Cancer support 67. Waiting for tests, just diagnosed or needing a handhold through treatment

[purpleunicorns]

Welcome to the 67th cancer support thread, the previous one can be found here.

If you're looking for advice, have any questions or just need some support while you're waiting for test results or treatment to start then pull up a seat and make yourself comfortable. You can rant, cry or scream if you need to but we do have some laughs along the way

No questions are silly so please don't feel embarrassed about anything you want to post. The chances are at least one of us has been there at some point!

There's a whole variety of people with different cancers at different stages and nobody goes unanswered, the people on here are amazing (even if I do say so myself ) and they have been a massive support to me over the last year.

If you have a friend or family member with cancer then there's a support thread for you here with lots of practical advice to help you support your loved ones

At the beginning of each thread we give a brief summary of who we are and what we have to save us trailing back through old threads

Here's mine: Im 35 and was diagnosed last October with cervical cancer, despite chemo and radiotherapy I found out in June that it had spread and I'm now having palliative chemo to keep me stable. A scan a few weeks ago showed that there was no new growth after 4 lots of chemo. 2 more chemos to go for me so I'm hoping it stays that way

@noodles44 thank you! I only had three forded of docetaxcel (sp?) before they realised it wasn't working and stopped. My last dose was 4wks ago so I wondered if it was still doing something....... Nice to have a place to ask these questions without feeling like a total balloon

@purpleunicorns sorry to hear you're being kept in, fingers crossed for a quick scan 

@TwitterQueen1 glad to hear your cold is on its way out & you're not feeling sick! My appetite slowly coming back and I find myself sitting eating shit in the evenings instead of actually making something. That's never going to help my BMI when it's a fried egg sandwich and Pringles chaser tea

Off to the supermarket, wish me luck!

I need to shut myself up... as soon as I said I was OK I was promptly sick.
I think I need to move around after I've taken the tablets, not sit in bed for an hour until I can have breakfast.

twitterqueen1 so sorry you’re suffering the side effects

keepcalm hope you survived the supermarket

I’m really struggling today. My 14 yo went on my iPad and found a cancer website in my history so has been freaking out. I’ve told her they just have to rule it out - whilst knowing full well my consultant has said he’s very concerned (cheers, pal). I feel like I’m fighting a phoney battle at the moment whilst you’re all fighting real ones. Sorry to whinge but there’s nowhere else I can vent.

PS took dd to Mary Poppins Returns for her birthday treat. A film where a key plot line is a father not coping with the loss of his wife? Go me!

Toofar you are fighting a battle we have all had. Waiting to find out what’s going out is bloody tough. Nothing phoney about that whatsoever. Be a bit kinder to yourself.

How was Mary Poppins?

I've been referred to endoscopy and colonoscopy. Should be within 2 weeks x

toofar don't panic! The thing with VIN pre cancer and SCC is the treatment is more or less the same, in early stages. If, and it still is If, it's diagnosed as cancer you could well be lucky like me and just (!) have surgery or topical cream. I have 2 girls - both know I had surgery obviously, for a lesion but because I didn't need chemo or radio at this stage I haven't told them that I've had cancer. I figured they didn't need to know and would stress them. Neither asked so I'm leaving at that...mum was fixed with a wee ok, end of story. Hope that helps a bit x

And I lurked because I too felt a bit of a "cancer fraud", not quite cancery enough to deserve support. Mad.

TQ I hope you're feeling better now

purple sorry your kidneys are still misbehaving. I hope they get sorted soon so you can go home. Good to hear you're building up your strength though :) whatever you do try not to spend too long in bed. That was my mistake with the pneumonia and it's made me so weak.

Cairnzy you're not a fraud and you're very welcome here

Born I hope you get an appointment for those ASAP. They're not fun, but bearable.

Toofar I found that with nearly every naff Christmas film I put on for distraction - at least one dead family member! I hope you managed to enjoy it anyway.

KeepCalm fried egg sandwiches are amazing. And medicinal. I had egg, chips and beans for lunch. Perfect runny yolk, but set white. Just how I like it :)

noodles yay for a shower!

LondonHuffyPuffy good luck with tomorrow's appointment. I hope you get all your questions answered.

Waving to KBG, Simmi and everyone else.

I've worn myself out today with a little trip to the river, and then lunch out and the supermarket.

I had a really odd night last night. I couldn't get to sleep yet again so I decided to take half a lorazepam, which usually makes me drowsy, as I'd taken a sleeping tablet the night before (peridito if you take them too much you start needing a higher dose, which is what concerns me - I want to know they'll work when I really, really need them!). I nodded off, but I was woken a while later by my mum asking if I was OK. Apparently I was calling for her over and over. I can sort of vaguely remember it. I don't know if I was awake or asleep I was quite drowsy this morning so I managed to have a lie in without any further incident. But it was all a bit unsettling.

I've just taken delivery of an outrageously expensive Gravity blanket, which claims to help insomnia and anxiety. It's certainly very comforting. I'll report back on it.

I hope everyone enjoys their NYE whatever they have planned. We are having a quiet evening, just me and my parents and plenty of cheese-based party snacks. I don't know if we will even stay up until midnight. I'm not sure how I feel about it all really.

I'll stop rambling on.

Happy New Year lacies I know it's not going to be the best year for some of us, but I hope we can all find moments of joy and love and hope. And remember that this thread is always here for the moments of anger and sadness and whatever else

Ive got a date for my home pip assessment
sometime next week. I've got a horrid stinking cold atm.

Finally got an appointment with the breast team who think I will be lucky to survive my op due to my size, my short neck being difficult to intubte, my heart failure and the op being a long on due to having mastectomy and node clearance at the same time. I've got to have a senior consultant anaesthestist, senior theatre and recovery team and an itu bed.

So I'm kinda in a right state. Surgery is booked for 17th January. And my middle daughters 6th birthday is 8th of Feb so right now I don't know if I will see it or not.

I have nothing to do with your thread, but I do occasionally read it. I would like to commend all of you for your bravery and humour despite all your treatments and prognosis's. I would just like to wish you all well and hope the new year will bring better health for you all. 💐

Pandora just wanted to send lots of love to you and your family xx

@KeepCalm my first symptom of my cancer recurrence was a weakness in my right (dominant) hand and a slight tingling in my fingers. I couldn’t press down aerosols, but dismissed it, maybe carpal tunnel - not that I had suffered from that before. Then I noticed my right shoulder fat pad looked a bit bigger than the left, and when I poked down I felt something the size and texture of a marble. In the two weeks that followed it grew so quickly that the doctor doing the ultrasound couldn’t identify it as a lymph node but took biopsies and ordered a CT because of my history.

My treatment was in an unusual order because my oncologist had to bend some NHS rules to access a drug. I had rads first on my supraclavicular fossa, which hadn’t been treated on my first diagnosis. Then TPH chemo plus Zometa, and currently H&P plus Zometa. The rads have reduced my supraclavicular nodes down to NED, although there’s still bone and liver mets. They rarely operate on supraclavicular nodes because the surgery is brutal and risks losing hand and arm movement, but RT can be very effective. By the time I consented for rads I could barely hold a pen due to neuropathy. My hand is still very tingly and a little weak but I managed to write Christmas cards.

Good luck for your surgery. Also the DS1500 is well worth pursuing. You will get a blue badge in addition to full PIP which is £145 a week and is still payable if you continue to work

Hi Lacies,

Wishing you all a peaceful new year and strength for the upcoming trials that come with this bloody cancer bollocks!

Can't write much as I'm quite groggy with meds, but I do keep up with you all even if I don't post much lately - chemo is kicking my arse.

XXX

Pandora that's really not very helpful of them is it? I'm not surprised you're in a state. I would be too. If the surgery is so risky, are there any other options?! Smaller surgery? I'm sure I read somewhere about a trial of doing radiotherapy instead of node clearance. Good luck with your PIP assessment and I hope the cold clears up soon as if you need anything else on your plate. I'm trying something called ColdZyme that supposedly reduces your risk of catching a cold. I'll let you know if I manage to remain sniffle-free for any length of time...

Mysillydog I'm glad your supraclavicular noses have been dealt with. I wish I'd had mine zapped. It's sore today so hopefully that's the chemo tablets working on it. How are you finding chemo?

Tahiti I hope the grogginess wears off soon

They discuss radiotherapy as an alternative briefly here.

@Pandoraslastchance @Tahitiitsamagicalplace if I could do any of it for you I bloody would. You ladies rock and deserve so much more than this cancer bollox!

@Mysillydog and @WhatWouldLeslieKnopeDo thank you both!

Pandora sending huge but gentle hugs (am I ok to do that here? I know hugs are generally unMumsnetty!)

Also sending hugs, if I may, to all of you.

This cancer thing really, really is bollocks, isn't it? So many of us on this thread, at different stages of our "journey" (that word makes me want to punch people a bit. Sorry.)

I am FULL of the rage tonight. I will try to contain myself.

I had my PICC line fitted today. The Clinical Nurse Specialist who did it was THE MOST fabulous gay Asian man. Whilst he was poking about in my arm we worked out he had done 10,000+ PICC line fittings in his career and he said he was quite proud of that! He was ace. So far most of the NHS people I have encountered have been amazing.

Apart from Dr Death - Palliative Care consultant who I was referred to for pain relief. She was so very odd - loads of weird long silences in the consultation, almost like she was expecting me to lead the session. She also work shamed me - made me feel bad for taking a leave of absence from work. I have been working 10+ hour days for the past 18 months and have not had a holiday for 15 months. I neglected my health for work because I was in the middle of a big trial when my symptoms surfaced (I am a Solicitor). She eventually - and very reluctantly - gave me a week's worth of Zopiclone and renewed my codeine prescription for my bone mets. It was excruciating.

Sorry for rambling on again.

Hope everyone is ok tonight. Warm, well fed and watered, comfortable, pain-free as far as possible and getting lots of love tonight from family/ friends or pups xxx

Thank you Mummylin
Peace and love to all - especially for those dark hours of the night when we can't sleep.

@LondonHuffyPuffy I agree completely but have decided to blast 'the lost boys' soundtrack whilst eating cheese in the kitchen with DH & our two best friends. It's a remedy that's working

Pandora so glad they're getting you in the right frame of mind .Not .
Some consultants really do like to be as gloomy as possible .

Adding my thoughts and sympathies for those deprived of sleep .I've always loved the quote "sleep that knits up the raveled sleave of care ".

So cruel to be deprived . Are prescribers reluctant to be more generous with the amount ? ( I can think of reasons why )
Unable to offer more effective types ?

I’m watching TOTP2, and wondering where all those years went!

Especially as they had a bit of Quo ‘Rocking All Over The World’ - I’ve just googled and found that SportsAid (the simultaneous 10k race in 89 countries - including Ethiopia where (tear jerkingly for me) people from the camps ran it, some of them barefoot, to say ‘thank you’) was back in bloody 1986.

It’s weird to be be looking back and forwards.

Wishing everyone here all the best for 2019, with hopes for peace and stability

Oh hell

I’ve just been intemperate on an AIBU thread about childhood leukaemia.

Though I suppose as I did state upfront that I have leukaemia people might refrain from calling me over-invested. Though in that topic you never know

(On a brighter note, Debbie Harry has just been on, and now it’s Village People)

I love Rocking all over the world. Though that was five years before I was even born I wish I'd been around for the eighties. I love watching TOPT2.

We are watching Live at the Apollo whilst waiting for Jools.

peridito that's a lovely saying :)

London sorry you had such a rubbish experience with the palliative doctor. The ones I've met have been utterly brilliant. And the nurses are just the most kind and gentle people. Hopefully you'll see someone else in future! And I'm glad you've got your PICC line sorted. Hopefully that'll make everything much easier.

I've just refilled my Filofax for 2019! I have just put all the months in, as I couldn't decide when to stop otherwise.

I've done my first five days of chemo tablets so now I've got two days off to look forward to (not that it's really had any major side effects) :)

Happy New Year lacies

They’re playing it out now with a song we’ll no doubt be hearing endlessly over the next 2.5 months

Europe - The Final Countdown

I love a bit of Quo. The first album I ever bought was Backwater Blues. The first single was Come up and see me (make me smile) Steve Harley.