Cancer Support Thread #81 Newbies welcome

[TopOfTheCliff]

This is a kind and friendly place for those with cancer or those worried they have cancer (or who used to have cancer) to hang out.
Please introduce yourselves and chat away. No issues are too big or small here.
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Hi all, welcome to the newbies and returners, sorry you find yourselves here.

@TwoBigNoisyBoys hope the anxiety has lessened. It's so horrible. I was all over the place at diagnosis. My body kept randomly going into shock, my teeth would start chattering, my body would shake. I got some beta blockers & sleeping tablets which sometimes took the edge off but what really helped me was meditation. Insight timer and my headphones have been constant companions throughout.

@Ilovealido welcome. Hope you are coping, that's a lot to get your head around. I don't know if you have looked at alternative healing but I really rate the chrisbeatcancer.com website. It's full of people that have beaten their stage 4 illnesses but obviously won't appeal to everyone. I've been surprised it appealed to me tbh as it goes completely against my nursing background.

@JeanLannes hope you are more comfortable after the drainage & things start to settle down.

@Acinonyx2 glad the cough is improving slightly & the kadcyla discussion is useful.

My endoscopy had to be abandoned as they didn't give me enough sedation which seems to have become an annoying theme, so I'm booked for one under a general & asked for my port to be removed at the same time. The pain with swallowing continues accompanied now by a pain in my back. I can't work out if it's muscle strain or internal but I've always found distinguishing between the two difficult. Upper GI stuff is a tricky bugger. I have a CT booked for Tuesday which should tell me more.

@TopOfTheCliff thanks for the exercise info. Really helpful and good to hear you can go from zero to hero within a year. My oncologist said to stop exercising due to weight loss but I see now this was a mistake and I did a brilliant workout yesterday and felt amazing. I'm in the hunt for a PT.

@SewingBees my hot flushes settled about 7 weeks after chemo finished. I did wonder if it would trigger menopause but thankfully not.

@MrsPnut hope the chemo recovery is a swift one.

Sending healing vibes everyone ✌️

@quinin Thank you for the reassurance re hot flushes, and well done for managing to mention so many posters in your reply. I'm not sure how people do that - possibly the chemo brain prevents me from remembering all the details.

Welcome to all the new posters. The general consensus is it sucks to need to be here, but I have found it a great place for support, information and reassurances that I'm not going through this alone.

Today's challenge for me is trying not to feel bad for making my daughter cry. I thought she was going to take my headscarf off in a busy cafe at lunchtime and in my fear of being baldy in public I suddenly raised my voice at her and it shocked and upset her. She was actually just lifting it off my ear to whisper something to me. Oh the guilt.

Hello can I join? I’m 62, just had wide local excision and lymph node clearance. Er+Pr+Her2-
Doing ok thanks to great support from dh and wonderful friends.
Waiting to hear plan going forward.
Waiting I think for diagnosis is awful. I have had wonderful support from a good friend involved in a local support group- anyone struggling, please seek them out, often on notices in breast clinics.
Buddies etc to help through the tough parts.
Thank you to everyone for sharing their stories.

Welcome to all newcomers, no question or worry is too small to be shared here.

I am feeling rather relaxed today, we have been out for a rather nice roast beef dinner with a glass of red wine and sticky toffee pudding and ice cream. I’m sure had I been able to taste it, it would have been delicious.
I also managed to go out out on Friday night to see a gig and have some Greek tapas. Thankfully the venue had some seats so I could have a rest between pogoing.

Thanks everyone for the warm welcome. Yes I have a very lively 3 year old & at times it can be EXHAUSTING. I still can’t really believe this is happening to me. At least with the targeted treatment I can do more & function better. I still find it very hard emotionally & physically though. I get frustrated when I can’t do as much as I used to with my daughter.
Thanks @quinin for the info about the Chris beat cancer website. I haven’t looked at his info specifically although I have looked at other alternative resources. I am very much in favour of language related to healing rather than fighting & those stories do give me hope. I do find all the advice about alternative treatment very overwhelming though & I’m sceptical of approaches that advocate diet alone as a cure or recommend forgoing medical treatment. Has anyone had any success in terms of pursuing alternative approaches? I did consult a nutritionist not long after diagnosis but it was making me feel more guilty that I couldn’t stick to her plan while having chemo. I just felt so ill that some days I could only tolerate a pot noodle or something equally poor nutritionally! I had a pretty healthy lifestyle before all of this & spent a lot of time initially wondering how this could have happened to me. I soon realised that was futile though.
I’m really sorry for everyone going through this.

Oh @SewingBees that maternal guilt. I hope you’ve managed to make it up to her.

@SewingBees, I had something similar with my daughter not long ago. It’s so hard isn’t it?
@MrsPnut, that sounds delicious & a lovely Sunday. Has your taste been affected by the chemo? I often had a strange taste in my mouth that I can’t describe & water & tea made me feel nauseous as they don’t have a strong enough taste.

@Ilovealido Unfortunately Docetaxol has absolutely ruined my tastebuds. Thankfully I have finished all 4 rounds now but knowing my luck, I’ll just get the sense of taste back and then have it knocked out again by radiotherapy.

Sorry to hear that @MrsPnut. Chemo truly sucks. Hope your sense of taste comes back soon & isn’t affected by the radiotherapy

@MrsPnut I have my first docetaxel this week, I do hope I keep my sense of taste! I already have a very poor sense of smell (from long before Covid) and my sense of taste has suffered a little. I find strong tasting foods in small amounts help with feeling nauseous.

My daughter has forgiven me, she's a lovely wee soul and absolutely doesn't hold a grudge.

Thank you @quinin, but unfortunately not, I’m experiencing everything you have mentioned, and my heart is randomly pounding. Have cried for about 5 hours today, and I’m absolutely exhausted. I’m calling the GP tomorrow to ask for something to help me, I feel like the anxiety is making everything so much worse. I already practice mindfulness regularly, and started a new online course just a few weeks ago but I haven’t bran able to practice since my appointment last Tuesday, my mind is racing and I can’t settle to it. My lovely mindfulness teacher has contacted me with a book suggestion, mindfulness - a kindly approach to being with cancer by Trish Bartley, so I have downloaded that on Audible and will start that later.

I feel like such a useless baby for the way I’m (not) handling this but I honestly feel like I can’t cope. I’ve never been so frightened in my life and I just want to run away 😭

Sending love to everyone on this thread x

Totally relate to the being terrified and wanting to run away. I fantasy about just getting on a train and leaving!

@Tean791 it’s utterly awful isn’t it 😭

Hi all. Newly diagnosed with a brain tumour. Live with husband and seven year old son. Operation to remove end of next week and then wait a couple of weeks to find out treatment plan. Still not really sure I'm finding it real. Spending lots of time in bed tired and trying to get comfy. Any advice on things I can do with my son so I can spend time with him but low energy output for me. He doing quite well but has found the switch from mainly mum care to mainly dad care tricky.

MrsPnut
I hope you don't mind if I mention you, as it seems that we have a similar diagnosis.
Surgery was performed at the end of last July, with 3 days warning. I initially presented my symptoms in February 2020...Covid hit.
Daily radiotherapy is on-going. The problem now is that I'm experiencing side effects of something akin to sunburn. Whilst I use Medihoney, I need a cream that moisturises well.
Could a brand be recommended for such a delicate area please?

@Orpheline Are we talking breast cancer or gynae cancer?

I had problems after pelvic radiotherapy and brachytherapy and was using flaminal hydro to good effect after the radiotherapy. It healed the soreness quite quickly but once I had brachytherapy the whole area broke down and I tried so many different things but topical oestrogen was the only thing that actually helped heal the skin. I have medihoney barrier cream and it was good at helping but the oestrogen was needed too.

PM me if you want to, I definitely don't mind.

Thank you MrsPnut

I will pm later

Those of you that have a PICC line, how do you find it?

I had one put in a week ago and I'm still finding it uncomfortable. I'm currently sat waiting to have the dressing changed and a flush.

I sometimes can't stretch my arm and it just feels uncomfortable.

How long until it settles? I just feel like ripping it out sometimes

@BG2015 mine took about two weeks and even then if it was dressed badly then it played up more. I was quite particular about which dressings to use and how to tape it.

I've got my biopsy results back today - my latest lump is fat necrosis from my breast reduction surgery in June. I was panicking that it had come back and it brought back a lot of feelings of panic from when I was first diagnosed in oct 2019. Also got my blood tests back and chemotherapy definitely pushed me through the menopause.

twobignoisyboys waiting for diagnosis is awful. I would definitely recommend asking your gp for anti-anxiety medication and betablockers/valium to take while you're waiting for them to work. I was given sertraline and buspirone and they really helped me to function - before them I was unable to do anything other than cry and panic. It is an awful feeling - please see your gp for help.

Sorry to see so many new names on the group. I found this forum to be such a massive support while I was going through treatment - you really can ask anything, and someone can help. It's also nice to ask other people who are going through/have been through treatment. I was lucky to have good support from friends and family, but they couldn't really understand what I was going through - everyone here does and can help and support you (and there are no questions which are too small to ask!).

Fantastic news @Zorgothslugofdoom, it must be a weight off your mind now.

Excellent news @Zorg

My PICC line hasn't agreed with me and I'm having it removed next week, only had it in just over a week but I've had a few other complications thrown into the mix that saw me pop to the hospital today.

This shit really is the gift that keeps on giving 🙄.

@PaddingtonStareBare

I can't say I'm a fan of it yet. The nurse changed my dressing and said the plaster was very tight and twisted slightly so that was why I've found it uncomfortable.

When I stretch my arm out I can feel it still though. I might give it until my third EC on the 16th and then decide what to do.

My oncologist doesn't like them, it was me that pushed forward it

@BG2015 Mine wasn't either funny enough, but getting the canula in each time was proving to be a minefield.

I so wanted this to work as it was easier for treatment on Monday last week and the doctors did say tonight it could possibly be replaced but I'd have to stay on anticoagulants - after the drama and pain of the last 24 hours, I'm happy to pass on that option!

Anyone that is finding a Picc line hard to get on with have they spoken to you about a portacath? I have a port & my oncologist recommended as lower maintenance. So far I’ve had no issues with it & can shower/ bath as normal. It does require surgery to put it in though so can see that might put some people off.