CANCER SUPPORT THREAD 65 - for anyone with cancer or waiting for cancer tests (pets welcome!)

[WhatWouldLeslieKnopeDo]

Good morning everyone,

Welcome to the new thread, and the club that nobody wants to join. Our previous thread is here.

Anyone with any type of cancer is welcome. And we will hold your hand if you're waiting to find out whether or not you have cancer at all.

If you've got a loved one with cancer then you can get support here.

Please feel free to reintroduce yourself so we don't all have to remember from the previous thread!

Good morning everyone!!

and all round on me today!

It’s one year since diagnosis (provisional, and my first bone marrow aspiration, and the start of chemo). 50 weeks since confirmed diagnosis and switch to targeted cytotoxic drug. And I’m still here!

The side effects are now a list of petty gripes, I’m always nervous before each round of testing (this is an incurable cancer, so that’ll be happening for life) but I’ve responded really well so far. So fingers crossed for many (happy) returns of this day

for iVampire

My cancerversary was Sept 1st and I got “upgraded” to incurable on Aug 31st so was a strange day but I was determined to celebrate anyway because a) one year on I am still here b) I had managed so many bloody treatments and surgeries and all sorts and c) actually I had carried on living and enjoying stuff and occasionally finding something to laugh at so it hadn’t been the terrible year I had expected.

What are your plans today to mark the milestone?

I’’be started the day by sending an email of appreciation to my specialist nurse (and the —lack of— provision of such nurses for some was on BBC Breakfast this morning, so I’m glad I have one and an efficient/effective one at that)

Half marathon tomorrow!

Ranout is the trip away something you need to book or do you just turn up? Could you decide just before you need to go and then it could be a surprise for your ds if you do?
It all depends on how you are feeling, unless it was a super lazy holiday when I could just laze around all day I wouldn't be up to it. But only you know how your feeling

If you do go definitely take a thermometer and its worth having a quick check to see where the nearest walk-in centre is if you do have any problems

The amount of hours I've spent on candy crush when I can't sleep! I keep panicking I'm going to run out of levels

My bum is still numb Noodles and it seems to be spreading to the top of my thigh. It's not nice but I'm glad I don't have it in my hands (yet) It's miserable outside here so I hope you manage to snuggle up and get some sleep while your DCs are out

Well done on the exercise Leslie! I've heard yoga is good (and easy) so I might look into starting that

It's my cancerversary this month sometime too. Although I can't remember the exact date

Morning again everyone. It's my DS's party today so I'm making turtle ninja cookies with edible eyes at the moment!
@purpleunicorns it was just a get away and I know I'll not have a rest as much as my DH says I will. It's also my dad's 70th at the end of the week and I really want to go to that (about 100 miles away) so I think the best option is to aim for his birthday.
@purpleunicorns I really hope the numbness is beginning to ease, it must be horrid.
@iVampire You are totally inspiring, I've asked about exercise with the nurses and they've said yes do it, but can't really tell me what with the picc line. My gym wasn't sure either. I've been to a cancer exercise class which was good for stretching and breathing. It's hard as I know exercise will help with there's not much out there to tell you what, when and how! Good luck with your half marathon tomorrow.
Waves to everyone else.

Fuzzy yay for last chemo! :)

noodles I hope you managed to get back to sleep for a bit.

iVampire happy cancerversary!

purple yoga is nice :) I reviewed a book about anti cancer lifestyle and supposedly tai chi is the best exercise. I tried it, but I absolutely hated it it's gentler than yoga, or can be anyway, so might be worth a try too. I hope your bum feeling returns soon.

Have a lovely Saturday everyone.

ranout enjoy the party

keepcalm

You don’t sound like a wanker at all. It’s something to be proud of that you’ve built a successful business employing that many people.

I think I’d wanted to have a change work wise for a long time and the cancer diagnosis was just the thing that gave me the last push.

ranout I struggled to get a lot of info about exercise and the picc too. I think it’s all to do with not getting your heart rate crazy high, so I do yoga, kettle bells (but lower weights and less intense than pre-cancer me!), short and super slow runs, planks (when picc not making my arm hurt), wall balls, that kind of thing and they seem happy with it. I wouldn’t feel great doing anything that I know is (for me) loads of cardio. So something like spin I wouldn’t do but I hate spin anyway so...

It’s easy for me to remember the exact date, as last year it was Friday 13th!

iVampire wow what are the chances!

Irony of ironies. Went out for lunch with husband and step-son and came back to the standard letter/pack from the NHS inviting me to my first mammogram....started the "if only" thinking again (i.e - if only letter had come 6 months ago). I guess there's no point having it now! I had an MRI this week. I'll ask at the hospital when I go in to have bloods done on Monday.

Hi all! Can I ask if anyone here has a partner with mental health problems at all? I am really struggling with DH. He is having a low point at the moment and this is nothing unusual (now and again) but I am not sleeping, and am exhausted, and he is totally unsympathetic and even took himself off for a rest just now when I was about to go myself!
It's all getting too much! I can handle the kids and my own problems but if get no emotional support from DH AND I have to support him too, then I am just worn out
Today I got up early with the kids and took them to swimming and then football, and he came to the latter and was like a black cloud and no company at all. I am about to keel over frankly, but can't say anything else as I have already explained everything already! Please let me know if anyone is in a similar situation - that would make me feel less alone and at the very least! Depression is just so selfish and frustrating

PS am really sorry to hijack and whinge I just can't tell family as they will get angry with him and that's not helpful...

@addlebrained didn't want to read and not answer. My DH doesn't have MH issues as such but has found everything very difficult and is prone to huffing and not being able to show much compassion.
Are you getting any help from other relatives and friends? Can anyone take the DCs so you can tell your DH that he needs to man up? I had to spell out what I needed from mine. He also said he knew he wasn't coping but was so used to me doing everything he didn't know where to start. Is he getting any help from anyone, does he have people to talk to?
Sorry these are all probably things you've already gone over lots.
Hope you've managed to get some rest

and addle sorry, I've no useful experience, but it sounds exhausting. Hopefully someone will be along with some decent advice soon.

How old are your children? Sorry, I know you've said before but I can't remember can you at least rest on the sofa even if you can't go to bed for a lie down?

Maybe when you're both in a slightly better frame of mind you could talk to him again. You can't do everything. You'll run yourself into the ground

Mrstraveller excellent timing! I hope you had a nice lunch.

Namechange I'm very impressed with your exercise :)

I've just done ten minutes on my exercise bike. I was tempted to carry on, but I don't want to overdo it and have another setback. My breathing is much better today. I'm trying salt therapy after reading about it on a Mumsnet thread so it might be that or maybe jut a coincidence. We shall see.

Thanks Leslie and ranout - yes even before I was ill (when I was so anaemic I couldn't function properly) it was the same. We have gone over it time and time again. He just doesn't understand (or doesn't want to) and we have no family nearby.

We have moved here a few months ago and my old and only friend here (I have a few more now but don't know them well!) has been amazing, helping with the boys when I was rushed in for an op, and then came to my chemo with me - she is now full time studying herself etc etc. It's a really frustrating situation!

I can't magic up support and my main worry is getting low myself and having trouble returning to work/affecting the kids (8 and 4) and then affecting my ability to keep up my body's defended against the cancer (if that's even a thing )

Anyway, it is what it is! Thanks for the support - that's really all I needed and I hope when I'm less I can support you all too!!!

Addled that sounds exhausting. I don't really have advice as have no DH as we are separated, but I hate having to deal with him as he is very 'me, me, me' all the time. He has a lot of issues which is why I left (alcoholic & anger issues which were well hidden at the start of our relationship and came out much more after our 2nd child was born)
He doesn't have the kids at all at the moment, so I am as organised as possible with friends etc taking them, plus my Mum & Dad have come up & stayed each chemo for a week or so which has been a godsend. Are you able to do this at all & farm out a few jobs to friends and family? You need to prioritise your rest somehow to help get yourself as fit as possible. I hope you manage to talk to him & work something out. It must be very frustrating and I totally understand what you mean by the black cloud companion too. Good luck & whinge away if needed, he should be doing more for you.

Lesley well done, I shall go on my cross trainer this week now, I am shamed! Prob once the worst effects of chemo wear off

ranout I hope the party was a massive success. That said, how could it not be with ninja turtle biscuits. Sounds fab

Well, I managed no further sleep this am, but took the kids to a friends and stayed until after lunch. I tried to nap again this aft, but got into my first Miss Fisher episode instead. The kids are still not back, due any time soon as staying for tea too, so it will be earlyish nights all round. My Mum & Dad have been encouraged to go out for a nice meal as I don't fancy food and forgot to get anything out of the freezer earlier, so a quiet night ahead with Strictly & bed for me...

@addlebrained can you speak to Macmillan at all? They might have some advice

Sorry, cross posted Addled - that sounds hard with not much immediate support. How about school friends? Can you collar the parents and ask about play dates with offers to return the favour when you are fitter? I sort of did this with a few of my youngest daughters friends from preschool. I had theirs before my chemo & then they took her for a sleepover during and a day out to a farm attraction nearby. I didn't know them that well (but recognised them in the playground from their older children in the same year as my eldest) they have been great and if the boot was on the other foot, I would not mind at all if I was asked. Clubs etc are an option for a bit of a break, but probably not long enough for you to get a proper sleep or rest whilst they are there. Good luck X

addled... I am also separated from my (ex) black cloud, but I do sympathise... it’s exhausting.

noodles I think I finally got to sleep this morning about the same time you were getting up - about 3am 😂 Just heading back to bed now after a day out doing Saturday activities with the kid - I’m lucky to have an amazing partner around to drive me and her about! I do know how lucky I am. Thinking about surgery I have to pop back to the chemo unit next week for a blood transfusion - I’m a bit anaemic - so I’m meeting my BCN then to chat about surgery/recon options which I m going in circles with at the moment!!

Waves to everyone else - you are all amazing in one way or another - I get quite emotional keeping up with the thread, so sorry I’m not better at contributing... 😔

This round of chemo is really kicking my arse. I'm sleeping so much of the time and dizzy a lot of the time. Going to contact the gp to see if they can get an ot referral for handrails in the bathroom and a perching stool in the kitchen as I keep getting really hot and then dizzy and end up sitting on the floor.

Only lost 1 pound this week at sw but it's better than a gain. I really wanted to be able to go swimming but I'm hardly leaving my bed let alone anything adventurous.

Addle if you speak to Macmillan they may be able to put your DH in touch with support groups which may help him. Is it worth drawing up some sort of rota for having the kids/doing housework so you both get a break? My DH is great in every way other than doing any sort of housework. He'll do it if I ask but I get sick of constantly having to ask. Also give the kids little jobs to do, it makes them feel useful

Noodles if you haven't slept today then fingers crossed you'll get a decent nights sleep tonight

Fuzzy don't worry about keeping up, just let us know how you're getting on. I'm glad you have a decent partner, I just wish everyone on here did

Pandora I get like that quite often, luckily it's not all the time though. I don't even have any useful advice that could make you better but you're not alone and I know how awful it is. Well done on the weight loss! You're amazing keeping up doing SW while having chemo!

All the best for tomorrow "iVampire".

Thanks for the ideas purple, keepcalm and noodles I will see if I can speak to Macmillan and ask re play dates for the boys - I never like being in debt but this is slightly different (and wasn't planning on all my 'new' mum friends knowing about the evil cancer, but I suppose I'll have to just suck it up if I want to stay sane!)

Thanks fuzzy - am glad you have good partner support now despite your past experience. It is priceless!

Good luck ivampire

pandora I think that weight loss during chemo is impressive! I gained despite feeling like (most of the time) I wasn't eating much at all! I hope you feel less rough soon

I never like being in debt but this is slightly different

I totally get what you mean, but it really isn’t like that in this situation. You definitely need to be able to rest. It’s so important. What is the area you live in like? Are people generally quite helpful and supportive?