Cancer Support Thread 97: support for those diagnosed and going through treatment

[LiliJilliBobs]

Cancer support thread 97: support for those newly diagnosed and /or undergoing treatment…..
Thread 96 is pretty full - here’s a new one

@cannaecookrisotto I totally understand the worry and every little niggle assuming the worse, especially at this stage with so much unknown.
When I had my main tumour (on my tonsil) removed they needed to wait a few weeks after before doing a PET CT scan, because as soon as something is poked, prodded or chopped the body responds and it can look like lymph nodes are enlarged or responding to something nasty, which in reality it is just a normal reaction to the poking.
What's important is you are under the care of the doctors now and part of this big scary, but amazing cancer care scheme.

Those are all sensible questions. The mammogram and ultrasound are for the placing of the markers in the tumour. They are tiny seeds that show up on future xrays. If there are lymph nodes affected it does mean the cancer has started to spread so your treatment will be tailored accordingly. My first BC had spread to the axillary nodes so I had a full node clearance with my lumpectomy. Nowadays they try to avoid that with more intense radiotherapy I think.
The good news is that if chemotherapy does it’s job then at surgery all they find is the marker and no sign of cancer. This is called a complete pathological response and is a great outcome. I think about one in three get this. Don’t be afraid of the scans. Knowledge is power!

Thanks all, the doctor did say that they’re aiming for the chemo to completely wipe it out and that it will shape what any surgery would look like post-chemo.

I’m kind of bracing for the worst news because of the size of the bastard thing (unless some of it does turn out to milk cyst as well as tumour) and anything else is a bonus. Prepare for the worst but hope for the best. And even if I do get told stage 4, I’ll still give it a good bloody go!

In my head I was thinking “well why can’t you just remove both breasts to stop reoccurrence” but I’ve since learned that reoccurrence may not even start in my breasts.

What I’m finding out with some research is that it often gets missed at first opportunities in younger women because it looks like it’s related to breastfeeding mastitis etc. I first went to the GP about it in May and was sent home with Naproxen and told to try hot compresses. I don’t feel angry towards the GP or anything, even the breast surgeons and 2 radiographers who did the ultrasounds weren’t concerned either. The GP who didn’t refer in May called me when my surgery received my notes just to say how surprised she was when she saw the information come through from the hospital and that she’s really sorry that’s the outcome I’ve had. She said she will call me weekly to check in and if there’s anything I need to just give her a shout. I feel like going forward the GP will take a much more cautious approach with younger women presenting with lumps and for me that’s enough. I don’t want to raise the roof (where’s my Mums really upset about it) because it’s not going to change my situation, but I do think she will have personally learned from this and it could make a difference to someone else in future.

Once I’m out the other end I’m going to channel
some energy into raising awareness to younger women, especially breastfeeding women who might think “it’s only a cyst or mastitis”. When we hear of BC we think of women over a certain age, but TNBC looks to be an insidious little fucker that occurs in much younger women. 2 of my similar age friends have already booked private mammograms and then I found out my own mother skipped her mammogram last year!!!! 🤦🏼‍♀️

How are you lot feeling anyway? I’ve prattled on about myself that much I’m going to shut up now with my brain farts and stop flapping until I get these results.

Hows things on your end of the keyboard?

Morning. I'm trying to stay off the Internet too. But I feel quite unwell so I'm doom scrolling. Headache gone, but still fatigue and loss of appetite. Now got glands up in my neck.

Rainy day doesn't help distraction opportunities. Might take the kids out to a flea market. They are probably happy about the sudden additional time on computer games! They know nothing so far.

How are you lot feeling anyway? - Tired - then usually I'll be very tired from Monday to Thursday lunchtime - loss of appetite and taste - then my energy will return prior to my next Chemo session the following week.

How are you lot feeling anyway?
Also part of the tired gang!
Today is the first day I've been out in a couple of weeks beside hospital appointments. I feel like between the original op to remove the tumor, the fertility treatment and feeding tube I'm always uncomfortable and restless.
So I went to try some stressless chairs because something in my brain was saying 'this will fix you and be comfy when you can't sleep'
I went to sit in one fully hoping my brain was wrong - except I almost cried in the shop it was so comfortable, and I don't have the £££ to buy until either I get the critical illness insurance payout OR confirmation of when my salary illness insurance will kick in. I'm terrified one won't happen or be delayed and popping this luxury chair on a credit card would be stupid.
God I hope the GP signs the bloody insurance forms this week so I know where I stand, especially as they have one cancelled order I could have immediately, all others are a 7 week wait
All anger and tiredness and crappy mood is fully directed at my GP who insists on 28 days to fill in forms, it's not for a bloody holiday it's so I can go off sick and not worry about how to pay the bills. What's even the point of insurances when you can't rely on them in a timely manner
Arghhhhhhhh

@FcukBreastCancer <hugs> and nooooo to the doom scrolling. That AI stuff on the top of Google is an absolute wanker. My glands are up but both my little germy creatures have colds constantly so I spend most of the time with hamster glands. I never really get minor illnesses. Can’t remember ever having a cough, cold, flu, bugs. But I’ve had meningitis twice, once being meningococcal septicaemia that nearly finished me off, I’ve had Toxic Shock Syndrome too. I don’t appear to do these things by halves 🫠.

Appetite up and down here too, have you thought about some nutritional shakes to keep your energy up and get some nutrition in you for when you don’t feel like eating? I’ve got some of the Aymes Actagain 2.4 shakes but double check with your team to make sure they’re suitable for you. I’ve lost a ton of weight (10kg) so I’m trying to make sure I’ve got enough meat on my bones and healthy to withstand the chemo. I chug one of the shakes when I don’t feel like eating breakfast or lunch so I know I’m at least getting some calories and nutrition.

The strawberry burst flavour is quite nice! Recommend keeping in the fridge though, much better cold.

Flea market sounds fun! It’s thundering here so it’s extra cosy on the couch with blanket. 5 month old napping and I’m watching trash on the tv. My eldest girl will be 9 in Feb next year so not far behind yours. She knows I’ve been going to hospital for doctors to look at my boob so I’m thinking to go along the lines of “you know how I’ve been having my boob looked at? Well I need to have some medicine that’s going to make me look and feel quite poorly” and take it from there. If she asks me questions I’ll answer in age appropriate way but as honest as I can. I’ve spoken to school too and they’ve got pastoral at the ready so I’d defo recommend that.

@DanFmDorkingwhat day is your chemo day? Will you get some days of feeling perkier in between at least? I know it sounds awful but I’m bloody chomping at the bit to start chemo. Never did I ever thought I would be saying that!!

@cannaecookrisotto I have two stone to shed so I'm getting a good head start with it. I am trying to eat nutritious food when I do eat. Aware of keeping my energy levels up.
Had poached egg and smoked salmon on granary toast for breakfast.
Yesterday not so healthy and consumed wine which probably was unwise!

@ForestFlowerFairy ... I went to try some stressless chairs because ...
I agree with you entirely - I've bought two very comfortable reclining chairs from a British Heart Foundation furniture shop - they clean them before leaving the shop and will deliver for a few extra quid - good hunting 🙂

@cannaecookrisotto what day is your chemo day?..
It's a two week cycle - Thursday, Chemo day, pump fitted, start feelin' tired - Sat, Chemo Pump removed - Monday lunchtime to Thursday lunchtime, the great 'steam train of tiredness' hits me, I'm semi comatose (no change there say my family!) - late Thursday onwards, start getting my energy back - Monday, bloods, almost back to normal energy, - Tuesday, meet Oncologist to discuss bloods - Wednesday, either at the Gym for 2 hrs followed by a 10k run (sarcasm) or go to MacDonalds - Thursday, Chemo day - and repeat.

At my last meeting with the Oncologist it was stressed that even when I'm semi comatose I must keep eating, even snacks, biscuits or chocolate because my body need the calories to gain strength for the Chemo - my quick mind jumped into action, "Can I have a prescription for biscuits and chocolate then?" - I got a grade 3 consultant stare.

@ForestFlowerFairy we cross posted this morning with my essay and I missed your post I’m so sorry!

How much are the chairs? If you get stuck give me a shout, DM me if needed, I don’t mind donating to your comfy chair fund/bills if it makes things easier for you! Give the GP a gentle nudge and don’t be worried about playing the cancer card. You’re not a nuisance for asking them to hurry up considering the circumstances ❤️. Can your GP prescribe you anything for the discomfort and restlessness? Mine offered up some Diazepam on a plate, they’re only 2mg but I find they take the edge off when I start getting doom antsy.

@FcukBreastCancer poached egg and salmon sounds glorious! I too had a lager shandy yesterday, I don’t even drink normally but thought bollocks, I fancy a cold shandy.

My mother on the other hand has turned into Gillian Mckeith and is telling me I can’t have sugar in my coffee, turns up with batches of mother approved food stuffs and counts the empty nutrition shake bottles in my recycling near enough 😂. I think it’s her way of helping but I do really appreciate it. I’ve always hated cooking and she knows I’d be sat on Deliveroo morning noon and night otherwise eating all kinds of greasy badness for efficiency sake.

@DanFmDorkinghow old are you if you don’t mind me asking? It’s good to hear you get a bit of a week back of more energy before the next cycle, and I’d be joining you at McDonald’s!! I’m terrible, I don’t smoke or drink much but I’m a massive couch potato as it is, my favourite hobby is sat on my arse. But good old Gillian Mckeith (mother) has fitted me with an Apple Watch and expects 10,000 steps a day from me. A woman can only dream. Even before all this I probably did about 300, I work from home, I walk from desk to couch to kitchen to desk to couch then to bed. With the odd excursion to the nappy cupboard to replenish the stock on the changing station (that is between desk and couch) haha.

As for the snacks, I love Jaffa cakes so I might stock up on those for some emergency calorie building, just can’t tell GM!

@cannaecookrisotto that is an incredible offer but one I will need to politely turn down.
The chair is a crazy luxury but I will look at second hand ones as @DanFmDorking suggested.
I did chase the GP, receptionist refused to chase until it had been 28 days.
So the Macmillan nurse called and they refused to speak to her as she wasn't listed as having permission to discuss my medical records.
I went in and asked what they were playing at and what I need to do to give the Macmillan nurses free reign to speak on my behalf. The original proposal was I needed first and last names, dates of birth and personal addresses for EVERY potential Macmillan nurse. I may have got grumpy and they agreed I could simply state all Macmillan nurses linked to my hospital

Apparently my GP does want to see me but the earliest they can fit me in is the 22nd September, considering my original tumor was removed 8th July...I explained I start treatment on the 17th and the receptionist seemed annoyed I wouldn't move my daily radiotherapy 🤣 we've settled for a telephone consultation but she won't give me and time, so I told her she needs to make a note that I won't guarantee availability that day as it's a smidge hard taking a call during treatment. Honestly, the look of her face was as though I'm the MOST awkward person in the world.
I'm not a big fan of my GPs, can you tell?!

Pls can someone line to the recovery thread ? I’ve looked and searched but can’t se it . Thank you

@lisalisa https://www.mumsnet.com/talk/general_health/5270506-the-great-recovery-part-4?utm_campaign=thread&utm_medium=app_share

@ForestFlowerFairyno problem at all, if you change your mind just let me know ❤️.

Your GP receptionists sound like a right unhelpful lot of Tossers!!! I get that there’s process but bloody Nora. A little help can go a long way in making it a bit easier when we’re already stressed to the eyeballs. I can’t complain about mine so far but there’s still time, I’m only a week in. I hope yours pull their fingers out.

On a happier note on my side, I’ve managed to get in with a great eyebrow microblading woman tomorrow. She responded to my query saying she’s going through it herself and she’ll get me in, and will give me a discount. So at least I’ll have a cracking set of eyebrows to go through chemo with. Every cloud and all! I’ll take any win as a win at the moment 😂.

@cannaecookrisotto ... how old are you if you don’t mind me asking?..
I'm at the older end of the spectrum.

Thank you
It went ok
I did have a mid op complication and spent the night in ITU, but fortunately have no recollection of most of this. I am home and despite this all went well and otherwise as planned. Pain is improving every day, I’ve managed a mile walk today, extremely slowly. Bowels mostly functioning normally, they expect them to be back to almost normal soon, and now I am hoping that the histology reports of everything they removed is ok.

I am covered in bruises, exhausted, windy, and relieved to be at home, and that the complication wasn’t worse. I read the consultants’ op reports, copied for my GP, today, and don’t quite know how to process it. They will send me for allergy testing, and have done a huge amount of additional tests, all of which seem relatively normal, given everything.

FFS your GP sounds rubbish

do you have a Social Presciber at your surgery?
When I was finally told about her as my DF who I cared for was dying, she was utterly amazing and filled in so many forms for him. She came for a home visit and sat and helped with everything until I was done, and was the first person at the surgery who actually asked and listened to how I was.

@OhNoItsAdeno sorry to hear of your complications and ITU stay but glad that you’re now home recuperating and the pain is easing every day. A mile walk is fab!

Went to Breast Clinic today and saw consultant as been having some pains in the offending tit. Consultant offered up CT results, said no spread, no metastasis.

I feel like I’ve won the lottery. Absolutely went from sheer horror dread when he told me he had CT results to sheer relief/elation when he said no spread. Could have kissed him/humped his leg.

I was fearing the worst but I feel today like there’s hope. He said they will discuss at MDT but he has it in front of him, no spread. The relief is immense.

Absolutely fabulous news, I am so incredibly pleased for you @cannaecookrisotto

@OhNoItsAdeno that's a fantastic idea. Your post spurred me on to call and ask, but before I did I asked for an update on the form, the receptionist advised the form is finally on the desk of a doctor. When I explained what it was and why it's urgent her whole attitude changed and she promised to speak to the doctor herself to speed it up. Where the heck was she a week ago?! Or the week before...!!

So pleased you had good news @cannaecookrisotto . Hope you are holding up ok.

Mine was a mix of good news and uncertain.
Now I need ultrasound and possibly biopsy on other side.
Plus a CT to check for spread. Annoying that MRI didnt cover everywhere.

Results for HER2 unclear So gone off for genetic testing.

I do have confirmation of hormone positive. So that was my good news. But if her2 is positive I will need chemo.

Thanks @ForestFlowerFairy. My lump is massive, 7.5cm, so I couldn’t consolidate such a big lump with anything other than it travelling here there and everywhere

I’m glad your surgery has pulled their finger out but how frustrating!! I’m finding even the smallest acts of helpfulness makes a massive difference at the minute whereas OTOH obstruction and wankers feel 10x more obstructive and wankerish.