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

Hi everyone I haven't been on for a while but have tried to keep up with all the posts. I am feeling very fortunate that I didn't need chemo for my previous diagnosis, hats off to you lacies. My MIL spent 10 years going to 3 a week dialysis sessions, at 3-4 hours a time which seemed pretty gruelling - but without the head fuck of keeping cancer at bay... anyway I'm rambling now. I have a question re long haul flights and Tamoxifen; do any of you have any tips or experience? Thx

ranout I felt exactly the same at the same point in treatment. My kids had gone for a holiday to my parents, I was home alone and my hair was coming out in clumps. I definitely felt quite low, lonely and very upset and the end of everything felt a long way off. My turning point was shaving my head, possibly as I had actually taken a bit of control of the situation. I also know how you feel about feeling fortunate it is treatable and we are counting off our chemo rounds. That has hit me more now that despite the side effects I hopefully only have to cope with them a further 3 times. I really feel for the people on here that have to have ongoing chemo.

Glad the EC is ok for you. That is the one that had me constantly nauseous. My radiologist consultant predicted I would breeze through the 1st couple, but said it was cumulative, which wasn't the case for me, I was awful from day 1! So I hope you continue to be good going forwards, perhaps the fasting is the key as you are doing docetaxel too. Which is what I am on now with herceptin and am getting the bone & joint pain with it.

That is positive that your lump is softer. I had an ultrasound of mine after 2 chemo rounds and it had shrunk very slightly & it was only 4 days after my 2nd round when they did it. They continued with EC for one more as it had shrunk it even minimally. Had it not done, they would have moved to the docetaxel & herceptin one round quicker.

It is ok to wobble though and hopefully if you go down the route of more chemo, hopefully your side effects will continue to be minimal.
If they do start ganging up on you, you'll be ok. There are lots of drugs they can give to help, you just need to contact your chemo ward for advice.

The LGFB courses are great, also I did Pilates before chemo at my local cancer centre. I was either too nauseous after chemo to make a class & then a few were not on due to school holidays, but I would recommend Pilates, I am looking forward to doing that again & if I am in time after my consultant appt will attempt one on Monday. My appt is 10:40am and the class is at 11am so will be cutting it fine if everything is running on time...

Hi to everyone, have a great weekend. I am making the most of feeling good and off to see a friend on her house boat for a night with the kids. There is much excitement in the noodle household :)

Thank you lacies I've given myself a good shake, eyed up some new shoes which I'll get DH to order and had a nap!
Have a lovely weekend, and thank goodness for the sanity you all bring.

Enjoy the houseboat noodles that sounds fantastic

As purple will tell you ranout I'm a bit shoe obsessed so I fully support that purchase

I've just ordered myself a Joules handbag. I think it'll outlast me it bloody better do at that price anyway!

Must step away from the internet shopping now...

purple I hope you feel better soon. If not, you know what I'm going to suggest you might need antibiotics in case you've got a bit of an infection

Waving to everyone. I've had my chemo pump removed so I'm feeling freeeeeeee.

Waving to everyone. I've had my chemo pump removed so I'm feeling freeeeeeee

Best feeling ever!

Can everyone stop talking about shoe purchases without putting up links. It’s very unreasonable. Thank you.

Back in A&E I'm already on 2 lots of antibiotics and my temperature keeps spiking so they told me to come straight through. I feel absolutely awful

Ooh I love handbags Leslie, glad you're treating yourself

Oh bugger purple I hope you feel much better soon you're really going through it at the moment!

Sorry Namechange these are my latest.

I'm also eyeing up some leopard print boots but I'm not really sure what I'd wear them with...

@purpleunicorns that really is rubbish. Hope they get you sorted out soon.
@WhatWouldLeslieKnopeDo I love both pairs. This is what I'm eyeing up www.fitflop.com/uk/en/shop/womens-new-arrivals-view-all-uk/serene-deco-patent-mules-p-O41-617 not sure if that's how to ljnk?!
I also love handbags and be on the look out for a new one of those but I also fancy a teddy coat! Think I really ought to do a bit of work this month to cover the purchasing!

Oooooh sparkly!

What type of handbag are you looking for?

Those teddy coats look very cosy. Practically a medical necessity really.

I've ordered this Joules one. I've been using a rucksack because my back and abdominal muscles are shot from all the surgery. But it just feels so cumbersome. I'm hoping a cross-body strap will be a good compromise... and I'll just have to resist overfilling it!

I have Next unlimited so apparently it's going to arrive tomorrow.

Oh no purple I’m sorry to hear you’re in again. You must be really fed up. to you and hoping they get you sorted very very soon

ranout those are lovely and sparkly! And I love those leopard print boots leslie! They would go with jeans or skirts!
I just bought a new iPhone

Purple so sorry to hear you're back in again. I hope your temperature settles down soon.

I finally bought a crochet (knitting) bag today so instead of Sainsbury's poly bags littered all over the floor I am hoping to consolidate them all tomorrow. This is exciting news - honestly.

ON the subject of spending I am firmly in the "what's the point" camp, which isn't really very healthy I think. Maybe I need to go out and splurge on something wicked and extravagant...

I think you win best cancer splurge addle. Which colour did you choose?

At least we lacies seem to be single-handedly keeping the economy afloat!

purple I hope you get some sleep without too many nightly obs

I've done some tidying today and now I'm worn out. Just snuggling down in my jumbo pillow nest. Goodnight all.

Cross-posted TQ yay for your new knitting/crochet bag! What's it like? I find mine very handy.

I swing wildly between the two extremes. But I'd recommend the spending. In moderation. Ish. We can't take it with us, so might as well enjoy it while we can! Cancer is so shit that a few treats are needed to lighten the load :)

Hey purple I hope you’re feeling a little better today - thinking of you

Leslie I think (!) I got the grey one - for once I was not paying attention (imagine that, after chemo!! ) but I just wanted one of the 6s’s before they disappear! Also my phone has been behaving oddly lately but not nearly enough to justify such extravagance ...

Also thinking of you planned (every time I read this thread) and hoping you are getting lots of lovely time with your family

Hungry now... can’t decide whether it’s worth taking the kids out for brekkie (and enduring the fighting) whilst DH languishes in bed with a hangover (tbf is his first night out in ages!!) - fighting at home or in a restaurant ... hmmm I can’t decide ... but pancakes are beckoning (without accompanying washing up)!

to all recovering from chemo sessions and apologies if I have made you feel a bit (sick not jealous!) with the food talk

Pancakes pancakes pancakes! Do it!

Sorry, I’m probably more annoying about your kids if someone mentions pancakes!

Loving all the shoe purchases/consideration and I actually think a new phone is a great plan. I spent about 20 hours a day on mine at the moment, it’s such a lifeline when you feel crap, and when the battery starts to go it’s so annoying.

I agree namechange it's hard to imagine how people coped with all this cancer bollocks without mobile phones!

And I'm also voting for pancakes addle! They might fight less in public, especially if distracted by sugary food? plus no washing up. Excellent. And you can pretend you are doing it all to be considerate to MrAddle's delicate state so you might get brownie points too. Win win win

I slept until 4am which is pretty good for a steroid night. Then I listened to my audiobook and knitted rather than tossing and turning or going on my iPad.

Although I have since ordered some more shoes... I send about 90% of them back because my feet seem to be awkwardly shaped. Or maybe everyone has the same problem and shoe designers are just rubbish at making shoes fit human feet

I do think my shopping has got a bit out of control. It's much easier than facing up to my big, serious feelings I have done my mindfulness meditation this morning and that has helped a bit. I used to see a counsellor but it didn't really work for me. Maybe I need to find a different one before I plough through my entire life savings :)

I'm wittering away. Sorry!

I hope everyone managed a good night's sleep.

Thinking especially of planned and purple

Good morning ladies hope you had as good nights sleep as you can.
@addlebrained go for the pancakes, interestingly I'm not sure how everyone else feels but I'm definitely not off food!
I'm loving lots of you craft. I'm booked on a crochet course next Saturday just 6 of us on it so I should come away being able to do something!
Bit of an odd night last night felt shattered so early night then v&d between 10 and 4.30am think it was a bit of a wake up call to me and DH that I'm not invinsible! Anyway brekkie eaten, littlest gone for his first footy session and I'm lurking in bed with another cuppa and Gilmore girls. I'm eyeing up some rather nice wine glasses at Anthropologie (on sale and I will fancy wine again!)
Waves to all.

So sorry to read you’re in hospital Purple Hopefully they’ll get that temperature down and you’ll feel lots better.

Have enjoyed looking at all the bags and shoes!
I really like the leopard boots Leslie and would probably wear either brown (BTW H&M have a brown teddy coat v similar to the Maxmara one) or black head to toe. Or a mix of the two - Black skinnies, black skinny rib poloneck and my camel coat is the vision I have in my head.

Love the leather Joules bag too! I looked at it thinking how practical that would be for hospital visits for keeping letters, meds and stoma bag paraphernalia in. I go with one of my impractical little hand bags then never have the right things with me at appointments. I’m way too disorganised for this cancer lark!

Still deliberating on the LK Bennett coat. I shall try it on in store at some point then decide. I should probably tell you that coats are my weakness and I buy several every year. I probably have forty or fifty coats and jackets (I blame Zara for the jacket addiction!).

Hope you all have a nice Sunday x x

Ok we had French toast with compote and Creme fraiche! And a drizzle of syrup  - boys have gone mental on a sugar high! 

Thanks all for making me feel justified in my expensive purchase!
Glad you got some sleep Leslie - I’m also considering whether or not I should have some counselling. Wondering what the cancer centre would manage if I asked them to arrange some for me - does anyone know?

Like the sound of that outfit Aimless - I love a bit of black with some exciting shoes/boots!

Gonna be blunt here. I've got the shits and I'm feeling so incredibly sorry for myself. My kids are fighting, OH keeps shouting which makes my head rattle and want to vomit,

I've got a bag for my current craft project which is at the moment the sue page Tudor lady cross stitch. The bag is just a canvas one from Primark with a tattoo style picture on it with swallows and 'Mon amore' in banners.

I've never really been into shopping but that's because I just get depressed that nothing fits me. So I buy for the kids or my crafting.

Aimless I'm disorganised as well. I've made a really conscious effort to be sorted now and all my cancer shit is in my "go bag" and all my letters are in a file in my go bag.

namechange I got my phone upgrade a couple of weeks ago. I went for a Samsung s8 and the battery is brilliant.

Pandora

Could you suggest OH takes the kids out? Being a mum of boys I can tell you that just getting them out of the house for an hour or so seems to take the edge off the need they have to shout and maraud around the house and at each other (Bike ride, ball at the park, long walk with the dog, a swim?)

ranout welcome to the dark side crochet is great. It's a great way to pass the time at hospital appointments. I hope you enjoy the course. And I hope you're feeling better after a bit of a rest

Aimlessly that sounds very stylish. I don't wear black (I'm an autumn and it makes me look gravely ill). To be honest I think I have quite a few outfits they'd go with. Just not sure I need them as such I have booked a style consultation day with my mum as a nice treat so I'm trying to resist any more purchases until after that. We will see how that goes... good luck trying on your coat. I'm intrigued by your coat/jacket collection - where do you keep them all?!

I had a good Fiorelli rucksack for a while that was quite practical for hospital appointments. I'll report back on the Joules one. Bags fill up so quickly now - stoma supplies, medications, emergency snacks...

addle definitely worth asking at the cancer centre as they very often have counsellors, and if not I'm sure they can point you in the right direction. I made the mistake of finding one myself just through the internet. She had no experience of cancer and kept treating me like a guinea pig breakfast sounds yummy.

Pandora I agree - can send them all out somewhere?! You need a break by the sound of it

I also have a go bag in case I am admitted to hospital. It has had quite a lot of use over the past couple of years! It always has knickers, pyjamas, toiletries, wet wipes etc.

Separately I have a small folder with my latest oncologist letter, my chemo record book, a list of my current medications and anything else like that that might be handy. I take that to all appointments and also if I have to go to A&E. I have several copies of my medication chart as they will often just stick that into a folder to save them having to copy it out.

Also if you have an iPhone (other phones might have it too, I don't know) then you can fill out the medical ID information so that in an emergency someone can access your basic medical details and emergency contact without needing to unlock your phone.