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

Ooh I have a weird belly button too! When they did my stoma they cut through my belly button so mines now sort of cut in half

Do you think there’s mileage in a Marvel film where instead of having super powers the main characters all have weird belly buttons

(*note I actually believe we have real superpowers too)

The Cancer Battling Bizarrely Belly Buttoned Badasses!

They could all wear crocheted capes.

You’re welcome Marvel.

Ooh dulce stop showing off! 2 belly buttons is just greedy
Mine was sawn in half too during my op and the scar above it is really wonky. My tummy is quite misshapen now, especially as I already had a Caesarian scar there too
Can I join the CBBBBB brigade too please

Glad to hear you're home purple. Hope you're resting comfortably!

Have just realised I'm getting really run down - trying to go for runs in the morning and doing all the school runs and not sleeping and worrying about returning to work and decluttering the house etc etc. Not sure how to modify it all as have so much I want to do!!! Stupid cancer slowing me down...

addle I hope you can slow down a bit

noodles good luck with today's chemo

purple how are you today?

Waving to everyone

Good afternoon lacies I can't join your belly button club but I would like a crocheted cape and I have many superpowers! Mainly being able to hear a bottle of wine opened within the whole of a Yorkshire and knowing exactly when my kids are up to mischief!!
Good luck with all your blinking benefits forms I'm lucky enough to not be at stage where I need to complete them. I have heard that you need a friendly benefits person onside.
@addlebrained slow down. If you really feel you need to do housework check out the organised mum method this is my third week and I love it and have DH and kids on board!
Off to a cancer exercise class in an hour, did a couple of hours work from home this morning, had a naice lunch now a kip to get me through!
Have a good afternoon lacies and let's hear about those super powers!

DB wa sadly onlygiven 6-9 months to live back in April( now has mets in liver and lungs, despite radical surgery and chem) and had been coping reasonably well at that point...going out and seeing friends- I even managed to visit him in May with my ds and dd. Have been in contact via messenger as he doesn't do phone calls as has tinnitus
However I live 7 hrs away so not easy to just pop round to visit, but was planning to visit Ds at Uni next weekend which is only 45 mins from where dB lives and had hope we could visit
Also, My eldest dd has been abroad for a year and is home on holiday for a fortnight so is also coming up to see her dB at uni and is now devastated that she won't see her uncle again
DB has a daughter who has been visiting her dad regularly until a fortnight ago when he found he was really struggling with socialising and didn't want to see anyone
I totally empathise with my brother but I'm just not sure what to do...he's not replied to my messages, it's like he's withdrawing and as he lives on his own , I'm worried he's not getting the support he could from Hospice at home / Macmillan
He's my big brother and I'm desperately sad I'm probably not going to see him again

Enjoy your exercise class ranout :)

Stopyourhavering64 So sorry to hear about your brother. There is a thread for those supporting relatives with life-limiting illnesses here. I think you might find it more useful than this one - we all have cancer so the focus is very much on our own treatments and experiences so probably not appropriate for you.

Sorry I cross-posted with you Stop that sounds incredibly difficult and I have no idea what to suggest. Hopefully someone on the thread TQ linked to might have had a similar experience and be able to advise you

Thanks ranout - that does look good! I'll definitely try that although my current problem is volume of decluttering and throwing/giving away stuff in storage and sorting paperwork (too much for anyone to sort out in just a couple of days!) since we downsized.

It's really a combo of bad sleep and that - DS2 woke up at 1am last night and took ages to sleep. He wanted the light on and I can't sleep with it on so have had another awful nights sleep. Meant to go to a party tonight (first one in months! And we hardly know anyone here) and I think we may have to cancel as I'm so knackered! Really didn't want to miss out on 'normal' fun stuff but there's only so much you can do.

Hope everyone else is doing ok - my superpower today will be getting everything done by lunchtime and then having a nap!!! (I hope)

I think weirdo sounds good,

I was always bizarrely fascinated with the toenail news!

addle party does sound a bit ambitious after all of that, but if you manage to get a nap at lunch time then maybe you’ll surprise yourself and feel great.

I’ve got clinic this morning ahead of Tuesday’s chemo and it’s the first time in hospital since the big news about my lungs. Am really worried they will want to go into more detail and tell me stuff I’m not ready to hear. I am thinking of saying that I don’t want to talk about the new diagnosis and just want to focus on the next few rounds of chemo, then getting cleared for that and getting out of the room ASAP, but it seems a bit pushy. Has anyone taken that kind of approach?

Morning!

Just checking in to say hello. Chemo yesterday was fine, my friend joined me for a couple of hours of gossip in the middle of it which was great. I am no longer on the strong nausea meds, but did go quite queasy again mid way through, so was given a tablet to stop that. Feeling ok this am & long may that last!

Good luck with the declutter addled I don't envy you that. Sounds like you would be better off going back to bed today (& the party if feeling ok after that, have some fun) save the declutter jobs for when you can get some willing volunteers/help. Can you galvanise anyone to do a car boot sale on your behalf yo get rid of stuff? Or eBay higher ticket items? I moved at the beginning of May (bigger house in room sizes, but converted loft, so not much storage) I was just in the process of organising my stuff, but then got diagnosed in June, so although some rooms (downstairs) are pretty much as they should be, others are not as organised as I would like. I have piles of (mainly kids) stuff I intend to eBay. Now the kids are not on summer holidays I shall do that when I feel reasonable, but am not going to overdo it. I want it gone by Christmas though, before inevitably more stuff comes in! Plus would like to decorate a few more rooms too, just painting required, but need to pick the right moment.

Glad you are back at home purple how are you feeling now?

I hope everyone is feeling as well as possible today...

namechange sorry cross post (takes me a while to type!)
If you do not want to talk about the extra diagnosis yet and just focus on the current chemo, I would just tell them as you go in that you are not sure you are ready to hear the full facts just yet. They should understand. I am sure that this will not be the first time they have someone wanting to deal with their illness/diagnosis one step at a time as I am sure the info feels more manageable in bite sized chunks.
Not the same, but I have only looked at each stage of treatment whilst I am doing it. I have not really thought about my op & radiation therapy yet, just dealing with current chemo & any side effects is enough.
Good luck today.

Good morning lovely lacies

addle I hope you get a decent nap and that you're able to go to the party. Are today's tasks urgent? I'd do the bare minimum and then rest as much as possible. Having fun is way more important - and good for your health too! :)

noodles I'm glad chemo went OK. I hope you carry on feeling OK today

iVampire sorry, my toenail is quite boring now, thank goodness

Namechange good luck at the clinic. Like noodles says, I think you could just say you're not ready to hear the details yet. I'm not sure how your clinic works but mine has a nurse as well as the consultant so I'd maybe try and tell her if possible, then she would tell the doctor. I'm sure they will understand

Still thinking of you planned if you're reading. I hope you've been able to spend lots of time with your family and that you are comfortable

Happy Friday everyone

Thank you Noodles and Leslie nice to know I’m not being totally ridiculous (just my usual level of ridiculous). Sometimes I have a nurse there but at the same time so I can’t brief her in advance! I have a better relationship with oncologist anyway so I’ll say something directly. Right now I just don’t want to go, but I need to have chemo on Tues so I need to toughen up!

Good morning everyone

Hope your looking forward to the weekend?

@Namechangeforthiscancershit I totally get not wanting to know everything. I'm with@noodles44 I can't think about surgery yet just getting through what's the process for now.

I think what's just come to my mind is that I actually have a choice in my treatment. When I was first diagnosed I was just chop my boob off and get rid, then you get bombarded (in a good way) with info about chemo, surgery, radiotherapy and I've just done as I'm told. However, I'm currently researching docetaxel as I think after my mri next week if they want me to have 4 more chemos they will want me to have it and I thought I already had but I haven't and I don't think I want it! Long story short, they didn't think the chemo would shrink my tumour, so if it has I think I want to stay in the chemo I'm on. I've got a good standard of chemo life at the moment and I think that is worth having compared to the more I read and talk to people about Docetaxel.
Lacies have any of you refused a certain chemo or other medication?
Apart from that little rant off me today. I hope everyone is as ok as they can be.

Thanks everyone, I have absolutely no energy so I'm just slobbing about at the minute. I'm hoping it's just low iron levels and that I'll pick up a bit in a few days

Addle I hope you manage to get a nap and go to the party tonight

Namechange if you don't feel up to hearing about things just yet then let them know, you just concentrate on one thing at a time

Noodles glad your not feeling too bad after chemo. Long may it continue!

How are you feeling Leslie? I hope the lungs and belly button are behaving themselves

purple slobbing about sounds like just what you need I hope your energy levels pick up a bit soon

ranout I tend to just do what my oncologist says as he's the expert. But I'm sure they'll be happy to discuss the different options and pros and cons so you can decide what's best for you

Namechange sending you an encouraging hand squeeze

Sorry purple I forgot to say my belly button and lungs are both improving thanks :) I've got a follow up with my GP on Monday as she wanted to review how I'm doing with the fentanyl patches so if I still have the cough then I can ask her to have a listen!

How are you getting on with the patches? Do you think they're helping more than the morphine or are you having them both? I really hope they're making a difference and you're getting some relief from them

Well, I don't have any pain so either they're working or I just don't have any pain at the moment it still seems weird to be on painkillers all the time when I only get the flare ups sometimes. But they keep talking about having a baseline level and stuff. I guess they know what they're doing :) I prefer the patches as they won't be affected by me vomiting when my adhesions flare up so then hopefully I can avoid a syringe driver, which I absolutely hate. I was imagining they'd be huge, for some reason, but they're only tiny. About 1cm square. They last for 72 hours so I was a bit worried about them falling off but the first one lasted fine through showers etc. I can go swimming with them, but not in a hot jacuzzi or sauna. And I mustn't lose them because they might stick to someone else and kill them

I don't like to at myself in the mirror but I have now checked my belly button in the interests of research and you lot . Despite a huge vertical scar from boobs to pubes the surgeon very kindly did a swerve when it came to the bb and I am, therefore, intact in that region .

iVampire my big toenails and two smaller ones are gross. Black, yellow, misshapen, knobbly and most unattractive. They have, however, stopped weeping and hurting so they are much less troublesome .

Leslie how's the cold? I hope you're feeling better. Re the patches... glad they're Ok and are giving you more personal freedom.. although slightly alarmed at the effects if they should stick to someone else.

Namechange Hope you're OK. How did the clinic go this am? I hope you're not too stressed?

Purple slobbing is good. I slob every day.

My consultant appt is 10.45 on Monday. I am alternating between calm terrified acceptance and panicky terrified acceptance. I have coped well so far though so I'm determined to do the same again. Pass the gin....

😳 Leslie that’s some hard core patches you’ve got going on there!!! 😂

Just popping in to say ‘hi’ to all... sorry I’m not very good at posting - I read every day and keep up with what’s going on...

I am another one with a weird belly button - some years ago I had a series of laparotomies for gynae issues ... by the third or forth time they opened me up I had so much scar tissue around my belly button they had to pretty much cut it out, along with the scarring to close me back up again! So I have a B.B. remnant, and lots of scarring.... good to know now that that puts me in such good company of other keepers of weird and missing belly buttons 😁😂

Have just had chemo number 5 today - enjoying the last few hours of relative normality before I get knocked out for a few days... the worst thing is the rate changes - I end up living on crunchy nut corn flakes and rice pudding for a few days... it’s pretty grim, and probably my worst thing about this chemo!!

So... I’m going to a breast cancer care younger women together event in Newcastle in a couple of weeks time... has anyone ever been to one of these types of events (or going to this one?!)? I’m kind of looking forward to it - and also a bit apprehensive!! Like Noodles I have not been giving too much headspace to aspects of the disease beyond the bit I’m coping with right now, and I imagine there will be people there at all points in their cancer ‘journey’....

Love to all... mush dash and get some laundry put away and one last decent meal made before chemo hits... Hope everyone is getting at least a little autumn sunshine this week and weekend ☀️🍂