Cancer Support Thread 95 - No googling allowed 😊

[LemonDrizzle10]

New thread - we need to stick together!

@GrannyGoggles exactly.

today I am ok. Tired. But that’s due to a bad sleep. But I’m ok.

the one thing I am doing next week is going through the admin and finances and making sure we have everything we need. Because that’s something that’s worried me a bit.

I thought I had critical illness cover through work. I don’t. That would have paid out a chunky lump sum which would have helped enormously. But I have medical insurance which is an absolute godsend (axa) and long term illness through work. So that’s also amazing.

DH and I need to make sure our lasting powers of attorney are up to date and cover medical stuff (I think they do but that’s an easy check - email lawyers and find out) and make sure that all accounts we have are dual name. Again just in case.

I’m three days post chemo so going into the shitty (.literally phase) and I’m feeling very sorry for myself. I’m spending money shopping too much and I can’t be bothered to
go to the gp or work to get my critical illness forms signed. I just don’t want to see work people.

Ive decided not to go up north for Xmas the second year running. My family don’t specifically come down to see me and my mother avoids me like the plague. They are coming down for panto and fortnum and masons afternoon tea in December so that can be my Xmas, I honestly don’t mind staying in with my cats. One will be due to be spayed I can’t risk her escaping!

are you sick of people asking if you are eating? I mean it’s just a daft question what do they want you to say?

Hugs @EachandEveryone I’m rotting in bed with a nauseous stress headache ahead of surgery. I like me but my resilience is a bit thin right now. Hopefully I’m getting the dip before bouncing back and feeling mentally stronger for tomorrow.

this too will pass.

Lots of hugs to you all.
I have a question if that is okay. I'm looking at the predict tool: https://breast.predict.cam/
When I put my knowns in and guess various unknowns, I don't feel that hopeful. But they say: "A newer version of the tool, launched Spring 2024, uses an updated algorithm based on more recent data which shows people survive longer, and also factors in harms from treatment and offers more personalisation. Click here to try this new version."
When I do the new version, things look so much brighter. Is this new version really the one we should be using? I can't see why not, but I just want to check...
My other big worry is that I have perhaps 4 tumours (2 biopsied, 2 others that showed up on the MRI but we won't even to bother to biopsy as a mastectomy is needed), so it is "multi-centric" I think. That fact doesn't go into predict but I feel that it surely makes a difference... if the cancer can jump from there to there, then can't it jump into the lymph nodes...?

Panic try to step away from Predict. You sound as though you’re scaring yourself witless, entirely understandably.

It seems to me that Predict is quite a blunt instrument. The oncologist I saw walked me through it at my first appointment. I was a bit shocked by the experience. I was kind of ok with knowing my odds, but I know not all patients are. He was at pains to point out that it’s old data, treatments have developed and improved. Also, there’s no allowance for factors such as weight, level of fitness, co-morbities etc.

My understanding is that it’s arguably more useful for clinicians coming up with treatment plans than the patient. It did however inform some of my decisions regarding treatment

I know it’s achingly, painfully difficult but you have to wait till your team have the full pathology post surgery and try not to second guess at this stage. I think it’s almost instructive for some of us to yearn for answers, clarity, understanding but there aren’t any at this point. And it’s v v hard when there are non forthcoming NOW.

@GrannyGoggles Thank you. (And also I love your username!)
I am indeed scaring myself witless. I just have a feeling of doom about it all - I don't know why.
I am going to try to focus on other things, but it is so hard. I just feel like crying.
Sorry - I don't think I am a very helpful person on this thread - even my username is unhelpful! No idea how you are all coping so well.

@breastcancerpanic. You are in a safe place here.
Where you are now us truely horrible. When I presented at the breast clinic my lump became 2 pieces with one 'occult' ie not visible on a mamogram but seen on ultrasound. I panicked at this and asked for a CT scan as I thought it could be everywhere if its already generated amother bit. Unfortunately my CT scan then threw out what they described 'incidentals' which they then needed to check before they would do anything with my boob. Honestly it was horrendous. I kept asking my BC nurses why they weren't doing anything like book me in for surgery whilst they got to the bottom of all these other suspicions. I needed suspicions in my bones, lungs and womb all checking. Some 'days' I didn't sleep in 48 hours and ended up on sleeping tablets and low level anti depressants. It seemed like the longest and worst time of my life. All of the suspicions slowly got checked and ticked off as benign but only after alot of further tests. In all I had 4 weeks of all these tests and then finally ..booked in for mastecomy and full lymph node clearance. I am now back on a more standard pathway.. at the beginning of chemo and will have the whole truck load of hormone,radio, bone drugs going forward. I am not relaxed about all this and some days I still feel very sad but I do feel there is a way forward and..more importantly... I feel so much better than where you are now. I was very hung up on there being more than one piece in my boob but actually more is often found once the full pathology is done. It doesn't feel like it now but I was you in June. Be kind to yourself it is utter utter sh&t and I don't know anyone that would handle it any differently to how you feel now. Thinking of you and sending you lots of hugs x

@somewhereonthe517 Thank you so much for your reply. You can't know how helpful it is to read!

I lied. I’m actually quite down about my hair. I do think the new shorter cut suits me. But I’m pissed off j had to do it. And it’s still shedding. And I loved my hair.

I know it’s temporary. And only hair. But still 😢😭

@breastcancerpanic. You are very welcome. I echo what grannygoggles says re predict. I couldn't believe such a thing existed and before I had my results was on it endlessly changing node and tumour sizes etc. Did it do me any good. Absolutely not but I couldn't help myself. Some amazing long timers on here held my hand and you will get there too. In the end I really wish someone had taken my phone off me..like a naughty teenager. Googling at 3 in the morning was not my friend but hey I still did it. I tried sleep pod casts and got grumpy when they ran out and I was still wide awake!!. I did it all. You are not alone. Keep venting on here ... and try to distract yourself with telly or something other than Google..from someone who knows!!!

I know exactly how you feel. I keep thinking the shedding has to slow down but I think I’m going to lose all my hair before it does. I’ve gone from a “slight bald patch if you know what to look for” to bald on top of my head and 3/4s of hair gone completely since Monday.

I am trying not think on how long it will take to grow back.

I'm struggling with so many things at the moment. Waiting for my hair to fall out. The fact that as soon as I sit down I fall asleep. I've not seen another human being since Sunday 😔 Feeling very low, which makes everything else even worse.

I am still hopeful it will just thin. But. Who knows.

dh doesn’t get it. But why would he. This time last year I wouldn’t have understood it.

ive Got a friend coming round today for a bit. The idea was that I’d have had treatment and she was going to “babysit” me while DH was at work 🤣 but now we’re going for a walk and a coffee instead.

Panic I think your user name is entirely appropriate.

It maybe worth asking if there is psychological support available via your unit. Unresolved early trauma resurfaced, swirled in with diagnosis and attendant uncertainty & I came v close to a complete breakdown down during the period you’re going through. BCN referred me and I really benefited from seeing a psychologist for several months.

It Is entirely possible that those you think are coping well are actually feeling pretty messy. Several BCNs have also said the patients they really worry about are the ones who apparently breeze through.

As my very wise, then 8 year old granddaughter said ‘Granny, sometimes you have to be brave and scared at the same time.’

@ememem84 I get the hair loss. I’m old, didn’t think I was especially vain, never traded on my looks, but my, how I minded. For lots and lots of reasons.

Enjoy the coffee and walk. Hope you may some nice, dark gallows humour with your friend to lighten the mood a little

Oh I will! Thank you.

your Granddaughter is very wise.

we say to our kids that being brave is being scared but facing it and doing it anyway.

Hi everyone, I'm hoping that you lovely people can help me come to terms with the whirlwind that has just hit me in the last few weeks.

I was admitted to hospital via A&E for a diverticulitis flare up towards the end of August and part of the process is a CT scan. The scan showed up the diverticulitis obviously and also a lump in my left breast. The consultant in charge of my care mentioned it almost casually after discussing my stomach "I assume you know about the lump in your breast, I've referred you urgently to the breast care team".

I've had my initial appointment, biopsies and mammogram and been told that it looks like triple negative breast cancer, the lump is 1.5x2cm's, the cells are grade 3. I have an MRI in 10 days, a second oncology appoinment shortly after and then chemo is provisionally booked for 3 days after that. 6 sessions over 18 weeks, then surgery, then radiotherapy. I was given a 12-18 month time scale for the whole process.

I know you've all been there and will understand the feeling of being completely overwhelmed by it all - I've done some practical stuff, spoken to work (self employed so no work = no money), told most people and have a lot of support.

But deep down I'm screaming and don't know what to do with myself.

@frostyfingers just wanted to send you a big hug. I know what you mean about not knowing what to do with yourself.
For me it has been a few weeks, and I'm just beginning to realise that the process is actually really traumatic. The health care team are doing a great job, but it's just the shock of it. It's going to take a long time to mentally absorb it.

Sounds like you are doing great to be able to have done the practical stuff and also to be talking to people about it. One of my friends really helped me by letting me know that it was okay - actually good - to tell people. Be as kind to yourself as you can!

@frostyfingers it is almost worse when you are right at the beginning, with months of treatment ahead of you. It still feels really surreal, I had a lot of plans for the next couple of years, and now I only have chemo, surgery, radiotherapy ... my life feels like it's effectively split into Before and After diagnosis. I'm telling people gradually, as I'm finding other people's reactions quite difficult.

Welcome @frostyfingers to the shit club that no one wants to be in. I’ve been here since early august and the support has been phenomenal.

agree with @BatshitCrazyWoman it is worse at the beginning. No routine. So much information. Too much information. It’s all scary and overwhelming. Once you have a rough schedule you’ll be ok.

wishing you the bestest of luck with your treatment xx

Well my lovely team of compatriots in the face of crapness. I’ll read back to catch up but just wanted to say to anyone facing surgery I’ve just done my third and am in the final recovery room. This was a mastectomy with reconstruction and I’ve come round pain free and well looked after. If you have to do this, it Will be ok.

One of the best pieces of advice I read was that my job is just to turn up. I was a bit teary this morning so went with the advice to do that and they looked after me.

@ememem84 I've just chopped my hair short too - well, I let the kids at it with clippers. I'm surprised by how upset I feel about it all falling out. I have had short hair before and didn't bother to cold cap and didn't expect to miss it but I was surprisingly affected by how it felt when it started coming out. Sending you strength and solidarity!

I've now had Paclitaxel #4 (out of 12) and am a third of the way through chemo. I am definitely starting to feel more tired generally. Still functioning at work and able to cycle to pick up the girls from school etc though so pretty happy with how things are going.

It was a bit of a low point emotionally when my hair started coming out in clumps, though 😭

@frostyfingers I'm so sorry. Those early days are so shocking and awful. For me it got better once treatment started and I felt something was happening. Also, I think it just takes a bit of time to emotionally process it all. Be patient with yourself and kind to yourself.

Your kindness is much appreciated, I’m sure once I get the first treatment under my belt it will be less scary, but this fear of the unknown is all consuming.

I’m still struggling with the after effects of 5 weeks of antibiotics (oral thrush, lovely) and not sleeping at all well, although I just picked up a prescription for Zopiclone today. I’m not a fan of them but I can’t function on 3 hours sleep right now and need to have at least one night a week when I can get a proper rest.

I looked at the info I was given for wigs today - and put it away again, I can’t cope with that idea at all yet.

It will be 6 weeks from the initial CT scan that showed the lump to the first chemo, 6 weeks in which my life has turned upside down. As my youngest child used to say “my brain is full”.

@dancingwhilstfacingthemusic I hope your recovery goes well, and you're getting some rest.

Hi all, first time poster. Diagnosed mucinous cancer in right breast in April after routine mammogram. Had oncoplastic surgery to remove tumour (they got it all - yay! and no spread to lymph nodes, double yay!), and breast reduction on left so they match, all good healed fine eventually, and can cope with how they look Scars etc don't bother me. BUT I am now going through adjuvant chemo, and after 2nd cycle (of 8) my hair has started to fall out, and I am devastated. Thought I was prepared, have the wig and hats ready to go, but have been in tears since 5am this morning, this has got to me so much more than the diagnosis tests surgery etc. My partner is hugely supportive and is just sympathetic enough without letting me wallow, but have turfed him out to go to football as he needs a break from me for a couple of hours, but I can't stop crying. I feel so pathetic it's only hair but this is really getting to me. Any advice how to deal with these bloody awful feelings? TIA and hugs to all going through this shit disease x