We're not that old but we're losing our hair... Do you still need us, now we're sixty four?! - CANCER SUPPORT THREAD 64

[WhatWouldLeslieKnopeDo]

Me again. Even attempted a vaguely witty title. Hopefully not in poor taste

If you have cancer, or you're waiting for test results to see if you do, then please pull up a chair and introduce yourself!

Some of us have been here for ages and others are just going through the testing process now, so there's bound to be someone who understands what you are going through.

Whether you are a newbie or an oldie it can be helpful to post a quick recap of your diagnosis/treatment to date just so that other posters can keep track without having to search previous threads :)

If you have a relative who have cancer then there is a thread just for you in the Life limiting illness topic, with lots of others who are sadly in a similar boat and able to support each other. Other threads in that topic might also be of interest. We wish you and your loved one all the best

Below are some links that might be useful. But feel free to ask any questions at all. Nothing is off limits here.

Cancer patients are eligible for a medical exemption card for prescription charges - there is some information on the NHS Business Authority website or you should be able to get the form from your pharmacy or GP surgery

You can find information about the individual chemo drugs or regimes on the Macmillan website here

See if there is a Look Good, Feel Better workshop near you - they are especially useful for advice on disguising missing eyebrows and eyelashes

Ellie's Friends
Something to look forward to
Cancer Research UK
CRUK science blog - this is interesting and very useful for getting the facts behind any big cancer headlines
Breast cancer care
Shine cancer support (for people in their 20s, 30s or 40s with cancer)
NHS What do cancer stages and grades mean?
Macmillan staging and grading (this is in the breast cancer section but applicable to many other cancers too)
CRUK stages of cancer
CRUK cancer grading
Don't forget the kids

Gosh purple 3 litres! You don't do things by halves. Glad your surgeon was on top of it.
Namechange that doesn't sound normal for a picc. I did have an infected one and they dealt with it pretty quickly. Didn't look that bad - just a little discharge. Good to get it checked out.
Leslie great news the chemo is working. I'm feeling pretty good thanks. Still have a bit of peripheral neuropathy in my feet but just annoying rather than painful (weirdly it came on after I stopped chemo). Lots more energy. At a conference in the south of France at the moment drinking lots of wine, swimming, and catching up on sleep working hard.
Hello addled. Nice to hear from you! Glad things are getting sorted in the house - still can't believe you managed to move while having chemo. Can't help with cancer balance as currently it really doesn't seem real that I had it. If it wasn't for all the monitoring appointments it really seems like a dream.

P.s fab news about the scan Dulce.

Hi tayto! Enjoy France you lucky thing! Have a or 3 for me while you’re there! Yes it does feel like a dream - well, a nightmare I suppose - sometimes to me as well. I think we just get on with it like robots when we are told ‘cancer’ and then afterwards try to be normal again —whatever normal is

Thanks namechange - empathy is good. Difficult to come by IRL sometimes

purple apologies for the total flippancy in my post - just reread it and feel

Also, tayto I am getting slightly worsening neuropathy too - mainly in feet. Way less unpleasant than the cold Oxi neuropathy but still I keep bumping into things and I think it’s because I can’t fully feel where my feet are

leslie that's great news...so pleased for you.
Incredibly it is over a year since treatment finished and I could dedicate myself full time to writing nonsense for magazines!!
Take care everyone... and if anyone has a breast cancer question I will endeavour to answer it!! Xx

Addle and tayto I'm so glad you posted. My feet have also just gone funny about 2 months after I finished chemo. Had to many questions to ask consultant yesterday so forgot about this one. My feet are tingling quite strongly and my hands are a bit less but it's still uncomfortable. And weirdly the left hand side is worse. Any ideas how long it lasts? Is there anything that can be done?
Glad you're ok and I'm the same re the balance. Think it's about learning to live with it.
Lesley you're made of strong stuff and I'm glad you've had some good news. I love it when we prove doctors wrong
Purple I hope you're feeling better at home. Stay safe and rest. What a fright.
Waving to everyone else!

Dulce I looked it up and it should settle or at least improve within 6-12 months of stopping treatment. Because we only had 3 months (and the previous regime was 6 month) I am hoping it will disappear but that may be optimistic!! Watch this space I suppose (as with everything else)...

addled and Dulce my chemo nurse said it coming on a while after after chemo was quite common . I think they can put you on gabapentin if it is really bad but that has side effects. I keep meaning to research to see if anything else would help but haven't got around to it (hoping they will say reflexology and !). Let me know if you find anything out. Mine are very tingly and numb feeling (sort of like pins and needles after you've sat on them for a while). It does make it a bit harder to move as I feel I can't feel them. Hope it wears off!

X post addled that sounds positive!

lesley that is great news and also that you can still enjoy cake at the chemo ward & see the nurses there regularly still

purple I cannot believe you are at home already, I hope you have a comfortable night.

namechange I have a PICC & mine does leak blood and look quite crusty from time to time. I think I do something weird in my sleep and lie on my arm, it has never caused an issue though. Def worth getting yours checked out. Mine did take over a week to settle down.

Good to see so many posts from people who haven't been on in a while... I cannot scroll my iPad & my brain isn't taking me far tonight re names, so apologies for the lack of name checks. Glad to see everyone is doing well from the other side of treatment. addled glad you are settling into the new house, what a mission to have packed up & moved whilst having chemo.

I did mention to the chemo nurse when discussing nosebleeds etc Lesley but will mention at my next consultants appt. I am keeping my intake of liquid up to counter it! You are right TQ it is the gift that keeps giving. Weirdly my tongue was really sore yest and Monday & has gone down today thankfully as I was talking like I had been to the dentists and had a numb mouth! I think I am picking up again as feel generally more human today. My next chemo isn't until next Thurs, so looking forward to feeling more reasonable for the next week (hopefully)

Busy on here this evening :)

I'm quite tired so I will just post quickly to say hello to everyone. Thank you for your kind words.

TQ good luck for tomorrow's scan. I hope your veins cooperate :)

purple hopefully you'll sleep better in your own bed. Take it gently and I hope you feel much better soon

planned if you're reading then I'm thinking of you

I hope everyone has a good night's sleep and I'll try and catch up tomorrow

Good luck today TQ and hope everyone else got rest. Enjoy the next week noodles - it feels weird going into hospital for them to make you ill again! Chemo is strange and horrid ...

I may be being over optimistic tayto and dulce as I reread the literature I found and it is a bit vague, but am still hopeful that we will at least improve over the next months (FX!)

Been for a run already (that’s 7 in a row with one rest day in the middle!) but am woefully unfit now so it’s a struggle - have to get up at the sparrow’s fart to actually get away from demanding children and DH time too which is hard but at least for now the mornings aren’t too dark...

Just popping in to wish TQ the best of luck with your scan.

Feeling pretty rubbish atm so I'll catch up properly soon

CT scan done and dusted! They're so efficient. And no Popeye arm either.

Purple rest, rest and then more rest. Not always easy I know but doing nothing is the very best thing you can do.

Addle well done for running. I am in awe.

Noodles feeling human is not to be underestimated. The brain fog and zombie state is so frustrating and debilitating.

Leslie hope you're feeling less tired today and taking comfort from a positive scan

TQ I got my PIP authorised via a DS1500. I didn’t fill in the form, I was about to but the benefits advisor suggested I get the CNS to write a DS1500. I think the key is to fill in for your worst day. So if you have difficulty preparing a meal in your worst day, the answer is Yes, not Sometimes. I think you can also write Yes if you have the difficulty more than 50% of the time, Sometimes is for less than 50% of the time. But the form doesn’t tell you this, which is why you need a benefits advisor. The good news is that when they review their incorrect decision you will get back paid from when you started the application. I was back paid from June. Good luck for your scan xx

I think the DS1500 does go somewhere else to the form you fill out yourself. You don’t need to fill in the form if your CNS or consultant does the DS1500 though. Your team should know how to do this, if not contact McMillan.

Thanks MySilly - very helpful

purple - hope you are getting rest and that you feel stronger tomorrow

TQ - it’s only partly running really but more walking but let’s call it running anyway

Whoooo I'm say having chemo number 2 at the moment. My wigs arrived from China. They are brilliant. I'm still exhausted all the time but I need to start pushing a bit so I can go swimming and help shift some of this weight as all I'm doing is sitting, sleeping or attending hospital for wretched appointments.

I'll post more when I get home.

@Pandoraslastchance let us know how you get on. I had my second lot on Tuesday and fingers crossed feel ok. I've collected the littlest child from school, taken him for lunch and now on the sofa listening to transformer rescue bots!
Your wig looks great. I've still got a bit of hair which my hairdresser has cut very short today. I cold capped for my 2 sessions but I've a feeling there won't be much left to cold cap next time round!

Hi everyone,

I’m currently sitting in the Marsden waiting to go down to have a port fitted and saw this thread.

Just hoping to join you for general info and chit chat if that’s ok

I started IV chemo and oral chemo last Thursday so it’s early days re chemo but my cancer isn’t curable so there’ll be a fair bit to come I suppose.

Look forward to getting to know you x

Ooh pandora that pink wig is lovely!

Hi Aimless, my cancer can't be cured either and there's a few others on here the same. What cancer do you have? Mines in my liver, cervix and bowel at the minute. Is this your first lot of chemo?

Good luck with your port AimlesslyPurposeful. I've got one and it's great. I'm currently having my 39th chemo via it :) I'm also incurable. What type of cancer do you have? Mine is bowel, but spread to lungs.

I hope everyone is having as good a day as possible

Trying to have a quick catch up of what I've missed. Dulce that's brilliant news! What a relief

Mymar try hot water bottles for joint pain, I find they really do help

Namechange I'm sure your friends or family would be more than happy to go with you. People don't offer as they don't think you want fussing over but if any of my friends asked me to go with them I'd do it in a heartbeat

Addle I'm glad you're finally in your new home. Don't push yourself too much with work, you are much more important

I'm feeling slightly better today, I need to go back for a blood test at some point as I may need another transfusion before my next chemo. I have no idea how people sleep in hospitals, the nurse came in every hour to check my obs and turned all the lights on every time

Aimlessy I’ll shuffle across and make some space for you here on the incurable bench! Mine’s bowel with lung mets. I did have liver mets which have been dealt with so the lung thing is a bit of a blow and I only found out last week, so we’re maybe at a similar point of making sense of it all (or trying). Good luck with the port

Hi Aimlessly
Ovarian here. Also incurable. Settle in and make yourself comfortable.

At the beginning of each thread we usually give a brief summary of what we've got and where we are with treatments. If you want to, you might like to do the same?