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

[LemonDrizzle10]

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Good luck today Twig and Flora

All the best for today Twig and Flora.

I have my mum visiting today and tomorrow. I'm very lucky that she's lovely, won't want waiting on and doesn't care a bit that I haven't been able to do the housework properly. But I find I am nervous, I think because I have lost so much weight and look dreadful, I'm worried that it will be a shock to her.

I am looking for some advice and I don’t know where to turn. My lovely mum had bowel cancer 2 years ago and we’ve just found out it has spread to her liver and she has multiple legions, the largest being 3.7cm.

I have a consultant appt on Friday with her but I want to be armed with as much info as possible. Her CEA level is 45, I have (stupidly) googled and this seems very high. She is in quite a lot of discomfort, has lost a huge amount of weight in a short time (12kg in 3 months), feels sick/tired.

If I’m honest, I want to know the worst so I can get all my crying done before the meeting and be strong for mum. Any advice/info or just a kind word would be much appreciated x

@TwigTheWonderKid & @Florabritannica best wishes for today.

@HansSolo22 I have no advice or info to offer but wonder if it would be worth a call to your mums GP re the discomfort she's in, or Macmillan? Maybe there's something can be done to help her.

We're off to Meadowhall today - school shoe and trouser shopping 🙈 My tooth is niggling away more than usual this morning so should be fun 🙄 It takes my teens an aaaage to leave the house mind, at this rate the place will be closing before we get out the door 🤣 So far they've farted about with false lashes and several outfit changes...dd1 is meant to be brushing her teeth & done, but she said that 20 or so mins ago 🤷‍♀️

@HansSolo22 the Ca125 is possibly caused by the bowel tumour. It’s a marker for other cancers as well as Gynae. My own ca125 was over 1000 when I got diagnosed with a Gynae cancer.
Really just so you stop worrying about your mum having another type of cancer.

You should ask about it, and the advice to involve MacMillan or GP is a good idea

It’s CEA not Ca 125. The CEA is specific to bowel tumours so it simply reflects the active bowel cancer. The tumour makers usually drop with chemotherapy if the tumour is responding. For breast cancer they monitor Ca15-5 but mine has been zero despite two tumours. It’s not very reliable which is why doctors don’t rely on it.

@HansSolo22 can imgently pint you at the family support thread? This one is really for patients going through treatment

See https://www.mumsnet.com/talk/life_limiting_illness/4729740-the-storm-part-3?page=4

Gently point, FFS

Good evening! I survived my first chemo infusion which all went smoothly. The worst thing, as anticipated, was DH’s attempts at banter with the nurses. Unfortunately there are no restrictions as to attendance by ‘carers’. Feeling exhausted now though the nurse said that was likely to be emotional as much as anything else at this stage.
@TwigTheWonderKid How did you get on?

@Florabritannica , glad to see today went well for you. I'm quite jealous your dh can go with you - we're not allowed anyone 😢 Thankfully I don't mind the couple of hours with my music, & there's usually someone who initiates a bit of small talk to while away the time.

I wondered about taking some crochet but tend to wind up tangled somehow in the line so probably not a great idea 🤷‍♀️

This is going to sound a bit daft maybe but, I am occasionally overheating - mainly my face & when I go to bed. Could that be down to the chemo? Or maybe hormonal? (I've not had a period in months). It's driving me a bit nuts. I like being snuggled up in dressing gown or hoodie on an evening but feel like I have my own central heating going on lately 🤔

We successfully bought school shoes - first pair dd2 tried on 😱 They're more ballet flats than I would have liked her to have, but there was no whingeing so I'll take the win. Trousers to be continued...there was moaning at every pair & a reason not to buy them 🙄

Unfortunately, I have fallen in love with the most rediculous pair of boots ever, in Kurt Geiger. They're knee high & spangly & a thing of absolute beauty. They even have a fairly sensible heel height! Goodness knows where/when I would wear them but they really made me smile (dd1 says buy them anyway if they made me that happy, but that's silly, & all my personal money spent too! I may obtain a cheap pair & rhinestone them though 🤔

Buy the boots! You know you need to.

🤣 you sound exactly like dd1!

She is wise beyond her years. You can wear them to chemo with a long skirt.

@TopOfTheCliff thank you, I didn’t realise there was one so appreciate the link, apologies for posting here - my head is all over the place. Thank you to everyone for your advice and kind words and I wish you all the very best with your treatments. I’m sure the support on this thread has been invaluable to you all xx

@lucysmam yes I believe (buytheboots) hot flashes can be a chemo symptom. I had a lot of flushing and blushed cheeks, my surgeon even commented (buytheboots) during an appointment about something completely different.

<cough>buy the boots<cough>

@AllotmentTime thank you, I wondered if I was going slightly nuts (entirely possible tbh!) & haven't googled yet to see what delights that throws my way.

I'm seriously considering the boots. They are the kind of thing I would have out so I could see them & stroke multiple times a day. I'm not convincing anyone that I really don't want them am I 🙈

@lucysmam the boots are calling you..they may need you

Link to boots please!

@lucysmam I had a steroid rash on my face the day after chemo which persisted for a few days each time, could it be that? My face was full tomato, and often would go back to normal on one side for day with the other side still red hot! I remember it was February and my face was so hot I came downstairs to sleep on the sofa as it was cooler, the central heating was off but that was preferable as the heat coming off my face kept me warm!

@Florabritannica these boots They're epically sparkly irl 🥰

@Fantasea I don't think so - there's no rash to go with it. Just a short flash of stupidly warmness every now and again & the need to stick my feet out from the covers thank fuck the monsters haven't got me yet! I walked round Meadowhall playing hokey-cokey with my jacket on/jacket off on repeat today 🙄

@lucysmam I am in my late 50s and have terrible hot flushes which are due to my menopause. If you haven't had a period in ages it could easily be hormonal as menopause can start at around 40 I think.

@lucysmam those boots are fabulous and have cheered me up on my return to hospital with an infection in my surgical wound. I’m really down about it and struggling to pick myself up - my mental health is taking a battering since diagnosis but think this is the lowest I have felt. Thank goodness for sparkly boots to bring a bit of cheer!

Truly divine boots. Very versatile. Would go with everything. And would make you smile every time you put them on, which is priceless.

@lucysmam I only caught a quick glimpse of the boots before my screen was flooded with pop ups screaming ‘we ship to Australia!’ but they look great, you should definitely buy them.

I’ve also been wondering if my hot flushes were chemo or hormonal. I’m often freezing when I go to bed then I wake up soaking with sweat, yuck. Throw the covers off then an hour later I’m awake frozen to death again. And my face randomly turns a fetching shade of red - often just on one side.

I got my portacath removed yesterday. It was a positive experience. The device was inserted above my right breast so I had to have one arm out of my gown so they could access it. After surgery they kept getting me to sit up for various reasons and then the gown would fall down exposing my boob to the world. I was feeling a bit embarrassed that there was a man in the bed opposite who was getting an eyeful. And then they gave me my glasses back and I realised it was a woman with short hair. I’m glad I didn’t mention it!

Hi everyone I hope you're okay? Has anyone stayed in hospitals for a long time? I got told today it'll be another 2 weeks of iv antibiotics minimum, I've had 3 operations now to was the wound out and they're doing another one tomorrow.

I feel so lonely and sad. My DH is away for a really important work conference and he coming back tomorrow so I'll get some visits hopefully on Thursday.

Would you feel weird if a friend who was in hospital messaged you to see if you could come and cheer them up! I had a few offers when I was first admitted but I was really unwell so just left them on read.