Cancer Support Thread 95 - No googling allowed 😊

[LemonDrizzle10]

New thread - we need to stick together!

@somewhereonthe517 thank you - you make me feel less alone too! I feel like I just come on this thread and throw around all my anxiety, which cannot be helpful, but it's such a worrying time.

@TopOfTheCliff I wish it was known before your treatment too and you could have avoided the full clearance entirely!
I was told at ultrasound that I had 'large' lymph nodes, but not 'enlarged' lymph nodes (like they are just naturally big). I think everyone thought they were clear. If only they had been!

But still, I'm a lot calmer now. We went into the meeting with the idea that it could be good news or bad news, or maybe no news if the test results were not back. We had not thought of the possibility of middle-ish news - not the best but not the worst - and it's hard to get your head around.

A wonderful friend emailed me today. I had updated her on the lymph node situation, and her response gave me the strongest feeling that she was going to be by my side, walking the journey all the way with me. It made me cry, and then made me feel a bit better. Still shit, but better.

@breastcancerpanic it really is shit but a plan helps. I’ve nothing to add to the wise guidance of others but science continually evolves and gives us more hope.

It looks like next week is the crunch one for me - gynae biopsy, ultrasound and then breast consultant appointments to look forward to - on 3 consecutive days so that's the best part of 3 days work lost but losing work is the least of my worries at the minute.

@breastcancerpanic I veer between wanting to nothing and know everything, I think my BCN must think I'm a bit odd, but they've been very good at going through things after the appointments. My DH works away and whilst he's willing and happy to come with me, I have this feeling of not wanting to call in help until it's desperately needed, likewise I have lots of friends offering but for some reason I need to do some of this on my own.

I just want to get going with treatment, whichever it is that they decide is best, but being in limbo is so difficult. I understand the reasons and they make complete sense but it's like standing on the edge of a precipice waiting for a push - you know it's coming but not when.

Ah @frostyfingers i feel you! Work is as you say the least of the worries at the moment but needs doing, logistics around winding down as well as the income factor. My work is part of my identity too. I’m now turning away more work/income than I care to think about as a self-employed person as I’m not currently able to do my job. I’ve set a load of practicalities in place to deal with this and i should be able to work in future but am concerned that the impact of treatment and chemo brain might will my sparkle.

I hope you get a clear pathway and as good news as possible.

I get my mastectomy histology results today so am definitely worrying about what fresh hell is going to be unleashed.

on a practical note, I read somewhere a recommendation for chemo head coverings but cannot locate it. I’m looking for a turban and also for a sleep cap. Any ideas on where to buy these or if I would need something different?

@dancingwhilstfacingthemusic
Deresina sleep caps from Amazon worked for me, used them under other things during the day as well

Osyvo turbans from Amazon for day wear, I had multiple ones, to coordinate with what I was wearing, and to wash frequently

I liked Anna Bandana but also beanies and bobble hats from Millets. Those are still useful now I have hair again.

Thanks for those. I’m worried ahead of clinic today as I get the results of the breast tissue from my mastectomy. If there is more cancer in it that was thought, obviously it’s good that it’s out but does that give me a greater risk of general recurrence in the future? How do I know it’s not already started growing in the other breast? Of course, chemo should help with all that but arrrgh!!

@dancingwhilstfacingthemusic Eadiechops (check her out on Instagram!) was my go-to place for headwear. https://eadiechops.com/

@breastcancerpanic Re: lymph nodes, I had both a clearance and radiotherapy as I had 5/13 involved nodes. No maaaaajor side effects now, 4 years down the line, apart from very mild lymphoedema. As in, the arm is a tad fatter than the other if you look very closely, but it hasn't progressed at all in all this time.
On the hormone therapy, you'll most likely be offered Zoladex (a monthly injection - but it's not a liquid, it's a little pellet that gradually dissolves) to shut down the ovaries, and an aromatase inhibitor like Exemestane to limit estrogen production. I was on this combo for 3.5 years. The aromatase inhibitor side effects got too much then, and I am now on Zoladex + Tamoxifen, and will stay on this for another 6 -ish years. No big side effects on this.
This is obviously all shit - but you'll get through it, one step at a time.

@dancingwhilstfacingthemusic all the best for your meeting today. It's so so hard to get these bits of information come in and need to process each one. Hopefully it will be good news for you today, but if not then we are all here to support you.

@dancingwhilstfacingthemusic
Hope your appointment goes as well as these things can, and you gain some clarity. The what-iffing is more or less inevitable, and it’s difficult not to sprint down a warren load of rabbit holes.

One thing I took away from the whole shenanigans is that the MDT try really hard to tailor the treatment to the individual, but there are so many variables. Add in rapid developments in oncology across the board, layer up with an overloaded NHS and it’s no wonder that we, the patients, become anxious and at times overwhelmed. It’s all shit, we have to wait to find out just how shit, and which bit is ours.

it seems that once a treatment plan is finally decided, and then begun, a strange calm may descend. Chemotherapy and/or radiotherapy just to grind through without wondering too much about which new thing you’ll land with from, to borrow a phrase from up thread, the tombola of doom.

Positive thoughts from me

Hoping your appointment goes well @dancingwhilstfacingthemusic

I bought a slightly overpriced beanie/scarf combination from somewhere I now can't remember the name of. And a sleep beanie from Amazon, which was much more reasonable. I've just ordered some more head covering thingies from Amazon.

Today, me and my wig took ourselves out for a walk, and then stopped off in a new local cafe for a quick sandwich. Oh, the excitement of being OUT. And with PEOPLE 😂 (I live on my own).

Blood tests tomorrow, third chemo on Friday 😞

Third chemo today. I feel ick. Home and on bed. I’ve just taken some more anti sick meds. And am hoping I can manage some dinner.

felt very anxious going in today. Wasn’t sure why them remembered I’m on my period. So that might do it.

@ememem84 Poor you, hope the meds kick in soon and you feel well enough to eat.

Hope the meds do the trick @ememem84 it’s bad enough being on chemo without the added joy of periods.

huge well done for getting out, @BatshitCrazyWoman that’ll be me soon and I’ll be helped on my way by the bravery of other people.

At last some good news. As you know I had two lumpectomies without clear margins and opted for a mastectomy. The histology shows that there was no further cancer present but given the location of the tumour, which was close to the lateral margin of the breast tissue, a mastectomy was the safest option. A lot went in one ear and out the other, so I’ll wait on the formal letter, but no more operations and the tough choice of mastectomy rather than a third and final try at shaving the area of concern was the right choice.

I meet my oncologist on Monday to find out the treatment plan.

keep on going, you wonderful people.

@dancingwhilstfacingthemusic that is such good news! You made the right call, and that sounds like the best possible outcome. Sounds like something to celebrate?

I had quite a good day too. No new news, but a long meeting with a breast cancer nurse ahead of my upcoming mastectomy. She was brilliant and spent over an hour going through everything. She convinced me that they are fully expecting to 'cure' me (though she doesn't use that exact word). From the way she talked I feel like it is more just about getting through the treatment... and she was a fan of 'convalescing' (which I think basically means naps?! I need to look this word up!) and putting in place nice things to look forward to.

It's so nice to hear some encouraging news @dancingwhilstfacingthemusic & @breastcancerpanic - it gives me hope.

My gynae appointment for a biopsy has been put back 3 days which ordinarily wouldn't bother me but currently has really wound me up, if one more person says "it's only 3 days, that's good" I'll scream - it's not good, I just want answers & action and then I can get on and process what's happening with the breast cancer. I do feel like I've got an arrow above my head with a big sign saying "dump it all on her, she can cope" - & I really can't. I've got to the point of not wanting to go to bed as I don't get more than a couple of hours of unbroken sleep and start each day worn out. I do have zopiclone but don't want to become reliant on them.

Sorry to be so gloomy (again) - on the plus side the sun is shining!

@frostyfingers

Gloom is allowed. It’s so frustrating. If you haven’t been through the cancer wait maybe it’s impossible to understand that it is NOT ONLY three days. Its’s an extended period of existential anxiety when you are already stretched pretty thin.

You will get through it, but it’s challenging and there aren’t any ‘onlys’. And, yes to the she can cope. Have you been told ‘You’re so strong’ or ‘I know you’ll be all right!’ yet?

I listened to an awful lot of books in the wee small hours of waiting. They had to be ones I knew, with nothing too grim, The Secret Garden worked well. Might that help? One unexpected consequence of that was I’m not enjoy audio books at all post treatment. Maybe I’ll get back to it ….

We must grab on to the little pocketfuls of happiness when we can. There was a glass of wine last night.

@breastcancerpanic glad you had a good session with your bc nurse. It helps loads. It’s good to have the support of people who’ve been through it and are just starting. No one else quite gets it and it can be hard on close loved ones too.

@frostyfingers that is just hellish. I hope there are no further delays.

Oh @frostyfingers , each of those 3 days feels like a decade, I know. I echo @GrannyGoggles audio (or actual) books for the wee small hours. I've read so much lately.

@breastcancerpanic I'm glad you had time to speak to the BCN about everything - I hope it helped.

Excellent news @dancingwhilstfacingthemusic

My bloods were okay today, so chemo number 3 tomorrow.

Slept awfully last night. Had my immune boost injection yesterday and I think that plus the meds have whacked my sleep out.

if I hear one more “stay strong” I’ll cry. I’m doing my best. But stop reminding me that I’m sick.

Hope there a way at least to get some rest today,@ememem84 Not sure if it was On this thread but someone said “if you can’t sleep, rest”. I remind myself of that in the night, although it’s hard to do with a racing heart and feeling ill.

Currently curled up on couch with a decaf coffee the crown a blanket and nurse catface watchung over me.

Sleep deprivation is vile, there's a reason they use it as a method of torture. I can only do audio books at the moment, I just can't concentrate on reading or watching anything as my thoughts keep slipping off into horrible places but with an audio book having to listen keeps me on track.

Yes, to "staying strong" and "you'll be alright" as two very annoying phrases - I know people mean well and confess that probably I would have used them prior to my experience. "I'm bloody trying" and "I might be but I'm not alright now" are my responses, mostly in my head though as I haven't quite got the nerve to say them out loud.

I love nurse catface, I hope they are good at their job!

@ememem84 Nurse catface is gorgeous.
Hope the rest helps.