Cancer Support Thread 84 - gently crunching our way into autumn

[mowly77]

New thread as old one about to be full. As those who have been around far longer than me have said: Welcome. Pull up a chair, help yourself to a biscuit, a large gin, or a detox tea. Or all three. This is a supportive thread for anyone with cancer to discuss how things are going, ask for advice etc., vent, scream, or discuss life in general.

Please feel free to join for support if you are going through tests as well, hopefully they will come back all clear, but if not we are here to hold your hand through the journey.

I have surgery tomorrow, it will be 10 weeks since my mammogram, which I know is pretty quick, women have been waiting 8/9 weeks from diagnosis to surgery at my trust recently, but it's felt like months.

I've got a follow up appointment on 4th November for the lymph node biopsy results, that's going to feel like forever, especially as the lady in medical physics this afternoon told me they'd get the results in a few days.

I think because it’s been a week today since I saw the gp the referral would have been in last week but apparently they only received it yesterday and they’re not dealing with it until tomorrow and then at least 2 weeks from then so could be longer.

I understand about waiting for the appointment but say it was for the 20th I could say we’ll come the evening of the 20th I’ll know what it is and what I’m doing going forward. At the minute There just doesn’t seem to be anything but maybe that’s just my anxious brain

I understand, there's no answer that will help, from an outside perspective I think a week for a referral to be written, received a review scheduled is pretty fast. If they're reviewing tomorrow you should get an appointment letter very soon.

Welcome to all the new waiters. The waiting is definitely rubbish and for me, hasn’t got any better even though I’ve been very fortunate that things have moved quickly for me. I’ve been on a conveyer belt of stress since April, bloods then the scan then the further scans, surgery and then chemo. I just want it all over with and to get some peace but I can’t see how life will return to normal. Especially given my CA125 remains stubbornly above 400 despite 2 clear scans. I hope chemo is causing that are prior to that it had dropped down to 311.

Anyway, it’s nigh on impossible to do but try and maintain a zen “it’ll be what it’ll be” attitude while you wait. You’re on the path now. Hopefully the path to this being a distant memory, but if not then the path to treatment and recovery. I say that but never managed it myself and just tied myself up in knots of worry 😂

I think this is the thing isnt it! Logical brain knows how should really react but emotional brain just doesn’t comply!

To add my complaint for the day, I don't yet know whether I'm doing chemo tomorrow, postponed from last week because of my white blood cells (or lack of them). Bloods yesterday and I was told I'd get a call today, nothing yet and no one's answering the phone. It's unsettling. Plus I have to sort out lifts from my friends who also work, and I've been given start times of 8.30 - 11 for previous cycles. I've got some work to do but it's difficult to focus with half my brain on this.

Oh no @SierraSapphire - another kind of awful waiting. I do hope you manage to get though to
someone.

Its so hard to work when your mind understandably is preoccupied elsewhere. Random aside but my DS has SEN - mainly ADHD - and I think when worrying distracted like this gives me an insight into his too busy brain.

This is exactly It. I know in all likelihood that it’s nothing and the logical side of me says this could be so many other things and the gp is not concerned. But then my emotional side kicks in and I think omg and then I’m just waiting and the longer I wait the more the emotional side takes over the logical side

Well arses!
Went for my smear test, all was grand until nurse said so all your breast cancer treatment finished and I burst into tears! Then she, lovely woman,obviously felt bad and tried to make me feel better etc. She was not to know my mantra these days is do not be nice to me! I can cope with everything but that🤣. Anyway only six weeks wait for results… can’t access my med records online for some reason, despite the year of treatments for some reason my NHS number doesn’t exist.🤷‍♀️

@SierraSapphire I hope you got your call. It sucks when the system fails on such routine things.
@Podgedodge don’t hold back, it’s good to get the emotion out, especially on a random nice nurse who can cope.
@Ridingladybugs and @Fluffyunicorn1 welcome and sorry you find yourselves here. I hope your stays are very short. We understand the horror of waiting and waiting and waiting….

Today was a Good Day. I took MIL89 her shopping, she has been promoted to using just one stick and my trainer friend came round and started a course of confidence boosting exercises with her that I have arranged for a month. Then off I went for EC4 chemo and all went relatively well. They were rushed off their feet and accidentally gave me extra chlorphenamine I didn’t need, but my room was chat central and I heard all the news on family illnesses, work stresses and health problems from the nurses. It distracted me from the Red Devil and the time passed quickly. Now I can celebrate the Halfway Point and look forward to counting down to The Finish. I shall pinch some of DH’s secret chocolate stash to celebrate 😂
Sending cheerful steroid fuelled waves to you all.
Top xx

Glad your chemo went well @TopOfTheCliff - it feels like it's moving quite quickly for you. I finally got through to the chemo suite after about an hour and they said I'm booked in for 8.30 tomorrow, so I guess my white blood cells have perked up. Three out of four times my drugs haven't been there so far, but he assured me they should be fine for tomorrow. I'm looking forward to it being over is about all I can say!

That’s great news @SierraSapphire Let’s hope the luck holds. My neutrophils were 3 this week which is the best in ages so all the bone pain from the filgrastim was worth it as the little white cells came online. I am on a dose dense regime which is two weekly to give me and the cancer less recovery time between doses. It’s harsh but effective apparently and will get it all over by Christmas. I hope you get a chance to celebrate the last chemotherapy tomorrow, even if it’s just a small party 🎉

I'm at chemo, drugs have arrived, so maybe on time today though they have warned me they're short staffed. They also said it's my last treatment though it's 4 of 4-6 so that may be a bit premature! I look like I've dressed from a jumble sale to keep myself warm from the cold cap and ice slippers and I have a scarf over the top of my head to hold down the cap. Everyone else in here looks normal!

I'm sure you look beautiful Sierra - hope the day is not too tough for you.

That's very kind ajandjjmum but I fear I look like a bag lady, albeit one clothed in Sweaty Betty and Boden. I've downloaded some house magazines and I'm working my way through those.

A very upmarket bag lady @SierraSapphire 😂😂

When will they tell you if this is your last? Do you get a say? Would you stop here or do the 2 more?

I'll have a meeting with the oncologist before the next treatment. I think the original idea was as many as I could tolerate but I think he was concerned because of my low neutrophils last time. I'm going to try and rest more this cycle! I can say no or he may decide it's too risky to do more bearing in mind it's probably a fairly low percentage benefit. All going to time so far, I'm already on the carboplatin so hoping to be out by 3.

Results day for me tomorrow, not sure how I’m feeling.

Fingers cross for you Gilead - hope the results are as good as they can be.

@SierraSapphire @Fantasea big hugs to you both (and one for me too 😂) having cancer and being sole carer for an elderly parent is the pits. It’s not just the physical care but, as you know all the admin involved as well. Mum lost her credit card and I have spent a lot of time trying to access her online banking using her new card. Numerous phone calls left on hold and visiting ATMs trying to active card. I just wanted to cry.
Plus this week she unplugged her phone line and care call line as “ her tv wasn’t working “. I also get phone calls mid evening, when I’m trying to relax because she can’t remember how to use her tv control to access Netflix. I love her to bits but I wish I had someone to help me out. I try not to feel annoyed at my sister who lives 30 minutes away but sees mum once every six weeks. Anyway, I just wanted to say I understand what you’re going through.

Thanks @Mycatispretty - I had a very difficult conversation with my DM yesterday because she wants me to take her to the doctors in the next few days but I've just had chemo today, but she's got a short-term memory problem so I think she keeps forgetting I'm having treatment, I said that I would take her if I could, or otherwise I could make an appointment for the week after. I do agree that I need to go with her because nobody else seems to have the full picture of everything including herself and it would help to sort things out more effectively, but I have to prioritise myself. Sympathies to you and @Fantasea caring for my DPs is one of the most difficult things I've done. Including when my DF was alive and there was lots of conflict.

@Gilead I'd probably be feeling a mixture of terrified and also glad that there was an end to the uncertainty. Good luck! There seems to be quite a few people on the thread waiting for tests or results.

I got some extravasation today at the end of my chemo with the carboplatin, I'm having to ice my hand and use hydrocortisone cream. It's not in the worst category though apparently and they didn't seem too bothered, I just need to keep an eye on it. Now I have two knackered hands 🙄.

Hi all. After hearing that the nodes they removed were clear (three were removed in sentinel biopsy when they took the lump out, one had a macromet and one a micromet so they recommended I have the whole lot out two weeks ago) they told me yesterday I’ll be having chemo. I’m 37 with a 6 month old baby. All I’ve done since they told me that is cry/be sick because I’ve worked myself up into such a state over it, I had desperately hoped I wouldn’t have to and I’m petrified of it. I have terrible self esteem issues anyway, I have not coped at all well with the postpartum changes/weight gain, I am not coping with the way my breast and armpit looks now and I will not cope with losing my hair and waiting for it to grow back. I love my husband so much but we’ve been like housemates since I got pregnant so that’s over a year now, I can’t bear to have him even hug me because I feel so repulsive and now it’s going to get even worse. I know I shouldn’t think like this and it could be much worse, but knowing that just makes me feel even more like the world’s biggest arsehole.

Does the cold cap actually work? The 10 years of Tamoxifen afterwards and all the side effects that’ll bring isn’t going to help matters either is it?

Hi @WorryMcGee - really sorry to hear your news, I can't imagine how difficult it is with a baby. Is it worth getting a second opinion about the chemo? Do you know what difference it makes to your risk of recurrence?

There is a cold cap success calculator here scalpcoolingstudies.com/efficacy-calculator/ that you can put in your recommended treatment and find out what proportion of women keep at least half of their hair. There is also a Paxman Facebook group, you'll get lots of hummus and tips on there too. It's been reasonably successful for me, I am being treated for gynaecological cancers which is a different regime from breast cancer and I was told that it would not be very successful with mine because it's four hours infusion, in fact I was the first person they ever gave a cold cap to for this treatment in my hospital. My hair has thinned a lot, and I do have some thick almost bald parting stripes on the top but you can lose a lot and it still looks fine, I had my first treatment at the middle of August and I've only needed to wear a hat or a wig in the last couple of weeks, I did wear a wide headband though after treatment two, my treatments are every three weeks. I feel okay about it being out around the house, although I do live alone it's not such a shock in the mirror, and I put a buff on my head when I go to the gym and you can see hair down the sides so it's not immediately identifying me as a cancer patient. I've not found the cold cap very difficult and I've had it on for five hours plus. I have to say I think the worry of it all has been worse than the reality of it. I've heard lots of people saying that they couldn't tolerate wig wearing and that they've bought one and only worn it once, but I've worn mine a lot, and got one that's pretty similar to my hair, my DD came with me to choose it and she said it was like my hair but combed! It's made me feel much more normal going out.

Hi @WorryMcGee , I’m also 37 with a young child and teens (not a baby though). Chemo is scary. But it hasn’t been as awful as I thought it would be really. My treatment day is a Thursday, I feel fine usually until Friday afternoon, then I have the weekend and Monday/Tuesday feeling quite bad. Like a bad hangover with added body aches. But after that I am pretty much totally normal. I stay home the next weekend as that’s when my immunity is lowest but life is pretty normal for 2 out of 3 weeks of my cycle. I know everyone is different but most people on the chemo ward seem fairly upbeat! If you feel you what a chat please do PM me anytime.

The cold cap didn’t work for me, I lost 80% or so of my hair within 3 weeks of round 1. It’s hard, to be honest I feel disgusted by myself and totally ashamed every time I catch a glimpse of myself, it’s the worst thing about this by far. But it does work for plenty of people and not all drugs cause total hair loss, some cause partial and some none at all.

@Mycatispretty thank you and sending hugs back to you, @SierraSapphire and all others dealing with looking after elderly parents. The admin is relentless, I do feel for you with the bank issues. My mum doesn't need physical care but almost every single day there is something she needs help with. The current running sore is her new email address - she surrendered her old one when she changed internet providers in a fit of temper and against my advice meaning the last three weeks have been one muddle after another. She has also been using her computer without any security on it as this too was linked to her old provider. I advised her to get a McAfee subscription which she insisted she had done but hadn't installed it so has been doing online banking and everything else unprotected! I simply don't feel up to providing this level of daily support and often I feel expendable.

@SierraSapphire you've done the right thing prioritising yourself and I understand how hard that is. I'm pleased you got your chemo today and hope your hand improves soon, that sounds miserable.