Cancer Support Thread 94 - Sweetness and light - the two noblest of things.

[LemonDrizzle10]

@tilllly and Daisy.

@lucysmam @MothralovesGojira @Enigma52 shall we all just take turns at holding them down and giving them a slap? Managed to see Oncology today. The lumps are my tumours spreading but apparently it’s a slow spread 🙄 My kidney function has improved but will be getting a tube in my back into my left kidney and attached somehow to this will be a bag where the will go. Now given I poop into a bag already if it wasn’t already adding insult to injury because one kidney work I’ll still have too pee as normal - wtaf? He is considering radiotherapy after that and has referred me for clinical trial. The tube will be placed on 3rd or 4th June - 3 days after my wedding- so much for a wee
motorhome break.!!

Ive just got back, chemo bag in tow. Thats gonna be fun. I cant drink or eat anything straight out of the fridge and even the tile floor is giving me pins and needles. I was teary going in there and it felt different to last year, more cramped and no massage therapist or constant food and drink. My favourite nurses have gone as they were agency and the Trust is cutting back. Lets see how it goes

@EachandEveryone

My chemo ward is understaffed. Apparently 13 members of staff have left in the last two years.

It's been a poor experience for me. Been a couple of mistakes in my treatment and some rough and unkind treatment. My first treatment set the tone. No talking to me and reassuring me. I was just treated like a picc line. I've ended up on sedatives to cope with it.

I cant believe hw its changed in just a year.

Crikey our chemo suite is still staffed by mostly the same, familiar, faces. I'd be gutted to walk in & not have the usual cosy chat!

@EachandEveryone you can share my box of tissues if you're feeling teary 🤧

@Whatevershallidowithmylife can you plan getting away at all? What will the tube do?

I'm having my all day craft day today - just need to manuvre my arse & collect my supplies from the living room. Literally nothing else but clothes washing and make something tasty for tea for me today!

I'm going to email the union man on Tuesday since Monday's a bank hol and ask him to give me a call re their latest stupid request. I've been working out timings & even if my dad takes me it'll still not give me much time because of roadworks right up to the hospital 🤷‍♀️, then come back grab bag & leave for the train 🙄

I'm the only one of us out if I go to work then for my meds, & it seems wrong that it's me who's the fucking cancer patient but they all get to get ready in a relaxed fashion & I don't because I have to scurry here and there first.

@lucysmam the tube takes the urine from my kidney into a bag on my leg. Since you’re a crafter - Any suggestions on how to put flowers onto a very small 2 tier wedding cake? Real/artificial flowers? Thanks

I think I'd use artificial ones, with a little wire that can poke into the cake. Arrange them first until you're happy, photo to work from on the actual cake & go slooooooooooowly!

I'll see if I can find a link to what I mean...

These are not at all what I was looking for but are pretty!

Hopefully I've formatted that correctly!

Something with a stem like these is actually what I was looking for & you should be able to grab off a shelf 😊

Oh that's perfect, exactly what I'm looking for! Thank you soo much! My head and heart are artistic but this absolutely doesn't feed through to my hands 😀

They're lovely aren't they! I've bookmarked the site to go back to - I have zero use for them right now but you never know...

@lucysmam ah you never know 😀

Has anyone had sulphur burps as a side effect from chemo? My mouth tastes horrible even my daughter can smell it. 😢

Hope everyone is enjoying the weekend as best as you can.

I fucking detest boy hair. It is not me. Wish I'd just left it a fluffy, sticky outy, do what the fuck it wants, mess. Ffs 🙄

I shall add it to this week's list of annoyances!

@catmomof3 I didn't, sorry. I did have it when I was full of fluid though - can't remember what helped. That was no use to you whatsoever, I'll shut up!

After the sulphur burps I was up all night with diarrhoea. Think I managed a total of 10 minutes sleep as every time I laid back down I was back on the toilet again. Got my Dad popping something over later to help. Luckily it's not as bad as it was last night but I have a feeling it was either the marmite crisps that set it off or the naan bread I ate. I plan to spend the day in bed trying to catch up on sleep as I am exhausted. I might have some toast later but am a bit scared of setting my tummy off again so might not eat anything today.

Something plain might be ok? Toast with no interesting toppings/banana/plain crisps kind of things? You can't eat nothing, you'll waste away like the poor bloke on the Pot Noodle ad years ago!

I'm still sulking with boy hair. It's fluffed up again overnight 🙄 My good straighteners are too wide I think, to tame it, so I'm going to have to practise with the tiny (not as good either!) ones and try to make it look ok.

@catmomof3
Sadly diarrhoea is a standard chemo side effect. Once you've had diarrhoea three times then you should contact your chemo unit and tell them but they will probably tell you to take Immodium Instants. They were my best friend during chemo as they should stop the diarrhoea in it's tracks and let your digestive system settle a bit so you can eat. Out of control diarrhoea isn't good for you and your chemo unit will want to know - phoned mine at 2am for advice the first time because I was desperate after a whole day of it. After that I kept a supply at home and then took Immodium as soon as I had 3 episodes - get the Instants because relief is much quicker and works better for chemo side effects. Don't forget to keep taking your anti-sickness meds too because it's all about trying to get a manageable balance of the side effects.

With regards to food @catmomof3 then plain is best and stay away from your very favourite foods because you can be put off for life. Yes, it's shite but it's just for a short while. I survived on oatie puffs, caramel vegan yogurt and apples with plain chicken or fish for meals. I now can't even look at oatie puffs or caramel yogurt but I'm ok with everything else. So swap marmite crisps for ready salted, try toast, avoid really bready stuff like naans/pizza crust etc and keep hydrated with lots water/squash and drink stuff like mint or ginger tea.

@MothralovesGojira I'll let the chemo unit know if it continues, my dad did drop over some diarrhoea relief tablets which seem to be helping but I'm gonna pop to the chemist on Tuesday to get some Imodium instants so I have some on hand. I did check my temp and that's ok. I do think what I ate did trigger some of it as I was totally fine till around 9am but at least I know to not eat them again until I've finished chemo.

Gonna have some plain toast in a little while and see if that stays inside me or not. Fingers crossed it does.

Hello, newbie here. HER2+ BC, 3-weekly TCHP Chemo DONE (which I never thought I would get through, somehow managed it all, yet still ended up in A&E with serious neutropenic sepsis for 7 days). Anticipating One-breast-mastectomy + DIEP reconstruction next Friday (absolutely terrified!), followed by 3 weeks minimum of Rads and then (the CNS was pretty sure) 3-weekly Kadcycla. I was unable to work since January, the side effects were too much!

I wanted to know whether anyone has been on Kadcycla and if they managed to return to work? I was put on unpaid leave in Feb as I was still within my probation period, with the promise that my job would be waiting for me when I return. The contract ends next January though so I am trying to work out whether I should just throw the towel in (& not bother returning) or battle it out. HR at mine are not that great!

Also, anyone had mastectomy+ DIEP reconstruction? How was your recovery? I am trying to not be scared (but I am!) because I am so fed up of this disease.

BTW, to those experiencing diarrhoea my AOS prescribed me Buscopan for the cramps, and Imodium. I found peppermint tea to temporarily help with nausea/sulphur burps/foul taste in mouth though nothing took it away permanently.

Fingers crossed for all! <3

@catmomof3 how did you get on today? Did you get something to eat?

Hello @mesocortical and welcome. Sorry to hear you've had such a tough time on chemo. I am also having treatment for HER2+ BC. I'm not on Kadcyla (just staying on phesgo), I vaguely know someone who is on it and she said it makes her feel rough for a few days but I got the impression it wasn't as bad as the initial course of chemo. Perhaps see how the first few cycles go before making any decisions?

I didn't have reconstruction, I have spoken to a couple of people who had DIEP. They both said the abdominal wound takes a bit of time to recover from, but they were both very happy with the results and said they would choose DIEP again.

Sorry that may not be much help - hopefully someone with direct experience will be along soon.

@catmomof3 I hope you are doing okay. I had really bad diarrhoea on chemo and was told by my unit to ring the hotline for advice as you can lose a lot of fluid/salts quickly, and a couple of times they also wanted to assess for infection.

@mesocortical I’m pretty new to this thread and at the beginning of my breast cancer treatment. Mine started with a single mastectomy and diep reconstruction. I had the op on 16th May (just over a week ago). I would say first couple of days are pretty rough (no sleep because they check the flap every hour), but my drains came out on day 2 and I was discharged on day 3. Took me almost a week to be able to stand properly upright. Take all the drugs you’re offered - I’m just taking a bit of ibuprofen now and I’m pretty mobile and managing short walks and to potter around the house.
Feel free to message me if you have any other questions about the surgery. Although I’m probably too close to my op to give you a proper sense of the recovery in the longer term. I was also terrified beforehand.

Welcome mesocortical So sorry you had such a horrid time on chemo and well done on getting through that. I also had breast cancer though not HER2 positive so don't know about that, I had a mastectomy with delayed DIEP reconstruction but the delayed is very, very delayed and NHS won't give it me until some time later this year from a 2021 first mastectomy so 3 year delay after being told 1. Mastectomy operation they said 6 weeks recovery but there was minimal pain and after 3 weeks I was back swimming. Obviously the DIEP is bigger operation and a longer recovery time. I was given a CT to check had blood vessels needed which I have and then photos taken but just waiting now. They told me 3 to 4 months recovery but someone else said you can swim after 6 weeks. Get painkillers in incase they don't give you any, I got none though second op they sent me private paid by NHS and I got a whole bucket full and could have started my own pharmacy. There is a facebook group on UK DIEP though I haven't gone on it much, sometimes I find its better to be la-la-la about these things than think about all that could go wrong. Most people do seem very happy with results though there is a further op offered about a year later I think to tidy up things. Get lots of cushions / fleece / soft things for after.

Radio I found really easy after chemo, just lying on a bed for 5 minutes with a machine whirring around you then get up and go home. Ours did the 3 week cycle in 1 week intense which was better as only go in 5 times rather than 15. Worth putting cream like Aveeno or similar on the area now and doing it all through radio. Also make sure you drink a lot in radio 2 to 3 litres a day to reduce dryness. I was back swimming a week after radio though found out later you are not supposed to but meh nothing happened. Can take vitamins again once off chemo if you want to. Strangest thing about radio was they expected you to walk topless over to it. 😱Best to wear separate top and bottoms but sure you are used to that. They liked it something you could get on and off super fast. Some people get tiredness a few weeks after but I didn't get anything at all.

Also it may be worth seeing if you are entitled to any benefits. Macmillan have a line for this, not used but heard recommended though they are making job cuts. But things like ESA and / or PIP are both not savings related. PIP is a bit variable if people get, I never tried but got contribution based ESA and chemo put you in support group for that.

Oh god Ive been up all night with terrible groin and abdo pain. I was terrifiedvof over dosing myself. Does anyone have any advice remembering its a bank holoday? Im covered in heat patches! It only seems to be on a night? Could it be the chemo kicking it? Day 3 today. Im so reluctant to ask for morphine as its never done anything for me inv the past. I wanted someone to shoot me last night. It was similiar to when I had a burst ovary.left side,