Cancer support thread #76 - newbies welcome!

[Bloodybridget]

Here's the next thread for anyone at any stage of cancer, from noticing a possibly warning sign, through tests and scans, diagnosis, treatment and beyond. Come on in for advice, sympathy and support.
The last thread is here.

If you've been on a previous thread, please come and say hello and introduce yourself!

If you are a relative or friend of someone with cancer and looking for support, please look for other threads; there is one in Life-limiting illness for partners - link to latest. This one is for cancer patients ourselves.

@AlbertCampion your hair at the moment sounds amazing! I think you are that daring! I wish I'd done similar now!
I did try a wig on that was similar to my normal hair but it wasn't quite the same, which was somehow more jarring if that makes sense? The blonde option would be very high maintenance if it was my actual hair, which I'd never have the patience for, so I figure this is my one chance at it! Once my hair started thinning significantly I got a buzz cut and although it's a bit radical for me to keep it permanently, I do like the feel of it and it's incredibly practical!

@Acinonyx2 I'm sure you're right. Just now this is the longest gap I've had between treatments since early Sept and tea suddenly tastes normal again, it's so good to enjoy a cuppa. I hadn't even realised how much I'd missed it. And suddenly I'm much more cheerful. Crazy drugs.

@AlbertCampion I’ve decided I’m going to have a pink wig. I want something I’d never normally have and also my own hair is very straight and very fine.
I got up from my ultrasound and biopsy looking like I’d been rolling around in a hedge, my hair tangles so easily.

I’ve also got some silk mix fabric being dropped off on Monday so I can make myself some turbans.

Just quickly popping in to send sympathy to @topofthecliff, I do hope your ankle infection clears up soon, and to @lubbaloo for the infections and hospital stay. Good luck with Paclitaxel.

Enjoy your purple hair for as long as you can, @AlbertCampion!

We are struggling on here. I'm ridiculously tired, dry mouth, chapped lips, breathless, no appetite but am eating anyway, small amounts. Fed up and rather wobbly. I just wish either DP. or I was in good shape. Waaaah!

Waaaah indeed! I do sympathise- all these things add up and make you just feel shite. The chapped cracked lips and dry mouth in particular really annoy me- it hurts to open your mouth to eat anything bigger than a slice of bread, and you can't even talk properly with your lips being seemingly stuck to your lips .Try to remember that this isn't forever- it's not much reassurance, I know .

Hi all

I went to post an update yesterday and somehow lost it.

Saw a consultant on Friday after 3 hours hanging around. It was not mine as there was a cock up with the appointment. I've calmed down, so not ranting anymore - so the extra day has saved you all 😁.

Anyway the upshot is that I am released from weekly bloods and I won't need to go to hospital until my 100-day PET scan just before Christmas. Bloods are improving all the time. They've reduced my meds to mainly just anti-vitals. Oh and it turns out I did have a chest infection last week so got some belated antibiotics. My anxieties are also completely normal - now I just need to manage them.

Today I managed a 2 mile walk and built my desk (hoping to start working again part time in Jan)

Things that are still nagging me - my mouth (sometimes feels like there's glass in my cheeks/tongue) and the peripheral neuropathy in my feet. Last night whilst I had no really feeling the pressure of my duvet on my feet was excruciating.

On the hair chat - I noticed today I have leg hairs have started growing again. Still no head hair though. I have replaced my cotton beanies with a fine selection of woolly bobble hats. 🥶

Wow, Otter, well done on the 2 hour walk, that's brilliant!

Congrats on the walk @InOtterNews, good going.

@Bloodybridget I hope you get some respite soon, it must be really tough.

@InOtterNews a two-hour walk is soooo impressive! And the health news sounds good, but the sensation in your mouth, and the painful neuropathy, must be really hard. I remember when the hair on my legs came back last year, I was quite disappointed as hoped it had gone for good!

@BitOfFun how are you getting on?

I'm doing really well, apart from the walking and the tiredness. At the moment I feel very contented: I've got a gorgeously cute spaniel gazing at me and wagging his tail, and there aren't many better feelings than that! even if he probably just wants food.

Still struggling
No appetite
Not sleeping
Every ache and pain I'm convinced is something bad.
I might phone the dr tomorrow and see what they suggest.
Its anxiety I know but its horrible

@Shrillharridan it sounds as though the anxiety is causing you more problems than any underlying nasties. Have you looked to see if your local area offers support for anxiety? Most places have a self referral NHS service offering CBT or counselling. I tried to get through to my GP surgery today and gave up when I was 8th in line and holding for twenty minutes. I did an econsult in the end. I think I need another week of antibiotics for the ankle wound.
I’m fed up about my festering foot but my favourite author who I sent a fan letter to has sent me the kindle version of her latest book before publication. She is so lovely and had cancer herself 10 years ago. I’ve made a lovely friend! It’s so cool she is interested in my ideas in the plot of the murder mystery.
Also DH has just brought me coffee and a cookie dough chocolate brownie which is an obscenely naughty treat. I feel very lucky.
Wishing you all spaniel adoration or fresh air walks or just gluttony like me!
Top

@Shrillharridan You know you are suffering from anxiety (understandably but still needs controlling) so definitely just call your dr and get help.

@BitOfFun Ahh the spaniel. I have an adoring cat that medicates me (I have 2 cats - but only one is adoring...).

@TopOfTheCliff I would be totally sunk with your foot injury on top of everything else -you are doing amazingly (the mere mention of pus make me feel faint - I'm a bit of baby with all this medical stuff).

This is my official 'week 3 well week' and I'm making the most of it, out walking every day.

I hadn't really considered a wig but you guys have got me thinking about trying something really different.

@BitOfFun Spaniel love sounds awesome. I've got two fat snoring pugs who like to lie on me at every opportunity.

@Shrillharridan it is really difficult waiting, and feeling so powerless. love to you and definitely look for some talking therapy if you can.

@TopOfTheCliff boo about having to hang in a queue for the GP and yay for your author gift.

@Acinonyx2 Glad this is well week, and you've had the weather to get out.

I had to bail out of my MRI scan this morning after about 30 minutes, I was feeling so claustrophobic and my head felt like it was going to explode. I have a PET scan on Wednesday and I'm hoping it will not be as bad.
Breast cancer is confirmed as grade 2 stage 3 invasive duct carcinoma which has spread to my lymph nodes.

Vaginal cancer was still not discussed at MDT because they didn't have the MRI or PET results. I kicked off a bit at the useless nurse because I haven't had anything really from them at all, my GP gave me my biopsy results and all they did at the appointment where the gynae told me it was cancer was sent me off to try and arrange a CT scan. The breast oncologist today was horrified at my treatment and just kept apologising. The breast clinic have been fantastic, and even had copies of reports for me to take to my oncology appointment on Wednesday.

@MrsPnut How infuriating all round! Crikey - I would be getting pretty pissed off with the total lack of joined dots here. I have a similar breast diagnosis: grade 3/stage 3/ multiple nodes. Do you have your receptor status (HR/Her)? We can play snap... I did find the MRI scan quite difficult - I ran a kind of movie-of-my-life in my head through the whole thing as distraction. Not looking forward to another one.

And you remind me @TopOfTheCliff great to hear about your friendly author - that would certainly cheer me up too.

@Acinonyx2 not had those parts back yet, but breast biopsies only taken last Tuesday so they took far less time than the first set. Once those results are back then they will be sent on to my oncologist.

The breast team oncologist was really pleased that I was going private and able to have the same oncologist for both.

@Shrillharridan hope you can get some help from your GP. I take beta blockers for anxiety and they do take the edge off. The waiting is just awful.

@TopOfTheCliff what lovely news about the book from your author. How frustrating about the GP appointment though - holding for twenty minutes is much too long. Did you get a message back from your econsult?

@BitOfFun your spaniel sounds adorable!

@Acinonyx2 pleased to hear you're feeling good and can make the most of it.

@MrsPnut sorry about the MRI, I am also not good in confined spaces so am dreading when I have to have one of these. It is frustrating about the MDT meeting - I am in the same boat waiting for results and it is exhausting. I find the fact that I have to chase up everything just relentless and sapping but it seems to be par for the course sadly.

@InOtterNews two miles is a long way! Your health news sounds encouraging but sorry to hear about your mouth and feet. Before all of this, I had never imagined that the symptoms of any cancer could be so far reaching. Hope that improves soon.

@Bloodybridget how is the nausea? Hope it is still at bay and you can eat a little.

I still haven't had a call from the consultant about my biopsy even though it was promised for Friday so will have to chase that again tomorrow which will be three weeks since I had it done

I had to give in today and get an appointment for my raging piles. I have had them bubbling away for a few weeks and have been treating them myself with sudocrem and ice but over the weekend they have become so sore and painful it was making me feel sick. The only appointment available was a nurse practitioner who phoned me and asked if 'someone could take a look to see if they are red and sore'. I told her I live alone (I could have looked with a mirror) but really wanted someone to look at them properly as I have often been fobbed off in the past. She gave me an appointment and said they are inflamed and infected so I have some antibiotics and steroid cream. She also did my flu jab so it was well worth the visit.

Love to everyone xxx

@FizzyOrange you have all my sympathy re piles, glad you have got medication now and I hope they improve very soon. Pretty crap you're still having to chase for the biopsy results. It's such poor service!
@Topofthecliff how lovely re the author. I can easily wait 20 minutes to get through to my GP practice too. Does your foot hurt? I do think seeing you're having chemo, they should be following up with you and making sure the wound is healing.
@Shrillharridan I'm echoing pps to say please do get some help with the anxiety, whether it's chemical or talking. Things are hard enough for you atm without struggling on with that.
@bitoffun I'm loving the idea of you soaking up the sun of your dog's adoring gaze!
@Acinonyx2 good for you, enjoying walks and feeling well! I'm hoping to reach that stage soon, maybe later this week.
@MrsPnut was the dg something like you expected? You sound calm about it, but hard to tell online. Sounds like you have a good breast oncologist, and I do hope the other lot get moving very soon. The PET-CT scan is nothing like an MRI so I hope you can get through it easily.

I am much better today, not really nauseous and have eaten quite a lot. Also I've probably done as much in one day as in the previous six! DP and I are being competitively competent which is a bit wearisome! I actually walked to a post box (maybe 200 yards altogether), my first time out of the house since Tuesday, and got over-excited looking at Sylvanian Christmas nonsense I will get the little DGCs.

Hope everyone has a peaceful night.

@Bloodybridget I’m glad you are feeling a little brighter today.

I’m ok with the news today, I was devastated at the first diagnosis in the colposcopy room when I had got dressed and realised I’d bled on the back of my top and has been a bit scared by the nurse having to go out and get the consultant. The speculum was also very painful and she was a bit brusque.
When the CT scan came back with a shadow in my breast, it was a surprise and the breast clinic got me in the next day.
They told me at the end of that appointment that is was likely to be cancer and today was confirming the type, grade and stage.

I’m sure I shall have some very dark times ahead but at the moment I don’t feel particularly unwell.

@MrsPnut it might make you smile if I say when you first posted on this thread, I said your username to myself as MrsPuhnut, but I realised a couple of days ago that it's probably MrsPeanut ???

It is indeed Mrs Pnut, which came about because when my husband signs his name, it looks like Mr Pnut.

Peanut

And it did make me smile.

Thank you all x
I am reading and taking on your advice.
I'm phoning the drs tomorrow to speak to someone about something for the anxiety.
My mind is going 500 miles an hour 😒

Evening all. I hope you don’t mind me posting. Although I haven’t had a cancer dx I’m due to have a double mastectomy on 11 Dec to reduce cancer risk (BRCA2).

I’m planning to go flat - partly because I’ve had enough of surgery this year (ovaries and gallbladder removed) - I’m 49 and have a high BMI (35). I know everyone’s recovery is different, but can anyone give me any idea about what to expect, and any tips? Thank you x

Hi all,

Wow, there is a lot going on here at the moment! I need to log on more often, but I always say that and then in chemo weeks the lethargy takes over... And you know the rest :)

@Lubballoo I'm on Paclitaxel at the moment, although it's dose dense, every two weeks. I've only had one cycle, but side effects were quite manageable. Bone pain mainly, but co-codamol worked on the worst days. Much easier than EC in any case. Fingers crossed it treats you kindly too!

@MrsPnut I have grade 2, stage 3 BC. I hope you get your hormone and HER2 status soon, and that you can get a treatment plan rapidly then. Happy to chat at any time if I can help you make sense of the jargon or similar.

@bloodybridget, I'm so glad the sickness is more manageable now! And I love the sound of your GP neighbour. Handy!