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!

I think it varies a little in different areas, but I actually have access to two different palliative care teams. There's one at the hospital. I saw them about a year into my diagnosis when I was hospitalised with pain from my adhesions. It was actually a huge blessing as if I'd been under the "normal" surgical team I'd have had much less pain relief. Palliative care re really on the ball with that so they got me a syringe driver and got my pain sorted much quicker. I've seen them again in subsequent hospital stays - now the surgical team just refer me straight to palliative care rather than trying to deal with the pain themselves.

I also now have a community nurse from the local hospital. She's "my" nurse and I can call her with any questions. Through her I also have access to the hospice helpline 24/7 and that includes an emergency team who can come to my house and help if needed. She's going to help with the paperwork and decisions about hospice care or care at home etc. Then she would be involved whichever I choose, either at the hospice or with nurses/carers visiting at home.

When I saw her the other week she said it was rather early to be considering these things, but I'd rather have it all organised now and have plenty of time to make my decisions. I'm actually visiting the hospice next week for some complementary therapies and my nurse is going to give me a tour while I'm there.

As you say at the moment it is just a bit of support, but they will be much more involved later on.

Hi all, just popping my nose around the door. Not sure as yet if I have cancer, saw my GP this evening and have been referred. I’ll have an appointment within two weeks. Seems such a short time but at the same time like it will take ages.

Welcome LadyMaryC hopefully you won't need to stay with us long :)

The dreaded two week wait. As I think I’ve said before, simultaneously the fastest and slowest fortnight of my life. Stay here and chat! Hopefully you’ll be rid of us very soon

Thank you for all the palliative care information. It hasn’t been mentioned to me but I’m not in any great pain and can still get out and about.

You sound like you’re being very well cared for Leslie which must be reassuring. It’s also great to know that you have the choice of being cared for at home if that’s what you’d prefer. My Mum died of cervical cancer in 1993 and I don’t remember her having that option but I think she would have preferred to have been at home for that final week. It sounds like options have improved greatly which is good.

Welcome Mary hopefully you won't need to be here long. What type of cancer are they checking for? There's a whole range of different ones on here so someone will have been through the same. Have you told anyone in real life?

Leslie your team sounds brilliant, I'm glad you're being so well looked after

Welcome LadyMary the waiting is the worst part as your imagination runs riot at times. I found it best to busy myself whilst waiting for my appointment and then the biopsy results too. I had only moved a month earlier & managed to redecorate my lounge so if I was ill, I had a nice place to feel rough and watch Netflix!
Hopefully you won't be waiting long and we will be able to wave you off soon.

How are you feeling purple ? You are up early. I started my steroids yesterday and am wide awake now helpfully!

Lesley you sound to be being very well cared for & probably best to check out facilities way before they are needed so you know your preferred option. Which complimentary therapies are you trying next week?

I had a call from my elder daughters support teacher at school yesterday. Apparently she has said she is very worried about my operation and so asked lots of questions. I think it has been explained brilliantly by her (she called me incase further questions arose so I knew what had been said) she hasn't mentioned it at all at home apart from saying she didn't want me to have an op. Really good that she has someone like this that she can speak with if she doesn't want to trouble me at all. Apparently she skipped out & seemed happy with the chat.
She met my other daughter too who told her she likes to sleep in Mummy's bed if she is hot, she likes to sleep there if she is cold, when asked if she ever sleeps in her own bed (which she does about 95% of the time) she said she sleeps there when she accidentally falls asleep too soon! Made me laugh

Have a good Thursday lacies

Leslie there are runners who just hawk themselves around any and every charity until one says yes. That’s not me, as someone (another runner) commented on this batch of fundraising ‘it’s nice to come across someone who’s really bothered, not just doing it for the entry’

There was one other charity I perhaps should have considered, as it’s in the same field. But it’s also quite well known and I guess will have settled its runners by now, and I don’t fancy another knock back.

Run Club yesterday helped - lots of us commiserating together. Also, when I catch a negative thought, i’m reminding myself that I got a place in this weekend’s much-coveted Half (also goes to ballot, I would nog have had a place if they had not given me one of theirs)

I have teens, btw, and I have no idea whether they have googled (I hope they haven’t).

Neither DC wanted active support from the school, but I told pastoral team and form teachers so they were forewarned should anything extra-tough come up. They did offer services of counsellor, but DC didn’t want that.

DS has barely spoken of it again. DD doesn’t much, but we have had some conversations about her worrying I’ll die. And if doesn’t feel like I can do much, other than give her a hug, tell her the drugs are working right now, I’m fine and I feel strong. But that doesn’t make the thought go away, nothing can. All I can do is promise that I will not keep it from her if anything about my response to treatment changes. Whilst firmly crossing my fingers that there will be no change.

I’ve realised I’ve started getting more superstitious - I’ve been saluting magpies again (anc there seem to have been so many of them around this year)

Hi ladymary I too am waiting. My appointment is tomorrow, exactly 2 weeks since referral.

What is your referral for?

Hey guys. Sorry I've been mia. Had my third round of chemo and been really unwell with dizziness and tiredness. I will read through and catch up at some point very soon.

I'm always up early Noodles, although not by choice and I did try going back to bed after I last posted. I think I need to change my sleeping tablets as they get me to sleep fine but I only stay asleep for a few hours
Aw I miss my son being small enough to sleep in my bed. He's now a strapping 6ft sweaty 16 year old so I think he's past needing to cuddle up with his Mam

Good to hear from you Pandora, I hope you pick up soon. Just think that's 3 less chemos to get through. I used to mark the days off on a calendar to see how far I'd come which seemed to help

I think I'm getting neuropathy in my bum of all places my left bum cheek has been numb for days now. I'm seeing my consultant next week so I'll see what he says about it

Morning all, another early wide awake start. I take amitryptaline and tramadol at night for pain management so no issue with getting off to sleep. But no chance of me sleeping once they wear off.
I'm to be investigated for oesophageal cancer - I don't fit in with the age or lifestyle criteria but the symptoms I'm showing could be an indication of it - hoarseness without sore throat, hiccups, bouts of heartburn and now a constant low burn at the top of my chest, difficulty swallowing (but maybe this one is just my head), weight loss - slower to begin with but I've lost 7kg in the last 6/7weeks if the scales at the hospital and surgery are accurate. Trying to eat but it's such hard work to even get a small amount down. Am hoping that it could be a reflux or hernia and telling myself some of my symptoms are from my head.
I don't want to say anything to my wife at the moment as she worries terribly and would end up not sleeping between now and my appointment. She knows I'm waiting for a scope exam but hasn't really thought beyond the hiccups. I don't want to tell anyone else about my worries before talking to her, it feels to disloyal.
Have even been taking my phone to the loo just in case I get a call about my appointment.
House is looking very clean though as I am fidgeting - a silver lining.
You all sound so amazing about how you handle everything and get on with living. I just feel numb...and scared.

noodles I'm glad your daughters have such good support at school. Your little one sounds like a lot of fun

purple I hope your numb bum wears off soon

LadyMaryC it must be difficult not feeling able to share your worries with your wife feel free to say anything here! As you'll see sometimes we talk about pretty dark stuff and sometimes we chat about dogs

pandora I hope you'll be on the up soon

I am indeed very well cared for. I'm very grateful for that. Hopefully everyone will have access to the same support if needed.

We're all numb and scared LadyMary, maybe we are just more used to living with those feelings. If it's any consolation this is the worst part - the not knowing, the waiting, the fear. Hopefully it's not cancer but if it is, once a treatment plan is in place things become easier to bear. It's going to be a bugger learning how to spell oesophageal without looking it up each time so I really hope you're not around here for long. (awful joke, sorry).

I took a friend of mine to hospital for oesophageal tests recently. She's been suffering badly with reflux and hiccups and heartburn. She's OK - they told her it was stress related. Will keep everything crossed for you.

TwitterQueen1 spelling's not my strong point so hopefully I won't need to practice this one.
This time I'd really be quite happy to be told it's stress and be on my way.
Thank you

You all sound so amazing about how you handle everything and get on with living. I just feel numb...and scared

Yep sometimes I think we’re all the same. But gradually more and more “real life” comes through and you find yourself going for hours without thinking about it!

for you. The waiting is horrible.

I echo what TQ says, the waiting is honestly the worst part of all this. Try and keep yourself busy if you can to pass the time quicker

Do you have a date for when your chemo starts TQ?

Not yet Purple . I don't think it will be for at least another 4-6 weeks or so, unless I deteriorate in the meantime. I'm waiting for Oxford to contact me ref any potential trials. My next consult appt is end of October so she may decide to give me a date then if Oxford haven't responded.

TQ I’m in there tomorrow so I’ll chase them up.

Hi can you pull your finger out re TwitterQueen’s clinical trials? Ta.

Tx Namechange!

I hope you hear from them soon TQ

Hi everyone!
I'm here, just tired and wiped out and slightly grumpy about it! I'm so annoyed that I can't talk much or walk down the stairs without feeling like I could faint. And my 4 year old is afraid to come near me because of the scar/stitches in my neck. I'm a very impatient patient!

TQ I hope you get trial news soon!

Pandora, sorry to hear you're feeling so rough. Hope you pick up soon.

Mrse and lady, the waiting really is the worst. Stay away from Google and keep as busy as possible and hopefully the time goes quickly for you both XX

Hope everyone else is okay. for you all

God they don't rush do they?!

@ Namechange. If only we could do that for each other

I know it doesn't feel like it, but it's great that you're able to walk up and down the stairs at all Tahiti. You're doing really well. But it is so frustrating, I know, when you're used to living fairly "normally" and then suddenly every tiny thing is a struggle.

Also sorry your little one doesn't like the scar. Hopefully it will heal up quickly