Cancer Support Thread 87 - everyone here is so supportive.

[LemonDrizzle10]

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@EachandEveryone yes to the dropping things!!! Oh it drives me up the wall! Just constantly dropping things for no reason whatsoever.

@lucysmam yes, mine was gassy abdominal pains, I presumed it was everything going back in place. I mentioned it whilst I was being drained and no-one seemed concerned but it lasted a couple of days afterwards for me. I understand what you mean about another 'thing' to be concerned about but as you say, it's not a one time offer. At the drain when I was offered the semi-permanent one, it was the same procedure, just a different appliance fitted. My ascites gave me other issues - I developed horrendous haemorrhoids on top of everything else which then became infected as one had torn plus I could hardly eat. It's a miserable time and I'm really hoping the worst is over for you.

@Lisdeflores I'm hoping you get away as lightly as me on the tablets. I was started on 300mg a day which gave me crashing tiredness but this has been much better since I went onto 200mg from the second cycle onwards. They tend to start high and then reduce the dose if necessary. Hope you have a lovely holiday.

@lucysmam and @Fantasea

I just want to say how sorry I am to read your posts about the ascites. I couldn't believe the amount of liquid your bodies were producing, it must be absolutely agonising and also very scary.

I thought I had a lot of liquid with my weekly seroma draining of about a litre a time. Now I know that is actually far, far less than the excess liquids a body can produce. I found it very anxiety inducing so I can't imagine what it feels like to have multiple litres.

Much love to you both and keeping my fingers crossed that that misery will get sorted.

Thanks @EachandEveryone will ask about that.

Thankfully my bladder was on its best behaviour so radiotherapy was straightforward. 19 sessions out of 25 done now. I am looking forward to a time when I don't even have to think about my bloody bladder anymore!

@HauntedDishcloth

if you're triple positive, then you are ER+ which I think is a factor when they decide between 5 or 15 days of radiotherapy. Being ER+ is really, really good for prognosis. I mean in comparison to HR-neg BC.

I had a full mastectomy and full lymph node clearance. They said they would stick to the full 15 days despite pathological complete response because my cancer was so locally advanced at the beginning, huge mass and multiple cancerous nodes.

Maybe different hospitals have different protocols for choosing when to do 5 vs 15 sessions. I had my radiotherapy at the Royal Marsden, where I know the norm is now 5 for BC, but I met a TNBC patient stage 3 like me who also had 15.

They targeted 5 areas on my body. Can't remember the names, but incl the supraventricular fossa basically the lower neck and all the other breast areas.

PS when I say "like me", I meant stage 3. I am not TN but HER2 (HR-neg)

www.fightypants.com

my mate got me the fight through the storm badge from here. I’ve just ordered the ‘good boob naughty boob’ t shirt to wear to radiotherapy 😁

@LemonDrizzle10 omg I need that t shirt 🤣🤣🤣🤣🤣

@EachandEveryone I drop about one piece of crockery or glass a day. I’m not allowed up ladders by DH who is worried I will break another bone after my ankle dislocation on the first bout of chemotherapy. I wander about forgetting things and struggling to find words. However I can still do killer sudoku and crosswords, and listen to friends worried about stuff.
I am obsessed with the recycling. I think I am turning into my DF who used to get all his bins ready days in advance. But it makes me feel more relaxed knowing it has been done.

@LemonDrizzle10 I have the fighting pants on pin badge, it’s on my work lanyard now and I love it. Now I’ve seen all the other pins there’s so many I want!

They’re good aren’t they. I love the mugs too! Made me smile this afternoon.

@SummerCycling your kind words are very much appreciated. I'm so sorry to read about your seroma too, a litre from that area sounds shocking to me. This all happened to me prior to my surgery over two years ago now and thankfully has never returned.

@EachandEveryone I think I have broken more crockery and glasses in the last three years than the rest of my whole life. I forget everything - things I've bought, things I have to do, where I've put things, the list goes on. I've bought a large diary and have to record everything for each day and tick it all off. I've put it at the bottom of the stairs so I see it several times a day, otherwise I'd probably forget that I had it too!

@TopOfTheCliff I obsess over rubbish and recycling too. In my diary I have 'assemble rubbish' the day before it's collected and then 'put rubbish out' for the actual day! Sometimes adult DD or her bf will put an empty coke can in the main bin and I have to fish it out for the recycling, it's got to be right. It must be a side effect of chemo and cancer, rather like the out of control online shopping!

@Fantasea thank you for sharing your experience with me, I really do appreciate it. As much as my friends will listen to me rant and moan about it, they don't really "get it". I have my fourth chemo tomorrow morning so hopefully that will have further impact on it.

@SummerCycling it's utterly miserable, but also fascinating that the body will hold quite that much excess fluid. My feet and legs ballooned with the first time, presumably because it was left so long before anyone would commit to doing anything about it.

I had to google seroma - they look (from google images) to be just as uncomfortable tbh, there's less space up there to fill so I'd imagine it gets there pretty quickly too.

My hair, that has been clinging on, has started to come out faster. I've had a good sob in the shower & am about to comb through it. I'm hoping not too much more comes out tonight, I won't have time to do much about it in the morning other than clip it up & hope there are no patchy bits 🤞 I didn't think I was that bothered, but I really am 😢 I'm holding onto "it grows back" and hoping that I'm not one of those who it doesn't grow back for!

@lucysmam oh you're very welcome. Losing your hair is so hard, mine started to shed after my second chemo so I'm hoping that yours hanging on is a sign that it will grow back quickly for you. I wasn't brave enough to shave but instead DD cut it short all over, well what was left, and that made me feel a bit better.

@Fantasea perhaps the recycling is a control thing? Being able to sort out all the crap and get rid of it feels sooo good! With DH away and not messing up the house I am making good progress on tidying up. He will get a talking too when he gets home! So much of my time is wasted clearing up after him. I am doing 15 minute bursts downstairs in his lair and it is beginning to respond. He just needs a better system for his tools and fixing and decorating stuff.

Feeling very cross with myself. Had the dreaded insomnia 2 nights ago and was awake for about 4 hrs in the middle of the night. Was so tired last night and sound asleep when my alarm went off at 7.30, because someone was coming at 8am to repair my heating (it’s winter in Australia). Except I didn’t read the email properly they’re coming at midday. I could have still been asleep!

@Fantasea my local council has started a new service where they collect various bits that won’t go in the regular recycling, like old clothes, soft plastics, batteries, electronics. It’s fantastic and I am determined to use it but of course my next scheduled pickup is the morning after chemo infusion day! Poor DH has promised he will do it all and follow my (detailed) instructions on bagging and labelling as my hands don’t work properly for a few days after infusion.

Top It's funny as you said about rubbish and recycling I had just told DH that we have a target this weekend to fill all 3 bins, green, blue and black. What have our lives become? 😂Really living the dream and I have no idea why I have become obsessed with having the bins full, guess its one thing can control but I feel hugely disappointed if a bin is 3/4s full.

Lucy So sorry about your hair, it's horrible that part. I did equivalent of cold cap so kept 40% but I still had lots out around then and cut it shorter. I didn't think I cared about my appearance either as someone who never wore makeup or dyed my hair etc but I soon realised quite a bit of my confidence had come from it. And it just felt like cancer taking another thing. I am a year on now and hair is back thicker than before, will be another year before its back how I like it but it will come back in time. The only good thing is washing hair is much quicker. Sending love. It's worth getting hats or a wig or whatever you will do next, I just did hats and still use some.

Hi everyone. @Remaker suggested I could come along here from my thread. I’m not diagnosed yet and obviously may not be, so may not fit, and sorry if it’s not right for me to be here. I’m just really struggling with bowel pain and symptoms and my two week wait colonoscopy (after a positive FIT test) is going to be four weeks (one week in and no date forthcoming). I’m really scared and not coping with daily life at the mo. Hence posting in the early hours of the morning… 😪

I keep calling the hospital to chase it up but can’t get through.

Hi @MagicVanillaBeans I’m in Australia so it’s middle of the day for me! Sending you support for the waiting, it really is a tough time. I hope you manage to get a cancellation appointment.

Thank you @Remaker - Oh I hope so - if they would only call me or answer the phone I would ask about a cancellation! It sounds from the other thread like the system is much better where you are.

Hey. Good thread - I'm always up for a rant and whinge!

Got a form of bone marrow cancer/disorder called myelodysplasic syndrom with some nasty looking mutations. Basically means the bone marrow isn't producing blood cells properly. Symptoms are anaemia (affects red and white blood cells plus platelets) - so fatigue and weakness. Also intermittent bone pain, neuralgia, insomnia and a few other things. Long term prognosis is poor, with medium to high risk of turning into acute myeloid leukaemia at which point I'll be getting my stuff in order PDQ. Living (ish) day to day.

Best wishes and good luck to everyone.

When my hair started falling out, I overcompensated with fashion, DD told me that “Cancer has made you stylish”!

Welcome to new posters. @MagicVanillaBeans trying to hurry things up is soul destroying. I have to admit after chasing two hospitals I did in the end start to feel as if there was no point, they were just going to do things at the pace they were going to do them and nothing I did would make any difference. Not saying you should give up, it would be great if you did get some success! Also fingers crossed your symptoms are something else.

@SierraSapphire dd1's told me I ought to channel my inner Taylor Swift in the Wildest Dreams video & rock a headscarf with a bright red lip...so I'm going to try it & see how it feels.

I'm also going to follow up again about wigs since I've heard nothing.

I'm tired today - it was playing on my mind most of the night so I didn't sleep well at all <yawn> anyway...off for chemo number 4 when my taxi arrives. I hope everyone has an alright day 😊