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

Simmi yes it's a very interesting read actually - a lot of info about combining certain foods in order to boost their individual goodness. It's certainly stopped me using processed oil in my cooking!

Leslie I hope you managed to get some rest. Just about to have my first injection so we'll see how it goes!

Good luck KBG

Simmi good you're feeling a bit better and getting out. I'm definitely in the cake-eating camp

Just wondered about hair loss with anyone else on Docetaxel? I'm now on Docetaxel/Herceptin/Perjeta. I noticed yesterday whilst having a bath that hair now seems to be appearing under my arms and there is definitely some soft fuzz like stuff appearing on my head!

Eyebrows are very sparse and wispy but eyelashes seem to have largely survived.

Has anyone else had hair re-growth whilst on this chemo?

I try to eat fruit and vegetables but have to be honest that I have developed a really sweet tooth since having cancer. I love haribo sweets and eat cake whenever there is one available that I like. Also crumpets with butter and syrup.

mrs my BC nurse did say some people see hair regrowth on that chemo and some see more loss. It seems you’re one of the lucky ones . I’m about to start that combo in a couple of weeks. I also have sparse eyebrows now but they look ok filled in with pencil/gel. I can’t wait to get my actual hair back.

I randomly add turmeric to salads etc now on the off chance it’s actually helpful in getting rid of cancer .

Ouch those injections sound awful Leslie. Would heat wraps help your knees? Or amazon do a rechargeable square shape hot water bottle that you could take out and about when you're in your wheelchair

MrsT I'm on a different chemo but the hair on my head is slowly starting to grow back although it's just fluff at the minute. Your body does get used to some chemos and hair can start coming back after a few treatments. Luckily my leg hair isn't growing back at all yet

Thinking of you TQ. Hopefully you'll get the trail you want

Thinking of you today TQ especially with the Churchill parking

So having said I didn’t want any scan results today, my consultant range me supposedly to talk about chemo on Tuesday but then dropped in the news that my scan showed good improvement from the last. She apologised for being sneaky!

I'm using my heat pad on them and jiggling them about seems to help it's not the pain that's bothering me so much as it makes me even more unsteady on my feet.

How are you feeling today purple?

That's wonderful news Namechange

My hair fell out then grew back while on chemo.

Thinking of you too TQ.

That's brilliant Namechange!

I've been googling nephrostomy tubes and speaking to people who have them done. No baths, uncomfortable to sleep with, recurrent infections and I normally live in jeggings so that won't be possible as the tubes come out of my kidneys and are attached to a bag on my thigh so I'll have to wear baggy clothes otherwise they'll be really obvious. I shouldn't have asked, ignorance is bliss

Work is having a party for me on Thursday so I'm hoping it can wait until Thursday afternoon. They're going to speak to me about handing my notice in which I've been going to do for months but they said to wait incase I can get any extra benefits, I don't think there is but I do think they're expecting me to go back at some point I wish I could

I applied for new style ESA a couple of weeks ago and got the payment in my bank today so I've been really lucky with getting benefits sorted out compared to some people. New style ESA isn't means tested and if you have a DS1500 and have worked within the last 2 year then you should get it. It works out around £110 a week and you don't need to go to any interviews apart from taking your ID in

That's good news about the ESA purple. I'm still waiting to hear back about my PIP.

I hope the stents have started working properly so you can avoid the nephrostomy tubes as they sound like a real pain in the backside, to put it mildly. You've still got a few days before the next blood test so fingers crossed there will be an improvement

It's nice they're having a party for you how do you feel about handing in your notice?

I can't believe you're still waiting for PIP it should be sorted within 2 weeks with the DS1500 form

I've been off work for 6 months now so I've got my head around not going back. I'd love to though, it wasn't a job that would change lives (I worked in a supermarket) but I loved it. I really miss the people I worked with and the customers. I see people complaining about having to go to work and I just think you really don't know how lucky you are. But I don't think anyone appreciates things until they don't have the choice anymore.

If I get a break from chemo in the new year there's a really good cancer charity I support so I'm hoping to do some voluntary work for them. It'll get me out of the house if nothing else

I won't find out which trial group I'm in today unfortunately. My results get sent away and then I'm told. Had obs, ct , waiting for ecg then echo.
Am making formal complaint about pip, they are being absolutely useless.

Leslie are those the injections that are meant to help improve blood count - if so I have them for 7 days after each chemo and they do make every part of me ache but especially my lower back which is normally a bit troublesome anyway. The injections seem to seek out one specific area for special aches and pains - sorry to hear they are affecting your knees but glad that paracetamol has taken the edge off the pain. I resort to prescription strength co-codamol for the few days the aches are bad.

TQ - it makes me so annoyed that you are still waiting for your PIP to be sorted. What on earth can take so long?

Simm. I am not getting too excited about the hair regrowth yet - it's barely noticeable . At this rate it's going to take a long time to grow back! I have a feeling it is going to grow back white. I have to use an eyebrow pencil now too.

Hope everyone has a good weekend. I don't have a lot planned apart from lunch out on Sunday. Chemo to look forward to next week .

Hello 👋🏻

Sorry to be so absent but between the in-laws being here and being absolutely floored by a cold I haven't been up to much.

Head oncologist just phoned to say they're referring me for an urgent CT scan on Monday. That my MRI shows the chemo isn't having the desired effect & my tumour is extremely active and has gone from 5.2cm to 7cm. The CT scan will give an indication regards what's happening in my lungs etc but the surgeon has now said my case is urgent and he will make space by removing someone less urgent from the list to make sure it's dealt with ASAP.

I won't be having my next chemo. I don't know what's going on and won't know till after the CT results come back.

My kids are sitting here on the sofa oblivious. My brother and my niece are on the way up to visit.

And I'm sitting here knowing something SO monumental for their lives and just feel like the floor has fallen from under me......

Sorry. I literally have a spinning head and have to sit here with my face plastered on.

MrsT apparently I'm not ill enough (not entirely sure how you can be iller than terminal, other than dead)
Namechange Fab news about the scan! Love your sneaky consultant . A certain mumsnetter has a parking space that she has very kindly lent me.
Purple I miss work too. I've wfh for years so I didn't know people very well (my team is all over Europe) but I miss the sense of purpose, the online friendship...

Keepcalm so, so sorry. What shit news and such crap timing. I'm guessing they will move you to a different chemo. My last two chemo courses only temporarily halted the cancer, which is why I'm now facing third-line and hopefully chemo tablets. Do you know if there are there any trials you might be eligible for?

Keep Calm that is shit news. I'm so sorry. No wonder your head is in a spin.

Oh Keepcalm have a massive hug as TQ says they will probably move you onto a different chemo but obviously it's such a shock. Have you told your brother or anyone else?

@KeepCalm 

Sorry, sent loads of virtual flowers but they went awol

He's only just arrived so suppose I better go share the news. We only have each other as our parents are both deceased.

Sending lots of love to Keepcalm

They are obviously acting very quickly which is as good as it can be. And they do have lots of chemo regimes to try so knowing now that this one doesn’t work must be the best thing so you can move. Horrible news for you to try to process though

Oh shit KeepCalm what a nasty shock the "good" news is that they've noticed what's going on quickly and they're prioritising you. Hopefully you'll get a new treatment plan very soon. I hope your brother is currently giving you a massive hug.

Mrstraveller I've been using Tiger Balm neck and shoulder rub which also seems to help a bit. I have fentanyl patches all the time anyway, so I expect they're also doing their thing.

purple I've emailed Macmillan to chase up. Volunteering would be nice

Must dash. Dinner's ready. Love to all.

TQ I hope all the tests went well and that you're not too worn out after a day at the hospital

My portable oxygen machine has arrived so I'm testing that out at the moment. Hopefully tomorrow I can take it for an outing.

I'm thinking of you lots KeepCalm

That is rubbish news keepcalm as the others have said, it is good they have noticed, that you are being prioritised and they can change your chemo to something more effective asap. No wonder you are reeling though. Esp as it is Friday night and you'll have to wait all weekend for any new info I expect too.

namechange that was really great of your consultant. Glad you will not be worrying now as a result.

I hope the portable oxygen is manageable Leslie and you get out with it ok 2mo.

mrsT my hair mostly fell out on the EC chemo and looked less patchy on docetaxel. I am 6 weeks on from my last chemo now and everyone keeps commenting about how much it has grown/filled in. I even had to put serum in it the other day as it was a bit flyaway on top! My chemo nurse recommended the hair & nail supplements from Boots to help it all grow and said anecdotally that she thought it had helped other patients. I haven't been into a Boots yet, but fully intend to get some when I do.

My Mum and Dad arrived, but opted to stay in a B&B for a couple of nights so that I have a bit longer in my own bed with space. I am shattered so have sent them to the pub for tea as I am off to bed early.
Have a good night everyone. Thinking of you keepcalm

Hi all. Am new to this thread and about to read through. Have just been referred today on the two weeks pathway as my physio found a tumour in my ankle when he scanned it. Hopefully it's benign but still a worry.

Hello lacies. I'm lurking but not posting much as not having treatment now (touch wood). Like to see how you are all getting on though. Glad to hear you are getting out Leslie and sorry about the kidney stuff Purple that sounds like a nightmare. Thinking of you keepcalm. Welcome Nico the waiting is the worst.

Following on from simmi and KGB's talk of diet - and hoping it doesn't come across as tactless - I promise I haven't joined the coffee enemas and broccoli smoothie camp! I found this podcast on diet and cancer really good. It is by an oncologist and very evidenced based and realistic.