Cancer support thread # 75 - come on in!

[Bloodybridget]

This is the new 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, there are other threads on this topic - this one is for cancer patients ourselves.

@Thymeout I was talking about this with my nurse. I've already been on codeine for a while. So morphine was next step for me. Apparently it's to do with how fast your body's metabolism works - if it you have a fast metabolism your more likely to experience the weird side effects

At 6ft and 90kg (thanks cancer) it just makes me sleepy so no fast metabolism for me.

@InOtterNews

Thanks for that info. Don't know about my metabolism, tho' have never really had a weight problem, but I do know I have a hyper-sensitive vagus nerve and parasympathetic nervous system. In everyday-speak, I'm a fainter. Not just for the usual reasons, but any attempt to dilate my cervix, e.g. for an IUD, and my blood pressure drops like a stone and I'm gone. As a Victorian lady in a corset, I'd have been swooning all over the place.

Must read up more on alternatives to morphine.

Hello to everyone. I feel very behind, but hope everyone is coping ok with treatment / results / waiting.

I've had a lovely week away, had a kind of "farewell tour" of friends (many socially distanced catch-ups in the garden with lots of cake and wine!) and start my chemo and shielding this Wednesday. In a wierd way I wish it started tomorrow.....

@Thymeout - I don't like morphine either. The hospital gave me nefopam post-op (also an opiod) but I didn't find it effective, but pain nurses said most people get on well with it. Some people get on better with tramadol than morphine as works on different receptors (am a doctor in my "other life", but pharmacology knowledge rather rusty!), but equally lots of people find that it makes them feel very spaced out or drowsy. IV paracetamol and chocolate for me!

Hello people I think this is where I should be hanging out at present. I have a Lockdown Lump that turned out to be Breast cancer and as it is HER2 positive I have straightaway started Chemo before surgery. Overnight I had to stop work and start shielding and am still in shock. I still have to have all the scans to see if it has spread beyond my Lymph nodes and am scared but getting a bit bored of the terror now. I was pretty poorly for 3 days then felt better but had a midnight trip to A and E to rule out sepsis on day 6. Getting used to life in the slow lane and a new set of priorities.

Tell me how you fill your days?

@Zorgothslugofdoom thanks for the hospital tips, the extension lead is a very good point.

@TopOfTheCliff sorry you are here but welcome to the gang! I am HER2+ and was diagnosed in October, I had two huge tumours and the cancer had spread to my lymph nodes, but very fortunately all seems to be gone now following chemo and antibody treatment, so I’m just waiting on surgery and radiotherapy which have been a bit delayed due to the virus. Fingers crossed you have a similarly good outcome.

Things to do? At the start of treatment I made myself a massive to do list of all the great things I could get done around the house while off work. I look back at that list now and laugh at how much I overestimated what I’d be able to do. But that’s fine, none of it matters.

I find it helpful to have a selection of lots of little bitty things to do each day, particularly because I’ve had a bad time with insomnia the last few months and my attention span and short term memory now make a goldfish look good. If you can get plenty of sleep, that will really help over the course of your treatment. If it’s difficult, do ask for sleeping pills, I really wish I’d done that sooner.

Things I keep busy with: online newspapers, especially the puzzle section; reading books, although if I’m very tired I let an audiobook do the work; jigsaw puzzles; knitting; embroidery kits; sewing face masks for friends and family; zoom calls with friends and family; working on my family tree (I use ancestry); very slowly learning a new language on Duolingo; games on my phone; looking after the plants on our balcony; exercise bike; planning walks for when I’m allowed to leave the flat again, planning holidays for next year...

I’m sure others on the thread will have more ideas!

Hi all. I've been reading along and thinking of you all. Posted a few days ago about being referred on the 2ww for suspected skin cancer. My dermatology appointment is tomorrow so I'm feeling restless this evening and trying to keep my mind from spiralling. Not doing very well!

@greenOlives Thinking of you. Hope all is ok today.

@Starmer

Glad I'm not the only one, re morphine. IV paracetamol sounds good.

Good luck with chemo tomorrow. Fingers crossed you'll be as lucky with side-effects as I was.

@green0lives - I hope today goes ok. Waiting is hard.

Thanks @Thymeout. I think you had capecitabine too? I made the mistake of reading lots of posts about side effects last night (why?? Should know better!) and so woke up feeling gloomy, but more positive now.

I like your list @Piggles39. I am learning Dutch - also slowly - on Duolingo, and really enjoying it. What are you learning?

@TopOfTheCliff filing your days is hard, I've turned in to a demon bread maker luckily the family can't get enough bread! I also enjoy gardening, during shielding I surprised my self by discovering I could draw, I'm not brilliant but it makes me happy so I will keep on going. I also find colouring fills an idle moment stops me thinking and keeps me off social media which doesn't always help me,!.
My hair started to fall out today😪 otherwise my side effects have been pretty much ok they improved a lot after day 5 .I managed to convince myself that I would beat the hairloss,Cancer really is the gift that keeps on giving. X

@TopOfTheCliff welcome. Sorry you're here.

I can't really offer suggestions of things to do as I've been so unproductive. I'm a reader in normal times - at least 2 or 3 books a week. Since March I've read 4
books. I don't have the attention span for anything really focused (even films I struggle with). Instead I've turned in a potter. As in I potter about. On days when when I'm well I'll do a little gardening and cook a meal (I find doing either therapeutic).

Today (the morning after returning from a week in hospital) I have showered, dressed and sorted out medical appointment letters. This is probably it for the day though. As a minimum I try to get dressed every day and read the paper.

Learn to listen to your body - do as much or as little as you like.

@Starmer I’m doing French (it’s scary how much I’ve forgotten from doing it at GCSE, although that was nearly thirty years ago, eek) and Italian, hopefully I can apply my new knowledge on holidays in the future! I do like how Duolingo breaks everything down into tiny chunks and repeats and repeats it, it’s just what I need right now.

@Lizdeflores That’s a shame about your hair. When that started happening to mine I snapped and had it all shaved off as watching it fall out in chunks was just too depressing. Mine then started growing back about a month after I finished chemo, and now after three months it’s nice and thick again, although strangely a lot darker than before.

Thanks for the suggestions people. I have some projects lined up now. Today I am chucking out all the dead flowers from last week as it seems a bit like a funeral home round here! Lovely thought and all that but purple chrysanthemums? Really?
I got my PICC line cleaned and met the lovely HCA who will do it weekly for me. It’s about learning the ropes as a new patient at the moment.
Like Starmer I am (or was) a doctor until this month! Now I have to behave myself and stop making jokes which is my default mode when scared.
I just organised a grocery delivery with lots of nice Healthy stuff. I really don’t want to put weight on while lounging about at home. And my Cancer Hair Loss charity freebie package arrived. I am so looking forward to the comedy eyebrows I can try out! Hair still attached currently though.
What about the NHS wig? Yes or no? I probably won’t bother if I have to shield at home anyway

@Topofthecliff The NHS wigs I've seen of others look good I decided that it would be a bit a faff for me,but we're all different. People say they can be quite hot . There's a scene in Sex in the City when Samantha has to give a speech and she flings her wig into the crowd because she is so hot and uncomfortable .(I realise life is not always like Sex in the City,I'm still waiting for a millionaire to save me in Paris!)

Hello everyone. I could just do with a handhold at the moment. I'm ging into hospital next Monday, 3rd August for a mastectomy after discovering a lump about 5 weeks ago. NHS Wales have been great, but I still feel there are so many "what if's". I've got two adult children, a boy and a girl. I'm 76 with several other health problems and have been shielding since March. I got to planning my funeral this morning! Feeling very vulnerable.
The doctors have told me that the cancer does not seem to have spread to the lymph nodes, but I suppose they won't be sure of that until they operate. It seems to me to have been growing quickly lately - originally it seemed an oval shape, but now it is round and I am concious of it all the time. Could someone tell me when you get to know about what kind it is? Best wishes to all who need to be on this thread. Even just reading other people's posts helps a bit.

Hello @Stillamum3, that’s been very quick, you must still be in shock.

If they haven’t yet told you what type it is, that probably does mean they want to test it post surgery to be sure. Did they put you in touch with a breast cancer nurse you could phone to ask more questions?

I am no expert but I have heard that with breast cancer, the older you are at diagnosis the less likely it is to be one of the nastier, fast moving types. I know when my grandma was diagnosed at around your age she only had surgery and radiotherapy (no chemo) and then lived well into her nineties with no recurrence.

It is only natural to worry but there are lots of us here in the same boat to offer a handhold!

Thank you Piggles yes they told me it was likely to be treatable with surgery and radiotherapy - hope they are right. I can't wait to get rid of it, so I'm glad I haven't had to wait too long, but I still feel very anxious. Yes, I have a nurse I can contact if I have more questions, she rang me today with a time for a Covid test on Thursday. I realise with my other health problems my level of risk for the operation is probably higher than most, but must look on the bright side, I suppose.

Good morning all, I am new to this thread and have a question if you don’t mind.

Back story: I went to the GP in May as the nipple on my left breast had started bleeding and my boob felt very full, 43 and not pregnant but it felt like it did when I was breastfeeding. She was lovely and referred me to breast clinic but didn’t initially have any concerns. I went to clinic at start of July and had a mammogram & ultrasound and examination. Consultant discharged me and said all ok, bleeding had stopped by this point. 4 days later I got a letter asking to go back to clinic as my mammogram had shown up an area that needed further investigation. A few days later I had another letter with an appointment to go for a vacuum assisted biopsy.

At my second mammogram I was told by person doing mammogram that I have calcification,I just nodded. She kept asking if I had any questions but I was a bit on shock so had none.

My biopsy is tomorrow. Is there anything I need to know in advance, is there anything I should be asking? Will I be ok to wear my underwired bra afterwards?

Hello all, checking in for a catch up.
It's always sad to see new people on the thread, but welcome to @TopOfTheCliff and @Stillamum3 , glad you have found us anyway, hoping for the best for both of you. Top it must be a real shock when suspicion turns into diagnosis so fast, mine was much more of a slow burn so at least I had time to get used to the idea! I had no idea the cancer hair care service included eyebrows, do they offer a Groucho Marx and a Denis Healey? Re occupations while having treatment, jigsaw puzzles and Lego worked well for me, plus lots of dozing . . Stillamum quite understand you feeling very vulnerable, and of course this is a rubbish time to be going into hospital etc. Hope you don't have to be in too long, and that staff take very good care of you. Are your DCs nearby?
@Piggles39 nice to see you here again, tho' I'm sorry you too are suffering a lot with Dire Rear. Being in hospital without visitors will be hard, but hopefully it will be only the two nights. Wishing you a lovely quiet ward with nice, reasonable fellow patients!
@ElaineMarieBenes that's v good news that there's no further spread. Hopefully the BRCA test will be negative. Have you got the appointment re further treatment sorted yet?
@Thymeout I haven't ever had a bad reaction to morphine, thankfully, how beastly for you. And that's quite a long wait for your next scope and scans - have you got any good distractions coming up?
@Starmer all good wishes for starting chemo today. Is it a long process? - mine for ovarian ca took hours but I know some are much faster. How was your holiday? Why Dutch, is it hard? I've never tried a language where I have no idea of pronunciation! I worked my way through Duolingo Latin a while ago (did O-level in 1970), but it only goes up to a v elementary stage.
@green0lives did you have your dermatology appointment yesterday, how did it go?
@Lizdeflores it's easier being bald in summer, anyway! I like the sound of your pastimes, your lucky family getting nice home-made bread!
@InOtterNews glad to hear you are out of hospital, you're probably feeling very feeble but I bet it's good to be home. Wishing you a peaceful time in the run-up to the transplant.
Lots of warm thoughts and good wishes to everyone else here.
I have a scan tomorrow, having wobbles on and off, ridiculously googling for info on recurrence and survival rates for my type of tumour, which is totally stupid as I know I won't find anything meaningful. DP and I have a plan to try living outside London, if I'm OK this time, so lots of things feel uncertain. I really hope we can do it.

@TreeWitch I started writing my mammoth post ages ago so missed yours - hello and welcome, and I'm sure you'll get lots of helpful info from the many breast ca experts here.

Hello @treewitch, welcome! Sorry you are having to go through this, the uncertainty of the testing / waiting time is the absolute worst.

With biopsies they should give you plenty of local anaesthetic first so you won’t feel anything at the time, but they can be a bit sore afterwards so it’s good to have some painkillers at the ready. I did find the soreness afterwards varied depending which part of my breast they were dealing with and how deep they were going (I had multiple tumours and have had 5-6 of the biopsies over the last few months).

It definitely helped to wear a supportive bra to go home in, as basically you want to minimise movement/bounce in that area while it heals. I think they generally recommend wearing a sports bra for that reason. Also if you are going home by car it might be worth taking a small cushion to put between you and the seatbelt, if the belt would pass across the affected side.

Make sure they tell you when you can expect the results of the biopsy and how you’ll be getting them - will they phone you, write to you, or what?

There’s some helpful information here on calcification and on the vacuum biopsy process: breastcancernow.org/information-support/have-i-got-breast-cancer/benign-breast-conditions/breast-calcifications

Fingers crossed you get the results back quickly and all is benign.

Thank you for your good wishes BloodyBridget. My DC's are some way away, unfortunately, although they have both visited in the garden since I had my diagnosis. I needed to tell them! Feeling a bit more positive today ( sorry for the whinging yesterday) so am baking bread and trying to catch up with the washing this morning. Hi, @TreeWitch I hope your biopsy is not too painful for you. I found that I only needed a couple of paracetamol for one night, but if you have a non-wired bra, that might be more comfortable to wear afterwards.

@Bloodybridget - thank you and yes I am concentrating on the good news. Not seen the oncologist yet - but I’m only 2 weeks post op and trying to enjoy the break from hospital appointments (still a bit sore but also started working from home - though only 3 days this week!).

I really hope your scan goes well and brings you good news too. We are also looking at where we might live when (hopefully) we make it home next year!

Hello hello, I'm new here and I haven't read much of the thread (yet).

I had a colonoscopy today and they found a 7cm tumour. I'm still feeling a bit like I'm dreaming but on the other hand I'm not in the least surprised. I'd had symptoms for a long time and my colonoscopy was cancelled due to coronavirus. So at least we can get things started now.

It's still early doors but I know I'll be having a scan sometime next week and surgery sometime soon. Big sigh... need to have patience and practice my zen mindset I guess!

@LucyWarlowsRightHand. Sorry to hear your news. I haven't been given official diagnosis yet. All talk of early stage etc. Can't be determined until surgery which I'm waiting for. I know others here have more knowledge and experience so hopefully they'll be good support to you. Where is your tumour located. My leech has set up camp in my rectum. Hope you get appts quickly so you know exactly your plan of action.

@Bloodybridget. Sending you the very best of positive thoughts for tomorrow and May it bring good news.