Cancer support thread #77 - newbies welcome

[InOtterNews]

I couldn't see new thread so here we go...

Welcome friends old and new, to the most supportive thread on Mumsnet. Everyone is welcome whatever stage you're at (fears, diagnosis, treatment). Introduce yourself and say Hi

Good luck to everyone having treatment this week. Hugs to all - especially if you're feeling rubbish (physically, mentally, or waiting for results - ugh)

Thanks Thymeout, interesting that this is standard in other countries. I spoke to the GP & they prescribed propanol and Zopiclone.

At the moment I'm in constant flight mode. I'm obsessing with all the sensations in my body which is not helping. Ironically I felt fine (swallow aside) until they told me it was cancer, now I feel like literally feel the tumour growing and spreading. My body keeps going into shock with the next bit of news and my teeth start chattering uncontrollably, my whole body shakes.

I'm so sorry to just keep talking about myself btw. It's really nice to hear other people's experiences.

*Quinin - Yes. I have a friend who works at the big cancer hospital in NYC and he was surprised to hear it wasn't standard here.

Do you have an allocated CNS/Macmillan nurse? Mine was brilliant and a great listening resource, but some have been redeployed to covid wards. The Macmillan website has helpful nurses you can ring.

I was given paroxetine and valium till it kicked in. I think others on here are on beta-blockers, like you. Breathing exercises help, too.

Mega sympathies. It will get better when you have a treatment plan. I promise!

@BadEyeBri I've got some flammazine and it's not working.
I've also got flaminal hydro which hasn't done anything either - it cleared up the radiotherapy damage in two days before once my oncologist contradicted the radiographer that told me not to use it there.

@quinin Don't ever feel bad about posting here, if it helps you then do it and it might also help someone else too.
The point between diagnosis and treatment starting is really the absolute worst. You have nothing really to do except think about it. Once treatment starts and you have a routine going then you can start ticking off the treatments and look forward.

@Alittlewornout That is a big project you have there and I know you said you were hoping to put off the transplant but can't help to think it's better to crack on and deal with it asap.

@quinin I read obsessively in the fist month and more recently I've got a private counsellor - although for me cancer is more of a catalyst for change than a root cause in itself.

Always a tonic to hear from @TopOfTheCliff. Reminds of the movie where she says 'I'll have what she's having ...' My dh and dd are like this - my illness doesn't phase either of them - they just assume it will all turn out well. I can't do that - but I have made some sort of peace with it.

There are 2 strands here - the existential angst of the illness and prognosis, the uncertainty - and the actual illness and treatment in terms of feeling ill and quality of day to day life. I find I am so poor with the latter I can hardly consider the former. I don't think I'd do well under torture.

Wrt family guilt - I do worry that I'm not really 'present' a lot of the time. Dd is year 11 and I had hoped to support her with schoolwork but I haven't done a thing. Sometimes we just sit and show each other rubbish on our phones and just doing that is tiring! I've played a couple of games of chess after we watched The Queen's Gambit. She turns 16 this summer - I want us to enjoy it.

Feeling a bit better day by day now (week 2 of 3) and thinking about the garden again. Getting into my 2021 Flower Festival theme and starting to browse for flowers. Just annuals - because I actually like staring over each year and the other spaces are stuffed. Probably go back to veg next year - but any favourite annuals to recommend?

@BitOfFun did the drugs help you out in the end?

@MrsPnut I am in awe of your fortitude!

Hi guys checked in last year when i had breast cancer. I had a ultrasound yesterday that found a cyst on my left ovary. Im at additional risk due to breasþ cancer and my sister had womb cancer.Few quick questions.
1Can they tell from an external ultrasound if mass is cancerous? I know they could with breast cancer but not sure if ovarian stuff is the same?
2 would a CA125 test be run as part of a standard blood screen?
3 i need to wait 6 weeks for a rescan. Does that mean they are not worried?
Anyone with advice would be great :)

@Redannie118 I have a cyst on my ovary seen on a CT scan but they didn't know of it was cancerous or not until I had the Pet scan. It wasn't thankfully.
I did have a CA125 test, just alongside my FBC and U&E but it was a separate tube of blood.
I would take the 6 week wait as a good sign.

@Acinonyx2 Not so much fortitude as sheer bloody mindedness.

@quinin you don't need to apologise for posting about yourself, that is what this thread is for. Also, as @MrsPnut says, your experience is very likely to be helping someone else. I was exactly like you when my symptoms started, I had terrifying anxiety and would shake and sweat with it. I would wake up in the night shaking but would 'wake up' before I could get my eyes open. It was horrible. The GP prescribed propranolol which really do take the edge off, I am still anxious in my head but don't have to be so anxious about my physical symptoms if that makes sense.

@Acinonyx2 I do sympathise with your exhaustion, I am finding that the chemo just wipes me out even on my 'good week'. I don't wake up until about 10am most days and also sleep for a couple of hours most afternoons. I don't have school age children so it is easier for me. Just spending a bit of time with your DD whatever you're doing, even if it is just watching a few videos together will mean you are 'present' in her life. My DD is 25 now and talks fondly of times we laughed together when she was a teen rather than the times I helped her with homework (which I did do a lot). I know what you mean about guilt though, I think motherhood comes with guilt regardless and to have a cancer diagnosis on top of all of that is just pants.

@MrsPnut thats incredibly helpful thank you !!! Ive just had a full count done( for something else) but im going to ring gp and ask them if they did a CA125. Thanks again :)

@Acinonyx2 I had to laugh at "taking chemo well". Quite! I think that's what my team are saying, and I have to admit that on my really low days I think very uncharitable thoughts about them all. I actually resent my onc for making me feel horrid without having to experience any of this herself. Ridiculous, I know. Am also the same in terms of only really managing to focus on the misery of the current side effects - I've stopped thinking about bigger picture, longer term worries for now. Just have to assume this will prove to be a phase that gets relegated to the history books at some point.

@quinin I was similar to you in the early days. It's awful. I was physically sick most mornings from the anxiety, which is something I'd never experienced before. Hang in there. Take the meds if they help. Know that you will get to feel normal again, possibly sooner than you expect.

@KentishMama, brilliant to hear your update - it gives me hope!

A week post chemo 4 (of 6). Not sure what to make of the Docetaxel. My mouth and throat are so sore - I didn't eat pineapple this time and am regretting it. Tired, foggy. Can't sleep, muscles constantly tense. Odd bit of reflux. Tender fingertips (wtf??). And slight nosebleeds - not sure if this is from the first Herceptin, or a chemo thing? I'm not in terrible pain and am up and about but really in my own little fog - definitely mum guilt about not being fully present with the kids (or only having stamina for shorts bursts of engagement). Just a whole pile of annoying symptoms. Waiting for time to pass.

@quinin I think I am the same stage as you in this awful process. I am very weepy today, my friends have been lovely, sending me supportive messages and that keeps setting me off again. But my take is better out than in, think I have been trying to be too strong and focused on how everyone else is feeling.
I think the advice of speaking to your GP is good, I have just been prescribed some sleeping tablets. Which I hope give me at bit of rest. @backformore is right this level of anxiety will lessen in time. At least thats what I am hoping for.x

@quinin this thread is a great place to download your worries. I always have such admiration for those who take time to greet everybody on the thread as I can’t keep up. It’s fine just to put your thoughts into words.

I found I could switch my head off and not feel anxious but when I was talking about the situation in the early days I would feel intensely nauseous. That was my version of anxiety I think.
I’ve been in denial about the radiotherapy. I told myself it was easy and I was through in 2 weeks but now I am sore and my arm aches and I realise I am going to have to wait the full four weeks to feel better. It’s a great excuse for an afternoon nap though.
I’m bored of all this and want to be more active. I tried a twenty mile bike ride in the sunshine at the weekend and it was too soon.

@BitOfFun I do hope your migraine has cleared. They are so hideous!

Sending positive vibes to all.

PS @backformore the Herceptin does cause the nosebleeds I still have them now after dose 8.

Thank you everyone for all the supportive messages and I'm sorry others have felt this way, it's bloody awful.

The propanol are helping but I made the mistake in googling and there was not much good news to be found. I just want my old life back, the one we're I thought acid reflux was the biggest problem. I listened to so many bloody podcast and read book after book about gut biomes, why could it not just have been that?!

I'm so shocked I have, at best, a stage three cancer and life will never be the same again.

Oh @quinin sweetheart I totally get you. Mine is a different cancer but thought my slightly low haemaglobin was just an iron deficiency. In the space of a month my only option for survival is a stem cell transplant. Like you and everyone else here what I would give to go back to my life before. However we have all sadly been dealt a hand we could never have predicted and dont deserve. Do not google( says she who has scared herself stupid) often info is out of date. Also you are a statistic of one, all that matters is your personal journey.
Although I am a stranger, know that I am holding your hand, reach out to people in real life. In the last 24 hours I have been overwhelmed by peoples response to me. I know over time that may change but for now it helps even if it makes me very weepy.x

Hello to everyone and welcome to more new members. We're all in the same boat trying to muddle through and it helps in some way to know we're not alone.

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Sorry to hear you've had & are having MH issues @Acinonyx2

A wave to @KentishMama from a former Kentish Maid I grew up in one of Canterbury's satellite villages ,went to school in the city and still love Kent though I don't live there now.

I'm halfway through my 6 chemo sessions now & hopefully have said feck off to FEC!! My post-chemo sickness was reduced to about half I experienced from the previous sessions which must be due to the travel-sickness patch, of all things. I so want to hope the side-effects of the new chemo won't be as bad but know better than to do that. @backformore - the hands thing could be due to neuropathy (nerve damage) as I've read that can be an effect of Docetaxel. I've got that next and two other drugs I can't remember now due to chemo brain.

I should be having a scan to see if the chemo's done anything. I gather some people can feel a reduction in lump size but I don't want to go poking about. My surgeon refers to cancer as "trouble", as in he'll need to remove the "troubled area" and hopes the scans won't show "further trouble"

I will come out to the thread as having an interest in gardening and growing stuff too. Got quite a big garden & this year will just let what's already there do its thing. Apart from an experiment I've just started forcing some rhubarb under black buckets, even though I've still got rhubarb in the freezer from last year. I usually love rhubarb & will be quite upset if it works but the chemo taste thing sabotages it

@backformore Ah yes - let's talk docetaxel . I've switched from that to EC now. I used to think all the joint pain was from the filgrastim injections but I now know it was dox. It's also infamous for neuropathy - that's the pain in your finger tips which I still have - some of that can be permanent but hopefully mostly not. I had dox reduced 10% due to neuropathy in my feet.

Also mucositis - e.g. pain in the mouth so ate soft bland foods. This peaked 2nd cycle then faded off - no idea why. Diflam mouth wash has some aneasthetic in it.

Had a constant bloody nose on Herceptin but it hasn't entirely gone and I think it might also be partly a chemo thing.

Chemo side effects are really an ever shifting laundry list aren't they? I too have had some dark thoughts about my lovely drs. In my dreams at my next consult, I would shake my dr and demand to know just what part of 'this is unbearable and I've lost the will to live' sounds like I'm tolerating this well?? In my dreams, ha!

@quinin @Alittlewornout Starting a definite treatment plan definitely helps with the anxiety - although you may end up complaining about your treatment. That might seem ungrateful since it's supposed to be helping you but I find that doesn't stop me at all so feel free. As said though but very much worth emphasizing - we are individuals - not statistics.

@TopOfTheCliff - how many times have we told you to take it easy? God I hear you on the boredom though. I'm so utterly bored and boring. I can't seem to focus or apply myself to anything but I really feel the lack of it. Before dinner I roused myself to listen to music while colouring in a Star Wars colouring book I bought dd years ago. Felt quite productive

@FizzyOrange I'm trying to still get out walking but it is really getting tough now. I am just SO tired. Yet I don't sleep well Watched an hour of TV with dd as quality time today!

@HauntedDishcloth 'troubled area' Ah yes - won't it be great to taste food properly again?

@HauntedDishcloth which motion sickness patch do you have - I'll try anything!!!

@HauntedDishcloth are the two other drugs tristuzumab and pertuzumas (sp?) - also known as Herceptin and Perjeta? Those are the two that I have with the Docetaxel. They're addressing the hormone receptor bits of my caner (triple/HER2 positive). The good news with them is I think the side effects are pretty minimal (apart from the Herceptin nosebleeds so far!)

@Acinonyx2 I hated Lapelga injections on FEC but the steroids I've been given with the Docetaxel weirdly seem to have limited - or at least postponed - the soreness this time. Weird!

I've just got a lidocaine mouthwash and going to give that a try - it's so wearing feeling swollen and sore! The steroids made me super hungry early on, too - so different now. When you say the soreness peaked in the second round, was that after the treatment itself, or did you have a sore mouth the whole time (ie, almost 6 weeks)?

@backformore it was constant but peaked in week 2 after treatments. It was very tedious while it lasted (had it both ends ). No idea why it faded off. I was super hungry too but now not eating much (got some bodily reserves to sustain me though )

I also had the Herceptin/Perjeta/Doc cocktail. Herceptin and Perjeta are both targeting Her receptors (I'm Her+ only). Doc is made from yew trees - it's practically a herb!

@quinin I completely understand what you mean - I am the same, at best a stage 3 diagnosis (I am too scared to ask what stage I am but it is 3 or 4) and life for me will never be the same again. I have OC and had awful reflux last summer which was my first symptom. I scared myself silly worrying I had a stomach ulcer and how I would ever manage to get through an endoscopy. Now that seems so trivial. I used to google all the time and it really is the road to madness. A lot of the information is out of date and also statistics have to use 'old' numbers and so don't take into account of newer treatments and drugs that are being developed all the time. Sending you a hug as I know how hard this time is for you xxx

@Acinonyx2 walking? Oh my word, you are doing loads better than me! I am much too tired for that but sometimes wonder if it would help. When I go for one of my blood tests I always think it is a long walk from the hospital door to the blood test department!

@Acinonyx2 The patch is called Scopaderm. It lasts 72hrs & I feel quite cyber wearing it on my neck!

backformore as others have said, it's the docetaxel causing the finger tip pain (neuropathy). When I had it, I wore ice boots and gloves - unpleasant to wear (stock up on painkillers beforehand) but I didn't get any neuropathy at all, so was well worth it. I know some ladies suffered neuropathy very badly, and struggled to do buttons up, etc for months. The gloves and boots are uncomfortable to wear - and when you start to get feeling in your fingertips/toes, you need to swap to a fresh frozen pair - I would go through 3-4 pairs each time - but they worked! Ask your unit about them next time. I was actually quite relieved to have abandoned cold capping by that point (didn't work for me, so I stopped using it), as I think it would be hideous to cold cap, and ice boot/glove at the same time!

As others have also said, anxiety is normal during testing, diagnosis and treatment. I'm still taking mirtazipine now, and just find it helps me to function (and not catastrophise/panic about it coming back).

I didn’t want to start a new thread because it feels a little bit like leaving Otter behind. I always think of this group of posters as ohana from Lilo and Stitch.
However, we are so close to 1000 posts therefore new thread below.

www.mumsnet.com/Talk/general_health/4181702-Cancer-Support-thread-78-Newbies-welcome

Redannie, sometimes the only way to tell if an ovarian cyst is malignant or not is for it to be biopsied.

Does the C125 give a good indication of malignancy or not? Not really. The OC forums I’m on have many members who were lulled into a false sense of well-being after being told there results didn’t indicate OC yet they were then found to have OC after surgery.

It’s what happened to me and I’m told women with low serous OC are more likely to have normal results after a C125.