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

Thanks for asking Noodles, no issues as far as I can tell with the fistula. I'm feeling slightly worse today and I'll feel rubbish by the end of the week. I just have to keep in mind it won't last forever and I feel better next week. I hope you're feeling a bit better today

Twittle I have no idea what your poo is supposed to be like after a colonoscopy but I'm guessing the fact that you've had one is a good sign?

Leslie is it worth giving your nurse a ring? I really hope you managed to get some sleep last night

Hi Leslie we chatted only the other day about my hope that I would be curable (even a remote home!). I was diagnosed exactly a year ago with stage 4 colorectal with liver mets and lymph nodes. Had chemo, radiotherapy, liver op and back on chemo. All seemed to be going well and liver and primary looked good but on Friday they told me that they think I now have lung mets to worry about too and that this puts me pretty firmly into incurable. I’m 34 and fairly healthy and active for now (work full time running a business, exercise a few times a week, run around after a puppy, run a Rainbow group full of crazy 5 year olds, actually that’s pretty much like the puppy etc etc!) so I thought they were being relatively positive about managing it as I am really lucky with side effects, and about trials if needed, but I am a big one for hearing what I want to hear so might be being crazily unrealistic. My treatment won’t change until the end of this block (Oct) and I won’t have any more scans until then so I am sort of treating it as business as usual until then.

Sorry for the ramble. I’ve lurked for a long time on this thread and it’s such a great resource.

Twittle if you are still in pain, is it worth giving your consultant/Team a call to check it is normal? If it is, there may be something that can be prescribed to ease it all, or they may prefer to have you in again to check all is fine. Like purple says, the fact there is movement is probably a good sign, but you have been uncomfortable for a while now.

The flu feeling thing is (new) side effects from my last chemo, so a royal pain, but at least I know it is not actual flu. I was up a lot of the night with joint and bone pain, but I seem to have got it more under control this am. I can phone the chemo ward for stronger pain meds if needed.
My eldest was up and dressed before 7am again and is itching to go back today. My Mum will take her this am as I am moving like a 150 year old! Luckily my youngest is going on a farm day with her best friend today, so I am going to lie in bed & make the most of the peace. She starts school 2mo.

purple I hope you don't feel too rotten, what are the expected side effects from this chemo? Like you say, it helps to keep in mind that the chemo has made you feel like this rather than something else. Glad the fistula is not troubling you at all this time.

namechange sorry you find yourself here, there is lots of experience/advice on this thread sadly, but I have found it a good support and it has stopped me having a full blown panic from time to time.

I hope you feel a bit better today Leslie & can get your meds sorted so you are more comfortable.

Hi Name but sorry you have to be here, I'm 34 too and mines incurable but still treatable at the minute (started off cervical but has now spread) wow you are busy! I've put a sick note in as I hardly have the energy to move from the couch

Noodles I think it's just general chemo side effects (nausea/feeling like shit) although this lot of chemo has totally floored me. I managed to work full time right through my last lot. Make sure you do rest while you have the chance and if the pain gets too bad ring the hospital. There's no need for you to suffer any more than you need too

I've just rang PIP as Macmillan put my claim in over a month ago and I should get a payment in my bank tomorrow! So pleased that's one less thing to worry about. Did you manage to get yours sorted TQ? I hope your private insurance was of some help if you did manage to ring them about bringing your scan forward

purpleunicorns so sorry to hear that. I wish no one was in this position- I’d happily take it just being me, but there is some comfort in hearing from other people. Being busy helps me, and I have been ok so far because I just don’t seem to react to much drug wise, but I am sure that will change when they have to try me on more things. I still spend a LOT of time on the sofa though! I think the NHS should be funding our Netflix.

Hi everyone

Just trying to catch up!

noodles I hope the flu-iness eases up soon

purple I hope you don't feel too bad before you feel better. In the early cycles I spent a lot of my time reminding myself that nothing is permanent!

Namechange hi, but I'm really sorry the fucker seems to have set up shop in your lungs just what you don't need. I can't remember what I told you, but I've got lung mets too - coming up for two and a half years since it reared its ugly head again. I'm exhausted just reading what you've been up to, but staying active will make such a difference, even just to how you feel :) I have had lots of issues with asthma recently and it has massively reduced my activity levels, which has had a huge knock-on effect on my side effects and general wellness

TwittleBee I had about ten days between my colonoscopy and my bowel surgery and my bowels never returned fully to normal in that time. I guess it takes a while for things to calm down after all the aggravation. But if it doesn't improve soon maybe check with your GP or the specialist nurse (I think you said you had their contact details?)

pandora you've got such a lot on your plate. I hope you've managed to rest today and that you're on the mend

My oncologist referred me for an urgent CT scan this morning and they managed to fit me in within a few hours! It should be discussed on Friday and I'll get a final verdict next week, but the current plan is to switch regime as this one is making me so unwell so he thinks the costs outweigh any further benefit that I'm likely to get. I'm quite relieved, to be honest. Obviously I wanted the chemo to work forever, but it's making me feel shit and I'm getting fewer good days in between the bad ones.

I'm waving to everyone and hoping you're all feeling as well as you can be

Leslie asthma seems very unfair. Is that a result of the lung mets or a bonus? Not being able to breath really scares me. So far my lung symptoms are minimal but I’m definitely worried about them getting worse. Liver was scary but also easy to forget about day to day, and annoyingly now clear. Non stop fun this! Saw the nurse today to flush line and she was in tears when I updated her! I have hardly cried myself and I seem to constantly calming down healthcare professionals at the moment. But lovely that she cares so much. I couldn’t do her job.

Sounds like a different regime is a plan. You can’t carry on feeling this bad. I know they said to me they have a lot of different options to try, but I get that you want to stick with what you know is working.

Aw it's lovely that she cares so much, but it is tough having to comfort the HCPs

Not being able to breathe was, and still is, my biggest fear. I've had some episodes of very restricted breathing and it has never been as bad as I feared it would be. But still horrible.

I had very mild asthma many years previously (secondhand smoke at uni ) but I think the new flare up was perhaps a combination of the lung mets and the chemo. Lots of people with lung mets seem to be prescribed inhalers though, even without an asthma diagnosis.

I'm feeling hopeful that now maybe some of my side effects will ease and I'll be able to have a bit more normality.

Hi Purple and everyone. No, I haven't got my PIP sorted. I sent my DS1500 about a month ago. I completed and posted another big form about 2 weeks ago - and sent another copy of my DS1500 and sick notes but they've texted today to say they want me to see a health consultant. Clearly I'm lying about the severity of my illness.... . I had an awful call from my work's health insurance people last week - it reduced me to tears. So many very personal questions that not even my medical team would ask me.

I haven't bought my scan forward as I'm OK most of the time though conscious of course that a rise from 69 to 104 in my CA125 marker with a norm of 35 max means that obviously the bastard is making itself cosily at home in my lower abdomen.... I know that a couple of weeks won't make much difference as everything 'down there' is still working normally if you get my drift. I'm guessing I'll be back on chemo very soon.

Also, busy week next week - DD3 goods & chattels to uni (she's coming back for a couple of weeks but wants to 'bag' her room). DD2 has a job assessment on Tuesday requiring a 6.45am departure from home! Social event Wed, scan Thursday, coffee with friend Fri.

Leslie glad you got some progress today. Fingers crossed for a more comfortable course of action going forward.

Noodles hope those bones have eased up a bit.

Namechange don't forget to rest!

That makes me sooo angry TQ I cant understand why you're having so much trouble with PIP when all I've done is tell Macmillan I have a DS1500 and ask my consultant to send a copy to PIP and mines gone through with no issues. As if you don't already have enough to deal with

I'm glad you've got a busy week ahead, hopefully it will help time pass quicker and take your mind off things

Leslie that's great that they've managed to get you a scan so quick! Hopefully the next lot of treatment will be a bit kinder to you and you get more good days out of it

I'm feeling worse as the day goes on and I know this is the best I'll feel until at least Saturday/Sunday so I've been dozing most of the day to pass the time. It's mainly the awful taste in my mouth that bothers me the most. Any tips to help? I've tried sugar free sweets but they all taste awful

TQ what a bloody farce. Have you spoken to the Macmillan advisors? Maybe one of them could chase it up somehow?! And I'm sorry about the insurance company too some of these processes are just so heartless

It sounds like you've got a busy week ahead so it seems sensible not to rush the scan. Good luck getting your daughters sorted

purple on the worst days I just lie in a dark room listening to classical music. For the nasty taste I've found spicy and sour tastes help more than sweet ones. Everyone recommends ginger but I'm not that keen on it, so I ate lots of those Lotus caramelised biscuits first time round. Orange juice is the best drink I've found as it cuts through the taste. Other things that sometimes help me - gazpacho, those green jalapeño slices you get in a jar, spicy or salt and vinegar crisps, sweet chill sauce, sriracha, raw onion... basically anything strong enough to overpower the funny taste. As you can imagine I'm a delight to be around!

Leslie and Purple I might try Macmillan tomorrow. Clearly I'm not dying properly....

Good luck do you have a Macmillan office at your hospital? I spoke to the woman at my local one today and she's filled in a referral form to their benefits advice service so hopefully that will get the ball rolling. I think you can access the same service by phone though.

purple do you like sparkling water? I have found the flavoured bottle green water (pomegranate & elderflower or coconut & mango) have made my mouth feel nicer. I was bought some queasy drops, but cannot bear the flavours since my constant nausea from the 1st chemo drug (you are welcome to those, if you think they may help I can post them up to you if you pm me your address)

I cannot believe you are running into such problems TQ with the PIP - hopefully once this health consultant has met you they will sign it off and feed back the many issues you have come up against with this claim to make the process more straightforward. I know they don't want to make a payment to someone who is not eligible, but you clearly are and having to deal with this on top of everything else must be very distressing. It sounds like you have a good/busy week coming up though.

Leslie good to get that CT scan so quickly. I hope that the new course of treatment leaves you feeling a lot better than your current one is doing.

TQ definitely give Macmillan a ring tomorrow and ask to be put through to the benefits section. All they asked me for was basic details (what cancer/your name/address etc) and the date that they put in your DS1500 form. Have tissues handy as they're so nice they made me cry

Thanks for the tips Leslie, I'm currently munching on pickled beetroot which is helping. I've never heard of queasy drops Noodles but I'm going through loads of sparkling water and pineapple juice which means having to drag myself up to go to the toilet far more frequently than I can be bothered to do

I saw this mentioned on Facebook earlier. It's a picture book for parents preparing young children for their death. One of the authors is dying of cancer herself with two young daughters. I know it's such a shitty thing to have to talk about, but I thought I'd mention it just in case it's of any use to anyone here it hasn't been published yet, but the writer with cancer is going to be on Radio 4 Women's Hour tomorrow to talk about it. So that discussion might also be useful.

noodles I have some queasy drops too and also can't bear them not sure where they are but if I can find them I'm also happy to post them to anyone who wants them. Lots of people swear by them.

purple pickled beetroot sounds ideal. I hope it helped. I avoid beetroot now as I always forget about its err after effects and think I'm bleeding to death

Goodnight lovely lacies

purple did you get your DS1500 before you phoned Macmillan or did they arrange that too? My oncologist didn't really know what to do and there was lots of rummaging about looking for forms. Then he said my specialist nurse could sort it out. But she directed me to the Macmillan woman, who then referred me. Nobody seemed to know much about the DS1500 but surely they deal them all the time

Sorry to bombard you. It's not at all urgent, so please don't worry about replying when you're feeling grim

I asked my consultant about the DS1500 form and he agreed to fill one in then i rang Macmillan and told them I was getting a form. Macmillan filled my claim out and then I asked my consultant to sent the form to PIP. I think I've been really lucky with how simple it's been! Although it should be like that for everyone
I also asked for a copy of it myself and I discover it's spread to my liver and bowel. Nobody bothered telling me that bit

4:30 and I'm wide awake as usual

I think it's best to do it over the phone as they have dedicated benefits advisors who know what they're talking about

I cannot believe that you found out it had spread to your liver & bowl because you requested a copy of a report and read this info there purple that is awful & completely beggars belief.

The queasy drops are boiled sweets in various random flavours. They are supposed to help with the nausea. They are individually wrapped & I have 2 packs with a few missing. Just shout if you want them.

I am impressed by the level of tasty things you can manage Leslie & Purple I am normally able to eat my body weight in chilli, but since chemo my mouth is pretty sensitive and what I would have considered to be a tiny amount I now find spicy! I am saving a fortune on chilli pickle

*bowel not bowl. Sorry

I also asked for a copy of it myself and I discover it's spread to my liver and bowel. Nobody bothered telling me that bit wth? Has there been a history of you not being properly informed? I can’t believe this is how you would find that out.

I hope you get some rest today purple after being awake in the night and don't feel too grotty. I was awake in the small hours too (prob as I napped so much yesterday) I managed to read a whole Rachel Abbot book on my kindle in one sitting! Just about to get up before the kids wake up as it is my youngest DD's first day at school today. I think there will be tears (me) she did tell me last night she had broken her tummy bone so may need to go to hospital in the morning rather than school, so am hoping she goes in willingly!

Did your oncologist give you different meds at all Leslie to make you more comfortable before being discussed at the Friday meeting? I hope you are feeling better as a result. Good luck with the pip, sounds like you may need it...