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.

Hi ladies
I've quickly skim read all 15 pages.
To the ladies worried about surgeries and covid and chemo and covid dont!!! I started my treatment in March with surgery on the first day if lockdown. My results where held up by about a week? And I started chemo the first week in May.
Then for the icing on the cake I tested positive for covid last week with 10 radiotherapies to go. I booked a test as soon as I noticed a taste change and had the results 2 days later. But I also phoned the radiotherapy room where I was being treated as soon as I noticed the change and they where happy to carry on. Ive had to sit in the car wait for them to phone me at the end of the day and let me in a fore exit so I didnt come on contact with anyone but them. Ive escaped pretty easily with covid I have a burning sensation in my nose and a minimal cough that my oncologist says isn't covid but my radiotherapy effects

That photograph is stunning, @Lizdeflores, thanks for sharing it. I do find that I notice the beauty around me so much more than I ever used to- it's been one of the few silver linings of knowing my time is limited.

I have had the most fantastic day: very little pain, and I have managed with just a cane rather than the walking frame or wheelchair. The district nurses called just as I was getting ready to leave for my radiotherapy appointment, and they were blown away by the difference in me, saying how well I looked ("radiant" and "so glamorous" were actually used ). This continued when I arrived at the hospital, with the receptionist seeming genuinely pleased and surprised to see me walking, smiling, and looking awake (I had made the effort to put a bit of make-up on). I had a brief meeting with one of the doctors -who I'd apparently met last week, but was too bleary-eyed to register- and she was thrilled by the difference in me. Same for the radiologists.

I don't know if it's the radiotherapy, something else, or even the placebo effect of knowing I'm having treatment, but I've felt great all day, and PAIN-FREE!

Sorry if this post comes across as insensitive to everyone having a rotten time, but I've done so much moaning that I really wanted to share how positive I've felt today .

Much love and strength to you all

@BitOfFun that's brilliant that you had such a good day! You elegant fowl!

Glad you had such a good day @BitOfFun.

@Starmer I was just reading your advice to @gillmoregirl about high waisted pants it is good advice. You gave me the same advice and after reading it I logged on to Next and ordered some. I wore them in hospital and seemed to have some kind of allergic reaction to them I had an angry red 'Bridget Jones' pant rash. All was not lost though because they prescribed some Piriton so that mixed with Tramadol and Paracetamol I had the best sleep ever!. The pants have been given away.

@FizzyOrange The feeling that this must be someone else's life has never truly left me but I had got easier to live with. I certainly have the feeling that this should be someone else life but that's another story. I was offered psychology and to have that time which is mine alone has been really helpful.

Love to everyone today x

@Lizdeflores Beautiful photos. The colours of autumn are amazing. Thanks for your advice I agree headphones are a must!!

@Bloodybridget Hope you are both doing ok and falling into some kind of routine. Taxis both ways to hospital is a stinker and will really add up.

@Starmer Thank you. I have treated myself to high waisted jogging bottoms to wear during the day and jammies are loose with a couple of nighties for first couple nights where I will have likely have drains catheter in.

@BitOfFun Made me happy to hear you had a good day and I wish you many more liken this. Xx

My admission date changed from 10 am to 7.30 which works better as I've so much prep op to do I would have no sleep tonight would have had bowel prep 5 hrs apart in the morning all before 7 am. At least now can do some tonight and no solids. Hopefully I'll be a morning surgery but not promised. Getting wee bit nervous but keeping busy.

Thank you to everyone for your support and best wishes to you all. I'll update when I can. ❤️❤️❤️❤️

Nice to have some positives on here but to those who are scared or struggling hugs x
I’ve got the green light for last chemo tomorrow.
I have a very strong feeling of being fed up of people doing things to me. Sticking things in me, changing dressings, removing stitches, giving me drugs. My body is feeling a bit violated and wants to be left alone. I’m going to be doing fragmin injections for DVT prevention as well as filgrastim for bone marrow for another two weeks. Pah! I want my body back.
@Fuckmyliferightnow and @gillmoregirl thinking of you both

I used to do a Man With the Golden Arm (Frank Sinatra) mime to amuse my grandsons - blood-thirsty little beasts - complete with imaginary belt pulled tight, holding one end by my teeth. Only in my case it was Woman with the Golden Thigh. 'Eeew!' Fragmin works best when needle is exactly perpendicular, I found.

I know exactly how you feel, @TopOfTheCliff. I had visiting surgical nurses after I was discharged. I was so looking forward to waking up alone, in my own time, in my own bed. When I got a phone call at 8.15 a.m. telling me they'd be coming sometime before mid-day, couldn't tell me when, I nearly lost it, but managed to hold it in so it was my dd who got the full force of my 'I'm mad as hell and not going to take it any more' explosion.

Fantastic that the radio is working, @BitOfFun. Best wishes to @gillmoregirl and @Fuckmyliferightnow. Special thoughts for gg's dd and love to everyone else.

@TopOfTheCliff oh yeah I hear about being poked and pricked constantly. It's hard to stay polite on some days (mainly when I knackered and feeling ratty)

Feeling ratty today 😇

Hi,
I had an MRI on Sunday and am having a heart ultrasound on Thursday. Everything is moving is slowly.
I am taking part in a trial too, it isn't slowing it all down, if anything the trial nurse has been helping to move things along, but hopefully if my cancer partially resolves on the drug they will use I can have a lumpectomy half way through my treatment, if it has totally resolved then I can stop treatment early. But who knows! They will be monitoring me closely.

Just want to get started with my treatment now, I'm feeling more tense as time goes on.

Hope everyone is doing okay, or as okay as can be expected.

Hi all,
Had my follow up yesterday.
I have 2 holes in my brain!! (This will not shock anyone who knows me...)
Neuro doesn't seem concerned so I've decided I'm not either.
He can see nothing that explains my eye issue so he's referring me for a 2nd opinion next week.
So. Good news I guess. More tests though.
Love to all xx

Hi I hope everyone is as okay as can be and good luck for tomorrow @Gillmourgirls. Well I decided to be proactive and chase my blood tests good news is its sorted. Bad news the reason for my neck scan is the original scan showed stuff on Thyroid. So stuff on ovaries, adrenal glands and thyroid I don't think that's a good thing.
I'm lying to my son, for the right reasons but it's still a lie. He also came home telling me his tutor went home with covid symptoms yesterday I can't cancel everything but know I'll have too.

I just want to know now. its just more worry and no answers.

@nixnjj Do you have an actual appt to talk about this with a dr - it must be driving you crazy!

@TopOfTheCliff and @BitOfFun good to hear things are looking up.

@gillmoregirl thinking of you and your op.

@Fuckmyliferightnow I was wondering what was happening - let's hope this trial speeds things a long.

I had my very first chemo on Monday. Was pretty smooth for the first 3 hours - I just worked on my laptop. Then I had a full on allergic reaction to Herceptin. Think John Hurt in Alien. Like a scene from ER but sadly no George Clooney. Fortunately the dr had mentioned this could happen - but rarely - and that it would be very dramatic like a movie but not to panic. So they got that under control and we cracked on with the rest of the drugs. Rather a long day.

But now I'm on the last of the steroids - these are great stuff wish I could take them all the time. Who needs sleep.....?

@aninonyx2 I think I'm under the endocrinologist she did say once the blood test were done she would arrange another scan. That's why the neck scan threw me. I think I might try and get a doctors appointment as I'm not coping and I have a bad habit of trying to block things out

I'm sorry you had such a rough day too. Sorry Im really not normally rude and self centred.

Not at all @nixnjj That would be driving me batshit - left hanging like that. I suppose they just want all the data in before saying anything one way or another - but they could at least explain more about what they are doing.

@Acinonyx2 I'm hoping the blood tests will give a yes or no answer. Batshit is a good word I go from thinking the worst to trying to pretend it's not happening. It's always been just me and my lad as well so can't help feeling as long as I know nothing I don't have to worry him. I'm also getting irrationally irate with friends already. I want to tell someone in real life but all my friends seem to be going through their own stuff and no one has asked me how I am or how my life is just busy offloading on me.

@nixnjj I started telling friends once I had a positive first biopsy. Perhaps you could pick out one or two to talk to? People do of course have their own worries - but you should get your turn. Don't wait to be asked. I said I had something to tell them. Also, it then gets easier as I don't have to start at the beginning of the story. And for the really moaning minneys it gives them some stiff competition

PS I am just never going to get to sleep tonight..... Maybe it will be good to get off these steroids...

I'm planning on crashing on the sofa, finding it hard to get out of bed and get started. I find insomnia worse this time of year as sleeping late means very little daylight.
Did they give you steroids because of the reaction or is it part of your treatment.

I was due to have some steroids for treatment and up to tonight but they also gave me extra for the reaction. I think I might actually go and watch a film . The steroid novelty is wearing thin!

I generally sleep very badly anyway but this is quite different. Hope you get some sleep!

(Lots of loud sweary words and snotty sobbing)
Just had call and my son does need to self isolate. Mechanics so working closely with contact.
I know technically I can carry on as normal as long as he doesn't show symptoms and get a test but ethically I need to let hospital know. The scan is the day his isolation ends but if I wait to cancel they might not be able to give it to someone else..
Also I fall to bits when he's out. How on earth do I hold it together for the next 14 days.

Morning all - gosh there is such a lot going on here!
@Acinonyx2 that must have been really scary having the reaction - can they give you something next time to prevent it? Did you get any sleep last night?
@nixnjj I am so sorry you have all this to cope with, the phase of waiting and uncertainty is going on far too long for you. I agree with Acinonyx that you need to choose a couple of friends to really listen to you and give you some support - I hope you can.
@balkanscot I never responded to your post ages ago when you talked about suffering severe heartburn and constipation with the chemo; both are horrible and I hope you can get through the last one (when?) without too much trouble. M&S food for Christmas will be delicious, I'm sure (ours is coming from Cook!).
@shiningstar2 have you got a date for the hysteroscopy? Sounds v sensible to hold off on little bits of surgery now, if you're likely to need much more.
@Lurkeycakewoman what a nuisance re Covid - but it's great they can continue your rads. Hope you don't get more poorly with the virus.
@Fuckmyliferightnow hope you get results from the ultrasound quickly.
@TopOfTheCliff sorry you can't bear weight on your ankle for another month. DP was told if her ankle doesn't seem to be mending well over the next four weeks, they will have to operate - PLEASE GOD NO we can't manage anything more!! Congrats on completing chemo today (assuming you haven't had a setback!). Thinking of @gillmoregirl having surgery today, hope to hear it has gone very well.
@Shrillharridan holes in your brain??? How weird! Let's hope the second opinion person can work out what's going on with your eyes.
@14yearsandcounting I'm glad you have got an appointment at the breast clinic tomorrow, I think everyone here would agree that waiting is worse than any dg, as we nearly always assume the worst. Hope you are feeling reasonably OK today.

I'm off to Barts at lunchtime for the pre-chemo oncology appointment and consent forms, then another trip there tomorrow for a kidney function test. Every time I have to be out for any length of time, we have to arrange for someone to be here with DP. Thank goodness for her DS and his DP - they're going to take her to the fracture clinic next Monday, too, while I'm having chemo.
Which reminds me @Acinonyx2 how's your DH doing now?

Sending good wishes to all, hope whatever the day brings is manageable!

@nixnjj you may not need to cancel even if you get covid (which is unlikely, realistically). In any case, unless you develop symptoms and need a test - it's business as usual. If my daughter isolates from school (as her friends have already) I won't consider that news worthy. Your son must realise that this is upsetting for you. Dd15 saw me cry for the first time in her life at bedtime after chemo. But they do need to come with us and not be completely on the outside. She will see me getting sicker - we must talk about it. He might need that too (even as a bloke).

@Bloodybridget You are so good at keeping track! I will get extra premeds next time. I can't just not take Herceptin - that's just not an option - I'm stage 3 - it's my Big Gun and the reaction is probably due to multiple tumours (seen on MRI) triggering a big cytokine response. So I like to think it's a good sign! Sort of.

Dh has recovered and has a new CT on Friday so hopefully we can get that saga moving along and get his ops out of the way. Thank goodness your DP's son can help out. These things do have a curious way of piling up - just when you think you've hit your limit.

To everyone waiting on tests and scans - may the force be with you. To those with procedures and drugs - hope things go as well as they can in the circumstances.

Actually I've been thinking about that phrase everyone uses; Hope you are well - hope this finds you well etc. I don't intend to ever use something so presumptive again - it reminds me of my mother who always wanted reassurance that everything was fine. I'm pondering variations.

@nixnjj I'm hoping you get some answers soon. I am in the same limbo land at the moment, waiting for the biopsy results and it is so hard. I feel I am going mad with the worry of it all. I also feel irritated with some friends and these are ones I have told. The overriding response tends to be from the Positivity Police still 'it might be a cyst, keep positive' or 'no point worrying until you know' and I just want to be taken seriously.

@Acinonyx2 how frightening for you to have that reaction, poor you. I suppose for the staff it is all in a days work but not for you if it is happening to you. How awful. You're right about the phrase 'hope you are well' and I plan to consider an alternative to this soon.

@gillmoregirl thinking of you today xxx

Hello. I've been catching up and there's so much news. Sending lots of love to everyone who is having a crap time of it.

I am still waiting for my CT. There appears to be a big backlog and although my breast nurse is chasing it's just not getting sorted. This week I found a lump on my collar bone which of course has sent me spiralling into a panic, imagining that the cancer has spread everywhere. Nurse says it is probably just a coincidence but I guess she's hardly going to tell me anything else down the phone! It's ridiculous as I know chemo is horrendous but I just want to get it started now. I feel like I am in limbo and the waiting is horrible. Definitely having a low day today.