I'm a tad hurt by her attitude . However neighbours and my lovely work colleagues have been super great . My brother less so - he doesn't do illness so avoids mentioning it - he did get quite annoyed that I had told my teenage DS that I had cancer - apparently I should have avoided telling him in the grounds that I will be fine anyway .

So I’ve just heard from my best friend who has been MIA - letting me know she’s having a colonoscopy today. I guess so she can be reassured she doesn’t have bowel cancer like I do? I’m probably being overly sensitive, but she has no relevant symptoms or family history. If you absolutely must have an unnecessary medical procedure maybe don’t tell me about it, I don’t need to know.

@BeaLola Welcome (again). Sending you very best wishes. I’ve just finished radio and was left side so had to do the breath holding. I’m not asthmatic so didn’t have that worry but I was a bit anxious about it. It was easier than I thought. As others have said, it’s not for as long as 30 seconds and also it’s not a very big breath so is easier and more comfortable to hold than you might think. I kept being told to take a slightly smaller breath! And they work with you to try to help you relax into the bed. I also had a longish wait. But it doesn’t affect outcomes. Just annoying when you want to get on with life.

I’ve committed to do an in person work thing today. I didn’t have to go but I wanted to meet some clients I’ve been working with all through my treatment who I’ve never met in person. They are lovely but super bright so I need to be on top of my game. It’s a 2 hour plus drive each way. I’d dithered about it and worried about whether I’d feel well enough. And now I feel fine in myself but have woken up with a massive, painful ugly stye. FFS. I’ve had cancer, surely I could have been spared a stye today of all days???

Hello,
Looking for support and advice from anyone.
Feeling in utter shock. I've just received biopsy results to say my lump is ductal stage2 BC. I have a few more lumps on the same breast so they have biopsied them and 1 of my lymph nodes. No for another agonising 2 week wait.
I'm obly 36 and have a 1 and 4 year old, so I'm feeling quite numb and scared at the moment.
Any positive stories out there ??

Ah the Positivity Police - it's not enough having to get through bloody treatment, we've got to do it like some kick-ass warrior princess...some days I get quite grumpy about it and have to remind myself that people who haven't been through it really don't understand.

Welcome @JessJj1986 to the thread no one wants to be on - it is a great thread filled with people who 'get it'.

There's lots of people going through various stages of BC treatment on here who can help and support you with any questions. You're at the worst stage now where you don't know quite what's what so are of course fearing the worst.

Welcome to the chat you don't want to be in @JessJj1986, everyone here is so supportive.

I had invasive ductal and lobular, stage 3, found a month into lockdown one when I was 10 years older than you with an 8 & 10 year old. I'm still here, fitter than ever. I had a mastectomy, lymph node clearance, 18 weeks of cheno, 15 sessions of radio and finally a delayed reconstruction. You may feel that you have stepped onto a hamster wheel of appointments, please remember we are here to vent to. Some posters are around frequently, some (like me) dip in and out.

Your treatment will depend on the type and grade of your cancer, but it's highly likely someone here will have the same or similar.

My biggest tip is the one no one wants to hear. Exercise. It's good for my mental health and will also help set you up for any surgery or chemo. I can't say I enjoy all of it (about to go shuffle round the village, starting couch 25K again) but it is sooooooo worth it. Following my latest surgery I was told I shouldn't be recovering as quickly as I was, and I was an anomaly!!!

Please ask any questions, the more random the better, and I'm sure someone will be able to answer them. The worst is the wait for information 😭please never feel alone x

Thank you so much X
I'm sure I will have plenty of questions.
Feeling very nauseous, wondering if that's just the shock or a symptom?

Hi @JessJj1986 i am sorry to hear of your diagnosis. I can’t comment on that part but sending solidarity for having a cancer diagnosis with small children - I have anal cancer (I’m 32) and my children are 5 and 1. My biggest worry is them, I’m not too fussed about myself! There are many people who will have a lot more useful things to advise you with in this forum but I wanted to say ‘hey’ as I know how much of a shock a diagnosis is.

Sending everyone good wishes today, I had what I think was a panic attack last night at the thought of what is ahead with surgeries and chemoradiotherapy but I am feeling a bit better today…

@Remaker honesty is the best policy, I was going to suggest you say your oncologist has said it's not suitable until I read your second paragraph. Just unbelievable how anyone could be so insensitive and hurtful. I'm so sorry about your dad.

@BeaLola it's strange how the people you least expect to just naturally are great isn't it? I have some neighbours who've been brilliant. I hardly knew them before my diagnosis but they texted me after I'd told them and said 'would you allow us to be your friends and help you out?'. Cancer takes away so much but I didn't expect to lose friends over it.

@ClashCityRocker I also have to remind myself that those living in Normal-land don't understand it. The one particular close friend whom I've now lost, after yet another lecture and I was wailing down the phone telling her I couldn't be 'positive', said to me 'oh but you MUST, you really MUST'. This was at a time when I was at my weakest, physically and mentally, and I didn't have anything left in me to even say anything. No-one insists someone with MS is positive, it is only for cancer that this is required.

@JessJj1986 welcome to our lovely group, so sorry you find yourself here. There are lots of ladies with BC who can help and advise you. I have ovarian so don't know if nausea would be a symptom for you, but I do know though that you must be in total shock.

I'll have a read back shortly, there look to be lots of new names popped up yesterday.

I'm thoroughly knackered after yesterday's drain 💤 I came in & slept 7pm - 8am & have no "go" whatsoever today. I'm meant to have a f2f appointment elsewhere with my consultant too so am debating whether to let my dad drive me & sit in.

They drained 6L this time, so less than the previous two & my right foot, that was swollen, has gone down over night. I'm also still peeing like a racehorse so I sincerely hope that's, in part at least, down to the chemo trying to stop any more accumulating.

The Dr who inserted the drain suggested a more permanent one for a while - he said there are ladies who'll have one for 30 days or longer & just drain a bit themselves when they feel they're swelling again. Do any of you have experience of that? I'm not sure I want something permanently attached that I could pull on but maybe I'm overthinking it?

@JessJj1986. I'm sorry hear of the nausea, it's not something I experienced. If it's bad, can I suggest you get onto your GP and request help? There are a whole load of anti emetics they may be able to give you. I found that it was a case of "oh, you've got cancer. Here's a big bag of drugs, which would you like?". Well, I'm not sure that was exactly their clinical reasoning, but that's how it came over. Also, I'm sure you know, but you need a form (I got mine from the breast cancer nurse) to make all prescriptions free for 5 years. Anything proactive you can do, you may find a help. I HATED not being in charge of what treatment they could/ would offer me, and anything I could do to be proactive helped my mindset x

A (non-NHS) practitioner said to me, “It’s not your job to be positive, it’s your job to be determined” (about doing things to improve wellbeing). I liked that. I had a meltdown on a friend who said it would all turn out “fine”. It’s already not “fine”!

Morning everyone! Good luck for those heading off for treatment or waiting for results.

@JessJj1986 sorry to hear about your diagnosis. I’m a bit older than you but have an 8 and 3 year old and am currently going through chemo for BC. Waiting is by far the worst time and I saw my GP who prescribed something to help calm me down.

@Icantfindanewname i agree exercise is key but I’m not sure where to start. I used to be fairly active but that slipped with the children. I’m hoping that after my last round of chemo I can start to build in some exercise before surgery. Does anyone know if any big gyms do a cancer discount? It seems contradictory that the time I need a gym the most in my life is when I’m at my finically lowest due to the cancer.

@Whattodotomorrow Nuffield Health do discounts for many different things - I get private health insurance via work and it means it would only be £40 a month - there's info on all the schemes they offer discounts with here: https://www.nuffieldhealth.com/gyms/membership#discount

Otherwise I expect it's just local authority gyms.

I feel a bit of a fraud to be here as I have localised melanoma, waiting for results of WLE - but wound is infected so currently back to hospital today to work out plan of attack - have a weeping 15cm x 5 cm wound on my head/face which is unpleasant but not a patch on chemo etc

@JessJj1986. One more from me, then I'll stop hogging the thread! As much as I hate running, couch 25K is free, I've just started it again this morning. Also I found barre workouts helpful before I got back to martial arts. If you Google "Rebecca Louise barre" she has loads of free YouTube videos which need minimal equipment. They can also fit in tight slots timewise 😁

Welcome Jess Glad you came to join us but so sorry to hear about your diagnosis. I am breast cancer patient but currently after a year no evidence of disease. The nausea I would imagine is very understandable anxiety.

Re the exercising it seems daft there isn't a scheme for cancer patients given it reduces reoccurrence 50%. You can get a GP exercise referral scheme for depression here which reduces gym cost, I don't bother as swim and as we go 3 times a week it's not much cheaper as scheme is twice. We currently go to Holiday Inn pool and here that's 59 pounds each a month, but it varies by area one I have seen is 27 a month. Its also worth checking if you are entitled to any benefits esp if no savings, we have savings so can only get ESA which took a few months to come through but got at support rate so 259 every 2 weeks which pays for mine. Depending on how affected PIP may be claimable though huge delays, we applied in Jan for DS and just got interview yesterday and no date in sight and was no warning and 8.26am call which cut off and they didn't call back. Macmillan can advise on benefits. Charities can help as well, SomethingToLookForwardTo was good for us giving us a weeks holiday in Cornwall, another night in a hotel and meal and a voucher for a boat trip though not used last one yet. Macmillan I think if you are low income also do a free grant as well of a few hundred pounds. Some charities provide things for chemo for free, Little Lifts is one.

Welcome @JessJj1986 and sorry to hear about your diagnosis. I have triple negative stage 1 breast cancer, just finished 5 months of chemo and now waiting for lumpectomy next month. This is the worst bit in my experience - once you start treatment it’s unpleasant and scary in its own way but the process takes over. My GP put me on sertraline which helped smooth the edges of the anxiety a bit, it’s not for everyone but worth thinking about. As someone said upthread once you have a cancer diagnosis they tend to be happy to chuck all the drugs at you.

Aaaaaargh. Apologies @JessJj1986 I tagged you in error about exercise suggestion - can I still claim "chemo-brain" two and a half years later??? I should have tagged @Whattodotomorrow. Actually, I should have been doing some work - working from home and easily distracted today... better crack on with paid work now!