CANCER SUPPORT THREAD 65 - for anyone with cancer or waiting for cancer tests (pets welcome!)

[WhatWouldLeslieKnopeDo]

Good morning everyone,

Welcome to the new thread, and the club that nobody wants to join. Our previous thread is here.

Anyone with any type of cancer is welcome. And we will hold your hand if you're waiting to find out whether or not you have cancer at all.

If you've got a loved one with cancer then you can get support here.

Please feel free to reintroduce yourself so we don't all have to remember from the previous thread!

Hey, hope everyone is okay
I'm home from my first appointment with the consultant haematologist. I now have a game plan so I feel much better. Next week I'll get a PET scan and if my bloods from today aren't good, a bone marrow biopsy. Then chemo will start on 9th Nov (2 weeks) at the very latest. The chemo I'm starting on is ABVD - is anyone else on that? He said a stem cell transplant may not be necessary, and it's a long way away even if it is, so not to worry about that.

I feel so much more confident knowing what's going to happen!

minnie they originally said to me that they would take a biopsy of my lymph nodes while I was under the general during my op, but there seemed to be a sudden change of mind at my last appointment and they did an ultrasound, which came back borderline, so they then did a needle biopsy.

I do have a throat infection (I nearly always get a lingering throat infection this time of year), so maybe it will just be that? or am I clutching at straws?!

I feel like I've been let off incredibly lightly with my treatment- even though it's spread to my bones and is deemed 'incurable', all I'm having is radiotherapy (now finished), and hormone tablets and bone strengtheners. No surgery, no chemo. I've got my hair, I don't look sick.

I feel a bit of a fraud, frankly.

You are most definitely not a fraud bitoffun you may not look obviously sick, which is great, but on the downside you may attempt to do too much/ offers of help may not be as forthcoming etc. By no means are you a fraud though, just be glad you are as well as you are.

My next door but one neighbour saw my bald head the other day and realised I was ill, so has been coming round each evening ever since to take my dog for a walk with hers. Very kind of her & totally appreciated. An advantage to looking ill I guess!

Thanks minnie I will ask at my pre assessment.

purple sorry for the brief msg, I tried so many times to send a PM and my iPad just crashed & I lost what I had typed. I just wanted to say thank you for the pillow & to let me know postage costs. I hope your side effects are not too bad following chemo this week and you are feeling more human.

I cannot remember who asked about the injections, I struggled with them initially. The first one I did must have taken about 20 mins for me to pluck the courage up to puncture my skin. I did wonder how the hell I would do them for 7 cycles. Lesley gave me good advice to not be timid and it went much better the 2nd time. Actually doing the injection slowly is much worse than being quick about it. Also, another tip is to get them out of the fridge about 15 mins before you do them so they warn up slightly.

pandora have you had any joy with moving your op forwards?

I need to go back & re read the thread as I have probably missed lots of posts, an old friend has been staying since Monday and I have been up chatting with her and the odd glass of wine rather than on Mumsnet this week!

I hope everyone is feeling as well as possible.
Waves & hello to everyone...

I think that the point about ASKING for specific help is a very good one, actually. IME all sorts of people offer vaguely (and sincerely), but they don't really know what it is that they could do.

For me, the dog-walking has been a good example: I've got a lively ten-month old spaniel, who is RELENTLESS with the attention-seeking during the evenings when I just want to read in peace. If he's had a proper afternoon/evening walk, he's good as gold and just snoozes with me. Because my back has been so painful with these spine mets, my mobility has been restricted and I can't walk far.

The family over the road used to have a dear doggie of the same breed and were devastated to lose her: enter my Rory, and the husband has his nightly decompression after work, while my little menace has the legs walked off him! Win-win.

They were really happy to help, it's made a huge difference to my chance to rest. You do have to swallow your pride and ASK though.

I suppose I should provide a picture, shouldn't I?

Oh he’s gorgeous BOF!

He’s lucky he’s so cute, let me tell you!

I'm still invisible to the breast team and breast nurses. I appear to have fallen off the lists. So they are in for emails kicking arse AGAIN! Did they not learn from last time they tried to ignore me? Outcome the protocols and email addresses.

Had a reaction to the herceptin yesterday and slept for 12 hours last night but i was still tires when i woke. Today I was loaded with steroids and antihistamines and I was ok with the prejeta(!?!)

I had one csw on shift today who I used to work with. She head my voice (the unit if divided into pods so she hadn't seen me)and she came to find me and I had a cry with her. First time for a long time that I've cried(and it wasn't angry crying either)

My consultant forgot to prescribe my correct meds for home. Ive got the wrong antisickness. no oramorph for pain,no fluxonazole for thrush,no omeprazole to protect my stomach from the non steroidal anti inflammatory naproxen for pain.

Oh fuck, Pandora! Can you phone and leave a message?

Pandora the actual fuck?!!? That's appalling!! Make heads roll! Are PALS any use?

Just delurking in my Bridget Jones voice to say "what the actual fuck @Pandoraslastchance".

Get onto your MP, not sure if they can help where you are but it helps where I am. Then the press if needs be.

Thanks to all that have responded to my injection and surgery questions. I'm up to date on the thread, but being lazy! Think half term has taken its toll! Dad's 70th this weekend so hopefully a little road trip to see him (100odd miles). Normally a no brainier!

Ps I totally need a puppy! Might pop a trip to dogs rescue on my cancer list! My cats are lovely but don't curl up on me and I'd love a lap dog!

Have as good night as you can lacies and I'll be back with crafting tips next week! Basically I'm loving the needle felting so I'm getting creative!

I rang them and was told we are waiting for the prescription. Always waiting. So I'm going to ring the hospital pharmacy in the morning to see if my prescription has gone to them directly after hours as I know some departments won't answer the phone after they 'close'.

I want a kitten but oh said no. Everyone is getting kittens for the last 4 months or so but no kitten for me.

Id better fucking get one for Xmas.

In a box

With a bow on it.

That sounds entirely reasonable.

Your Rory looks gorgeous BOF if you need extra help, once I am done with the op, if I am nearby, I would happily help walk him. I have a very excitable bitsa who loves a bit of company!

pandora not sure what to suggest, can you move your care at all? I know of someone who moved to the Marsden as unhappy with the care they got not a million miles away. Are there other options with regard to where you can be treated as you seem to be being failed on so many levels? I am sure being a nurse makes you more aware of where they are falling short too, as I wouldn't have a clue if what they prescribed me was what I should be having. I hope you get all the correct meds sorted ASAP and the op can be booked in too.

I blame chemo brain but probably just me trying to do too many things at once, I have managed to book (at the same theatre) panto for the family & also a kids Christmas thing. Both on the same date at the same time... Doh! I hope they will swap the kids thing as thought I had booked it for the weekend before.

simmi sorry you are feeling down about your hair loss. I cold capped for the first 2 and then had lots of hair loss at the front, so decided not to bother (as it had also made me feel quite headachey too doing the cold cap) my hair made me feel very down as it looked very strange. I had cut it short before chemo into a style I didn't really want and felt forced into, so I shaved my head. It was very liberating and looked better than my weird slightly bald bouffant type do. I never in a million years would have thought I would have a shaved head, but I feel so much happier for it. May be worth considering if you have lost lots of hair. I kept thinking my hair looked horrible & people would think I had chosen that style, whereas when it is shaved, people think I have cancer rather than crap hair!
That said, I took a few pics of it & it looks better than I remember it, so maybe it also is to do with moods etc around the 2nd chemo as there still feels like a lot of treatment ahead and it can make you feel very down.

I hope everyone has a good night. How are you doing lesley and purple ? I haven't seen any posts for a while & hope you're both alright xx

Thanks noodles - if I tie mine back the hair loss is not really noticeable yet but will see what happens now I’ve done round 2 as I imagine I’ll lose more. I also have a nice wig which I haven’t trialled yet - I haven’t got my head round going bald yet. Maybe I’m still in part denial this is all even happening! I’ve got 2 more of the AC chemos spaced 3 weeks apart and then 12 weekly cycles of Taxol and herceptin. They tell me that the cold cap works better with taxol and may even stimulate hair that’s been lost but we’ll see! They also say the taxol + herceptin will be a walk in the park compared to AC but again I’m not convinced any of this 15 month treatment slog will be a walk in the park physically or mentally!

pandora so sorry about your problems with your team. I think looking to move to the Marsden would be a great idea if you can

Goodnight lacies

@Alwaysneedgin I know you're still going to feel terrified and this is probably not going to ease your mind much but if they suspect cancer they would have got you seen to within 2 weeks. Chances are you will be absolutely fine and it will be something that's easily fixed but until then feel free to hang around here. We have photos of dogs so it's not all doom and gloom 😊 Do you have real life support?

So many new posts today!

Bit I remember feeling like that after my first lot of treatment, you are not a fraud! In fact I think it's harder when you look so 'normal' people seem to forget that you're not well

Pandora I can't believe the hassle you're having, as if you don't have enough to deal with 😡

Noodles I'll post your cushion on Monday, maybe even tomorrow if I actually get dressed 😁 don't worry about postage, it's really light and not very big. I'm starting to feel a bit better after Mondays chemo but the fatigue is always there, I must try some exercise/yoga instead of lazing around.

Waves to everyone else 👋 and hands out ☕️ and 🍰 to whoever needs them. I have been reading all the updates but there's too many to reply to

All cake gratefully received! That's one vice I've given in to, actually- ordering delicious cakes from amazing online bakers .

BitOfFun ordering amazing cake online sounds absolutely like my thing! Where has been best?

Puppy love! Our boys look similar though it sounds like yours is a bit more full of beans. Mine is 4 mo younger so maybe it’s all coming. Right now he is snuggled up next to me like the cutest thing on the planet (except for the snoring). Tomorrow morning he’ll be decorating the house with toilet paper (I never knew the Andrex puppy thing was real!) and I’ll be wanting to list him on eBay

Oh he is so cute. Love his colouring and fur looks so soft.

Namechange - Another gorgeous Cavalier! They have such sweet gentle temperaments. Not terribly bright though. Well, ours isn’t anyway. If there’s a silly thing to be done then of our five dogs it’ll be our Cavalier Freddie that does it. He’s certainly earned his nickname Freddie Fruitcake.

Here he is squashed up in the wrong bed. We often walk the dogs in the grounds of Hever Castle. One afternoon while we were watching the ducks Freddie put his front paws on a little rowing boat. Of course the boat moved fro the side of lake and in poor Freddie went. Luckily it’s only shallow at the edge but he’d got wet enough to be very stinky in the car home. He’s such a sweet lovable silly old thing. He reminds me of The Moog from Willo the Wisp.

Awww thank you. Zero brains here! Very loving and gentle though so I’m fine with the daftness! He comes to the office with me most days so I spent ages choosing between breeds for the best workplace dog. Not that you can ever really know.

Freddie sounds hilarious! He needs a kids’ TV show!