Cancer support thread 63 for a handhold or advice and anything in between

[purpleunicorns]

Continuation of the lovely Leslie's thread here as it was nearly full

If you're worried about symptoms, waiting for test results or just need a safe place to vent then pull up a seat, we're a friendly bunch and we don't bite too much

There's quite a variety of cancers on this thread so hopefully one of us will have some advice and hopefully you don't need to stay for long.

I'll start with my story:
Diagnosed with stage 2b cervical cancer in October 2017, 25 lots of radiotherapy, 4 internal radiotherapy and 5 lots of chemo. Was told last week that it's spread and is incurable, palliative chemo starts on 16th July

Addle I have the exact same feelings and find myself panicking for random reasons and getting upset when people talk about the future. I also seem to give myself targets and think "I'll make it to the end of primary school". Last week I broke down in tears because she was taking about marrying this boy from her class and I realised I might not be here for her wedding. And yes there's also the bus thing but having cancer makes it all more real.

Purple this must be so hard for you. I can't even imagine. I'm sorry for asking and don't answer if you don't want to, but have you been given any sort of timeframe? Have you said anything to your son? For all it's worth it looks like you're handling it the best you can.

Sorry to hear about your hernia Dulce. At least you'll be ok to travel though.
Hope you are feeling better Leslie. Hi to pebbles and hope you don't have to be here long.
addle your symptoms sound like mine when I am very anaemic so a blood test might be in order to rule that out. I think it's only normal to worry about dying but doesn't help when you are up at two am worrying - for me it always gets me that time in the morning.
Have any of you Capox lacies had hair loss? I didn't have any while on chemo but mine is now coming out in handfuls. I guess it could be a vitamin deficiency rather than chemo related? I didn't think you got any on Capox.

Dulce no they haven't given me a timeframe, my last consultant just said it depends on how I respond to this chemo although after talking to others its normally anything between 9-18 months but I've been talking to a lady on another forum and she's still here 21 months after having the chemo so it does vary quite a bit.

No I haven't told my son, he knows I have cancer but not that I'm going to die from it. I haven't actually told any of my family apart from my DH. It's a combination of me being too scared to tell them and not wanting them to worry just yet

Tayto I've just been reading up on capox (because its 4 o'clock and I'm wide awake as usual ) and it causes hair thinning but I don't think it should be coming out in clumps so it probably is a vitamin deficiency

Thanks Lacies. You are all wonderful and thank you for your comments which do make me feel more ‘normal’ !

tayto my hair has been coming out in larger amounts than normal for the last month or so, and is a little thinner than usual too... I will see my oncology consultant next week so will ask them about vitamin testing and blood tests too

Now I can’t remember all the other things o was going to say and my 4 year old has woken me up and keeps talking at me non stop
Though I also wanted to say ‘nothing compares 2 U’ purple

Thanks for the research purple! Also awake at 3.30am here as my daughter has crept into my bed and just elbowed me in the ear. That's what I figured. Hopefully will slow down not that food transit is becoming less ahem rapid. Also taking a multi vitamin now. Feel a bit rubbish for moaning about it seeing as some of you are dealing with total hair loss and much worse. In the scheme of things it's very small beer.
It must be really hard telling people about your prognosis, especially when things are so uncertain. How old is your son? (sorry for not keeping track!). My daughter has started waking up at night saying she is scared of dying and I am not sure if it is related to all my hospital stuff (although we just talked about me being sick with that rather than any possibility of death).

X-posted addle! Vitamin testing is a good idea.

Apologies - accidentally pressed send in middle of writing as Ocado man arrived early and the doorbell gave me a shock now have to deal with the two pest children who are tearing my sitting rm apart - will post again later with the rest of my waffle

Morning lacies

Oops! Pressed post instead of return. Chemo-brain: the struggle is real.

Hope everyone had a comfortable night (without too many little elbows etc).

I'm taking the kids to the theatre today - very excited

My two are definitely worried about me dying, as they already know three people who've died from cancer. My diagnosis luckily isn't terminal, so I'm getting them to focus on that, and it seems to be helping. My thoughts travel some darker paths, but I think that's natural, and I try to let it happen to some degree.

I keep thinking about iVampire's marathon, and hoping I'll be in the same position a year from now

Sending out shrinking vibes to all your tumours/hernias

Don't feel bad about moaning about your hair Tayto, we are all women so it's a important part of us. I'm absolutely dreading my eyebrows falling out, they're the only things stopping me from looking like a potato at the minute. Losing my hair was nowhere near as traumatic as I thought it was going to be especially when I had really long hair. I actually really like it and I'll be keeping it short when it does grow back

My sons 16 so as much as I don't envy people dealing with chemo as well as young children I think having a 16 year old is difficult as he's obviously old enough to know about cancer and he's old enough to google too which I've told him not to do

Morning Sprout hope you enjoy the theatre today, I don't think I've ever been in ivampires position. I can't run to save my life! But she is pretty amazing and I'm sure this time next year you'll be just as capable of running a marathon

Purple I can see where you're coming from with him being older and able to google stuff. I think either way it's difficult to deal with children whatever their age. And I totally get you not wanting to scare them and worry them, it must be an impossible conversation to have. How old are you? I'm sure you look like a lovely kind of potato and will still do so without eyebrows!
Currently at hospital drinking vile white liquid in preparation for scan. Have app on wed for hernia checking but will try for an emergency one this pm.
Hope everyone is ok

Good luck Dulce ** fingers crossed they can squeeze you in today.

I was most worried about my brows and lashes too, purple. Hope they stay put!

I'm 34 although I feel like a 90 year old at times! What scan are you having Dulce? I've never had to drink anything before my scans. Could you ask someone at the hospital to check your hernia?

Sprout someone told me eyebrows were the last things to fall out. I have a stencil kit ready just in case. The hairs on my legs still haven't fallen out unfortunately so I'm still having to shave them

I'm having a scan of abdomen and chest. Drink this contrast liquid and then have some more stuff put on the vein which makes you feel like you're wetting yourself during the scan. Lovely. I asked about hernia and they said gp will need to request report. To be honest I'm not too fussed with the delay as I travel next Monday and whatever this is it will be dealt with on my return. Nurse said I'm ok to travel and I've already cancelled a dream holiday so don't fancy cancelling another one if I can help it.

Purple I get you on feeling 90! I'm 10 older than you and feel like I'm falling apart sometimes. Hope you're feeling better today

Well the job centre was a waste of time! I had a long list of documentation to take, which I did, only to be told that "today all I'm doing is giving you a PIN number." Really?! a 35 minute walk each way for something you could have just put on my online account. Next I have to see a job coach apparently, even though I'm supposed to be exempt from those interviews... Humph.

Purple After going totally bald I am maintaining the Judi Dench look now that I have regrowth. I really like it and everyone tells me it suits me!

Grrrrr TQ what a joke it's such a ridiculous system.

Tayto my hair thinned lots on capox. At one point it was coming out in handfuls. I don't know if it was the drugs themselves or the anaemia. I'm anaemic now and it's falling out again.

Dulce good luck with the scan I'm always so glad I don't have to have the horrid drink

purple it's so annoying having to shave your legs while on chemo! Bloody unfair.

Miles have fun at the theatre

Sending hugs for everyone who needs them :)

As a "housekeeping" matter (not as formal as that sounds! ) we used to have lots of information at the beginning of each thread but it was quite intense and I think a bit unnecessary so I stopped posting it. But as we have had lots of useful links shared on here recently I thought I'd revive/update the list of useful links we used to have, ready for the new thread. So if anyone has any other links they think should be included then please post them here or send me a message and I'll add them to the list :)

Ah yes I've had the stuff in my vein that makes you think you've wet yourself and gives you a dry mouth, I'm convinced I've wet myself every time I've had it

TQ that's ridiculous have they put you in the support group instead of the looking for work group? You shouldn't have to go to any interviews. Did you manage to get your PIP sorted out?

Good idea about the links Leslie. I can't think of any other that the Look Good Feel Better workshops, oh and Ellie's Friends although I haven't managed to win anything yet I'll keep trying

I haven't got anything sorted out Purple. They weren't interested in doing anything. Apparently my work coach will decide whether I need to go into a support group - despite the fact that my fit notes clearly state 'terminal cancer'.

As if you don't have enough to deal with already if you ring Macmillan they'll help you with all this. Make sure you mention you can get a DS1500 form, that makes a massive difference

I got one of those too! Again, computer says 'no'. I'll take your advice and ring Macmillan!

TQ the system is rubbish tbh. Too many appointment types and too many different people dealing with each claim. We used to be able to book appointments back to back but thats very difficult with UC as there are so many mire people who need to be seen and not enough staff.

It's not up to the work coach to put you in the support group if you have a DS1500 it 'should' be automatic there is no official decision that needs to be made at all.

It might be that your work coach is a reasonable person who knows the regulations but it sounds like the person you saw certainly doesn't.

Did they scan any of your documents/DS1500 at all?

You should absolutely be exempt from appointments too. You may need to complain

Thanks chasegirl I will put another journal entry into the system about exemption. I put one in already but they've ignored it. Nothing was scanned today.

I have just rung to claim PIP and the woman was very lovely. I find it very hard to speak about it without crying but I just about held it together til the end. She said to send her my original DS1500 and they can use it to support my other claim so I will post it off today.

I'm hoping all this might be useful to others btw - I don't mean to whinge and moan but I'm new and I'm sure others must be too.