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

That's brilliant news Year. I do hope they manage to get you sorted out now though as you are still suffering. My mum had her test results on Friday. They said the biopsies showed nothing of concern at the moment but they are still concerned at her still bleeding and the thickness of the womb at her age (72) so she has to go back for another camera in 3 months time.

GP did say it's just menopause stuff but my periods seem worse since starting HRT in May. I'll be seeing someone at the hospital so I'll ask then. Thank you.

Fab news Year! It's always great to wave goodbye to those who are fortunate enough to not need cancer support. No-one wants to be here if they don't need to be. You must be very relieved.

There are a lot of threads on menopause issues in both general and women's health so you should find advice and help on those boards.

Thank you very much TQ1 for everything. I've posted on menopause so hopefully someone will see and be able to help.

Good luck with everything Year, hopefully someone on the menopause board will have some advice. Please let us know when you do get sorted out

My hairs falling out I knew it was inevitable but since this morning it's just coming away in clumps, I wasn't expecting it to happen this fast. Think I'm going to brave it and shave it all off

Sorry about your hair, purple.

That's great news @YearOfYouRemember.
@purpleunicorns gosh have you got someone who will do it for you, if you ask them!?

Good news year! Have you thought about having a Mirena coil? They can be great for heavy periods - good luck with it all

purple - I have a friend having chemo for breast cancer and it happened very quickly for her too! I was shocked how fast - yes take the plunge! There must be something liberating about shaving ones head?!

addle - I don't want the coil plus don't need contraception. I'm hoping it's just a blip. Thank you for the suggestion though.

That seems quick purple - that is why I had mine cut short, so it was a transition before it fell out. I think I would shave mine if it started falling out too... Has that pink wig arrived from China yet?!

I am fit for chemo on Thurs. I think I will cold cap again and if I get headaches again afterwards, will probably not bother after that. It just felt too much on top of the nausea, plus it will make the chemo much shorter.

Hurrah too as I think my PICC line is calming down a bit (thank goodness) I have my own PICC cover on it (which isn't a tubi grip) and it really hasn't bothered me anywhere near as much today. I must be finally getting used to it. They told me I held my arm differently when they did the bloods earlier & to relax, which seems to have worked

Also purple regarding who you need to call 2mo, do you have a cancer nurse key worker type thing? I have a breast cancer contact who is a Macmillan nurse, was thinking that may be a good place to start with the phone calls as if you have one, they can at least point you in the right direction...

No I don't think I have a nurse key worker, I've got the head of gynae nurses number in my phone so hopefully she'll know what's happening.

I've done it. I've shaved it all off and I look like a bloody potato plenty of wigs and hats at the ready but my heads really sore now so I might have to leave it a couple of days to try them on

Brilliant news about your PICC line Noodles, I've seen some really nice covers for them online somewhere

Year what wonderful news! You must be so relieved. All the best for the future and I hope that your symptoms improve soon

Pen sorry I didn't mean to be snippy I hope I didn't upset you. That's weird about the hospital - if they haven't seen you how can they know if it's something to worry about or not?! I hope the GP was able to speed it up and that your son feels better soon.

purple well done on shaving it. Now you won't end up being covered in long hairs all the time. They get everywhere. Mine took about three months to fall out, but that's not usual. I wish I'd just shaved it to begin with as it looked terrible! also every cancer patient is meant to have a named key worker, I think, so it might be worth asking about that for future reference. It's useful to have one point of contact for everything :) good luck with your chasing up.

tsonlyme I didn't have that many questions to begin with. They will give you lots of information. And hopefully you'll get a specialist nurse who you can phone or email if you have urgent questions afterwards. After the initial appointment and once treatment begins you'll probably start to think of questions so it's handy to write them down as soon as you think of them ready for your next appointment :)

noodles I should be having chemo on Thursday too (assuming my scan results and bloods are OK) so we can be cancer buddies! That seems sensible about the cold cap. At least you'll know you gave it a good try. I'm glad your PICC line is calming down a bit. How did you find the blood test? Hopefully much easier :)

Waving to everyone

My adhesions have been playing up so I've been in bed most of the day!

Did anyone else have trouble sleeping?
I kept on waking up thinking "what do I do if they don't give me an operation date today?".

@Minniemountain good luck today. I'm sure someone can give you advice for how to push for a date. Let us know how you get on.

Thank you ranout. As DH said, they have clinical timescales that they have to stick to, but it's horrible waiting (he had knee surgery in May-we've had quite a year).

Best of luck to you and tsonlyme today.

Good luck today!

Good luck today for those with appointments.

Leslie I could never be offended by someone named after parks & rec 😬

Saw GP yesterday who could only feel one of my bigger lumps, but she didn’t seem like she was really trying. Just using finger tips and pressing lightly etc. However she’s done another letter saying what she’s found and asking for me to be moved back to urgent.

I can only presume the fact I had several small lumps in both breasts meant the chances of it being sinister were extremely low so the consultant made a decision on that? Any maybe the fact I’ve had a benign lump before, or been breastfeeding recently, or under 35. I’ve no idea, strange as they confirmed it as urgent, then changed their minds...

Hopefully I’ll hear this week, but I guess 2-3 more weeks won’t make any difference to outcome.

Thank you very much WWLKD..

Hope you're seen soon pen

Hello all, just come for a bit of hand holding and any advice/support I can get.

MIL has lung cancer, it took ages to get a diagnosis and they messed up taking biopsies, lied to us they had results when they didn't and generally were pretty useless. She started chemo just before Christmas but didn't complete the round as SIL paid for private PET scan which showed she was suitable for targeted radiotherapy. Skip forward to 2 weeks ago, they had the follow scan results, told tumors had shrunk by half, all really positive, wait for the rest to die off and follow up in 4 months . NO SIGN OF IT ANYWHERE ELSE. Hooray we all think!
Skip on to yesterday and we get a call, MIL is in hospital, suspected stroke, which seems odd as she is on blood thinners due to having DVT recently. Turns out it's not a stroke at all and the cancer has metastasised to her brain which is swollen and causing her to not be able to speak and paralysed down right side.

Devastated is not the word. Also angry, so very very angry. How could the DRs say there was no signs of it anywhere else when they hadn't bloody looked!?!
She's currently being pumped full of steroids in the hopes of bringing the swelling down and then they can maybe do some radiotherapy but it doesn't look very hopeful right now.

Good luck to all the Tuesday appointment gang!

Sorry you didn't sleep well Minnie

Pen I'm glad the GP is on the case :) a few weeks won't make a difference but it is longer for you to be worrying so hopefully you'll be seen soon

Stitch sorry to hear that. They don't generally scan people's brains to check for cancer unless they have symptoms. There are some threads in the Life limiting illness topic for those supporting parents/relatives with cancer, which you might find helpful. All the best

I saw the podiatrist today to have my toe dressing changed. It's healing up nicely.

Yes, good luck to everyone with appointments today.

Good news on the toe Leslie. I bought some Birkenstocks at the weekend, which are proving comfortable. I've hidden my disgusting nails with nail varnish - I should have done that before! How are the adhesions today? I hope you're managing to eat something.

Purple shaving your hair off is definitely a good thing to do. You'll get used to it very quickly. Though if you're not having chemo again for a while it will grow back quite quickly - baby fuzz first. I have some really very good grey highlights now and my hair is definitely thicker.

I'm going through the Universal Credit application process and have several great long forms to fill in and then apparently I have to go for an interview at the job centre...

Hi TQ. I work on Universal Credit so if you gave any questions am happy to help. Although I gave been off sick for 2 months so things have probably changed. Good luck too... You may need it

Have not gave!

I'm slowly getting used to it although I'm struggling to get the hang of tying scarves that actually stay on my head so I've ordered a couple of hats from AnnaBandana.

TQ are you getting PIP, sorry I think you may have mentioned it before but I can't remember. My consultant has agreed to fill out a DS1500 form even though I've got more than 6 months left as it will benefit me not having to go to work. It isn't means tested and you don't need to go for any interviews so might be worth asking about? It's £145 a week but can't be backdated.

I rang Macmillan yesterday and they did it all for me, they should be able to help you with universal credit too. I've got savings in the bank so I can't apply for that until I've spent £2000 but it's around £130 a month that I could claim if it comes to it. You should be put in the support group which means you shouldn't need to attend interviews

Pen the fact you have a few lumps is generally a good sign, I know that's not helpful though when you're worrying so much. Fingers crossed you get seen soon to put your mind at rest

Good luck to everyone getting results today. Let us know how you get on