Cancer Support Thread 97: support for those diagnosed and going through treatment

[LiliJilliBobs]

Cancer support thread 97: support for those newly diagnosed and /or undergoing treatment…..
Thread 96 is pretty full - here’s a new one

Frigging war and peace that post wasn’t it 😂. I’m sorry, I have no off switch do I.

Hello ladies (not sure if we have any guys, but hello also).

I've had my surgery to boob. I'm home and have a drain in. District nurses will come to check it daily. I think they glossed over this as I didnt know and dont like looking at it! But otherwise all is well. Pain is really not bad at all.

Two poor ladies booked for afternoon surgery were cancelled after being consented. So I'm very grateful mine is done.

Will catch up on thread

The CT scan sounds unnecessarily stressful @cantbelieveIamhere I'm sorry it was like that. I've had a few now and I'm very glad they told me that when the gloop goes into the cannula it would feel as though I was wetting myself. Such a strange feeling. I hope the bone scan goes well today and the staff are more professional. I have my bone scan on Tuesday. Given that I'm 5 weeks into Chemo I wonder whether I should have had it weeks ago.

Hopefully, armed with the CT and bone scan results, your MDT will be able to decide the correct pathway and treatment for you next week. The waiting is absolutely nerve wracking.; I'm so sorry its taking so long for you. Keep talking; don't bottle up your feelings - journal or notebook is good, we are here for you and definitely rage against the nightmare of the toilet situation. Hopefully the waste pipe will go it's own journey from being full of crap to being clean and new and fully functioning quickly.

That is good news from Dog's Trust @ForestFlowerFairy. For what it's worth I think you are doing the right thing; both for you and for her. She needs someone who can devote themselves 100% to supporting her needs, training and developing her. You need to prioritise yourself and you can't give everything you would want to give to her at the moment.

Some parents are just better off not together. I'm glad both of your sets of parents eventually got there but I'm sorry that you both had to go through that. My parents are still together but appear to totally loathe each other. My sister and I fully expected them to split up when we both moved out but they've carried on in their own dysfunctional way ever since. I don't know how they have the energy to fight 24/7 to be honest. When it all got too much my sister and I would go to our Gran's house (so I know what you mean about your Nan @cannaecookrisotto ) She was our rock, our stable place. She died many years ago and I miss her still. In fact today it would have been her birthday. Happy birthday Gran!

Care home fees are brutal. My father in law was in a home for nine years (he died earlier this year) and DH and lovely SIL sold his house to pay the fees. There wasn't much left by the time he died but we didn't get to the "having to grapple with Social Services" stage fortunately. He was lucky that as a headteacher he had a fantastic DB pension, plus his state pension and benefits, which covered about 50% of the fees. He had dementia and lovely SIL tried having him live with her but she needed eyes in the back of her head as he'd just walk off; literally let himself out of the house at 3am and go. Plus she had to work to pay the bills. He needed somewhere secure with 24 hour support. It was weird actually, when he'd been at home or at SILs he'd been really agitated and wouldn't settle. When he moved into the home he just calmed down, settled, made friends and just seemed so much more at peace.

Another thought was - could you take your Nan out for a while? Get a wheelchair and go out for a walk perhaps? You'd be less likely to breath in the germs and bugs that way. iPad is great though!

Don't tell anyone but I quite like Chemo too. It is a nice and safe place and they bring tea and biscuits. What's not to love?

I think Richard has been saving those tasty roaches up for Christmas!

I do enjoy reading your posts! please don't stop

I'm glad surgery went well @FcukBreastCancer and I hope the drain isn't too difficult to live with. Best wishes for a swift recovery

@ForestFlowerFairy I am sorry to hear about your dog, but glad that dogs trust can take him back and maybe work some magic on him for another family.
We have a sprocker spaniel he is soooo needy and anxious but the most sweet and characterful dog we have had, Sadly he has seizures so we have to give him MCT oil which has worked amazingly for him as they were once a month and have been gone for three years until they came back just a month or two ago. I am sure they pick up on all the stress. Dogs melt your heart and as you say its hard when you have so much going on.

@FcukBreastCancer How good to get that over and done with, good luck with your recovery and good that you didnt get cancelled, how awful for those women waiting again. Were you in hospital long?

@Ventress a range cooker arriving sounds fantastic, not sure I would know how to use one but they look lovely and there is an air of just do it with all sorts of things at the moment.

I have had my bone scan, i left home at 10 am and came home 3.30pm a long day. The injection was at 11 and then 3 hour wait, so went to park and had picnic but then it started to rain so back to hospital. Hospitals are always too hot and stuffy for me and make me feel ill just being there. The scan is okay, the machine gets a bit close and they didnt tell me till afterwards that it adjusts to where you are so it wont squash you, but feels like it might. I have my breast lumps on my left side and so she had to wrap my hands up more carefully as I cant have my arm too close to the lumps.
Better than the mobile car park event.

@cannaecookrisotto thank you for all your lovely messages and I love the no wanky sparkly unicorn stuff you say it like I would, its not funny and if you cant say something useful .....off. I think everyone is enjoying your interesting downloads so you must continue.

Bless you all I am having a glass of wine tonight because I have realised that soon I wont be drinking wine at all. Now have to wait some more.

The portable toilet is better than peeing in a bucket can I just add, in case anyone needs to know. Poor plumber is in for a treat on saturday installing new waste pipe.

Did anyone else get given all their mcmillan stuff to read and then get told not to read it yet?

Evening all! My feet survived being touched by demons in the night praise ye lord. Not much to report, spent the day doing some work. Nicht fun but distracting!

@FcukBreastCancer Glad to hear you’re out of surgery and now in recovery phase! The drains sound shit, I think you can little bags online for them to sit in. Excellent to hear pain isn’t bad too, gives me hope. I might ramp it up a bit when I get there, get some extra fraudulent days in bed. I’ll buy a tiny bell for when I need assistance and cake.
Really pleased you’re on the other side - what’s next in your plan?
We do indeed have a fella in the gang! He’s called @DanFmDorking (I checked and he is a man! Can never be sure these days - how are you Dan, was it chemo today?)

@Ventress I hear you on the Nan bolt hole! Mine (my mums mum and dad but both sadly since died, we were very close. Dad’s mum is in care home) lived just around the corner so at a certain point I started voting with my feet and pretty much migrated there permanently. They lived in the same house all my life and when Nan died in 2018 my mum bought her sister out so she could keep the house with us and lives there now. It’s like the central fort of the family. Well and truly home for us all. One day I’ll be in there :) (I hope 👀).

Happy Birthday to Ventresses Gran! I’m very woo (don’t tell anyone though, to the outside world I’m a non-woo logical and scientific person), so I do think our loved ones stick around. Not in a godly way, I don’t believe in god. But I do believe that our consciousness carries on. “They” still don’t know what generates our consciousness or where it comes from. I like David Chalmers books on the subject and also Dr Peter Fenwick. Fenwick is my fave. So I could say I believe we go on but from a quantum physics perspective rather than in a bible way. I’m sure there’s science behind it but I’m still figuring it out. But then I think we’re not supposed to figure it out because some things are just meant to be a mystery. It started for me when I went to see a medium after my grandad passed away. I also knew the night before it was going to happen. He was 68 and in great shape. Would strap weights to his ankles and walk a mile a day. But I just knew. I couldn’t shake off the feeling I was going to lose him. And next day it happened. Massive sudden heart attack. I couldn’t see him in chapel, I didn’t want to. So I wrote him a letter and mum
put it in with him. The above mentioned Medium then told me some very personal details from this letter. Very specific. Names of made up games we played when I was little type specific…I just couldn’t explain it and it blew my mind. So that’s when I started looking for answers.

see I’m prattling on now. I blame the steroids!!!

Care home fees - we’ve calculated nans funds will be dry in about a year. But the care home have reassured us that they won’t kick her out. Dementia is such a terrible disease, im sorry about your FIL. My MILs husband has it too and he’s had a rapid decline recently. He’s had to go into a specialist home as he was getting a bit violent.

She has a wheelchair and we do pop her to the pub down the road for a lager or wine, she loves it! We’ve also snuck a bottle of sherry into her room. She has a little tipple each night 😂.

@cantbelieveIamhere
That’s a looooong day. It’s so much at the beginning isn’t it, feels like appointment after appointment. It does slow down and you get into the swing of things. I’m at the point now of Chemu once a week and that’s it. But at one point I felt like I had a season ticket to the local hospital. I agree about them being hot and stuffy. And they also bloody stink of wet cabbage for some reason!! Glad the scan was ok and not portacabin style too.

I’m with you on the Fuck off style, I had to do it to my poor mother this evening. She was moaning and being catty about something my dad’s wife put in the family WhatsApp, basically being too sensitive about it. It wasn’t even aimed at mum, it was a joke at my dad’s expense. Ridiculous really so I had to tell mum to go and moan about it elsewhere because I need unity and fuck off with drama. Not got headspace. She was like “ok sorry you’re right” 🤣🤣. 2 months ago she’d have put the phone down on me then sent me a 2900 word count essay via text informing me of the offence level I’d caused her.

A glass of wine sounds perfect and I think it’s well deserved 🍷. I actually drank a tiny glass of lager shandy on Tuesday night then shortly after developed like a sunburn rash on my face!! So quickly chugged a load of water and it did settle down. I don’t even like shandy but DH had one and it looked really refreshing. My Ghandis Ass mouth was drooling at the sight of it but I’ve learned my lesson.

Laughing at your plumber in for his waste pipe installation. I couldn’t pee in a bucket, I don’t have the squat strength so I’d be rolling around the floor covered in said pee.

Yes, I got given a little green folder with all kinds of leaflets and booklets. They didn’t tell me not to read it though. I got in the car and shoved it in the glove box, where it still lives to this day…
Did the nurse offer to refer you to Breast Cancer Now? I can’t recommend them enough. They call and ask about different support services. I signed up to the “Someone like Me” service, and they buddy you up with a volunteer who has a similar diagnosis but has come through the other end. So I have a lovely lady who calls me every fortnight (I set the frequency) who had triple negative, diagnosed at 28, big tumour, stage 3 and had 2 small children. She’s 47 now and living life. We just chat, she listens to my fears and it gives me a lot of comfort to listen to her story too. I can vent to someone for half an hour who understands. I thought I would hate it but it’s something I really look forward to now.

Have they been through the pathology with you yet of your biopsies? Or have you got a date for the results?

@ForestFlowerFairy
How are you lovely lady? Are you feeling any better (aka less shite) today? I want to get Nan some lovely plants for her room but I know nothing about them. I want something that is really earthy but not small, that doesn’t need watering every day but looks magnificent. Any recommendations?

@cannaecookrisotto Thank you - yep, it was Chemo on Thurs (16th) - I'm counting down as well - Chemp pump fitted / removal on Saturday - I reckon I'll be watching the Liverpool v Man U match with my next Sunday roast.

@FcukBreastCancer I hope your recovery goes smoothly

Hello all
So I am feeling more emotionally stable, have not cried in 24 hours!!
I have also decided I cant rehome our dog. We've had her 5 months, 4 of which I have been sick and I've got 8 days left of treatment...nurses believe 3 weeks of the radiotherapy side effects getting worse then I turn a corner, surely we can do another month of sickness and looking after her, and then....then we see how we are when I'm better, we don't have people staying every week and she's got a more stable home.
I will crate her when the cleaner comes as she's a bit nervous of her since the bite, and my husband is committed to playing and wearing her out every evening - I'll also see if our trainer could maybe come mid week to work directly with her as well as the evening session with my husband.

Physically, I'm the worse, throat has closed up so I couldn't eat anything yesterday, I can very slowly drink but it has to be room temperature so my food shakes are going into my feeding tube alongside all the painkillers now, still on cocodomal but I'm seeing the nurse today and will see if they can give me anything to actually stop the pain as opposed to just making me a little floaty because a little floaty for half hour isn't really doing it anymore.

@cannaecookrisotto I adore my house plants but I'm pretty terrible with them, I have an amazing house plant shop nearby and the lady who runs it is like a small wizard, I describe the location I want the plant and she finds me the right one. I have hanging plants in shade, some on bookshelves, others in full sun, bathroom plants and she always steers me on caring for them, she also posts, so I can confidently recommend you get in touch with Laura: https://houseplantsbylaura.co.uk/ ohh and she does these amazing book vases, I may have bought a few 🤦

More bad news, my poor dog had two fits last night, I was up all night with him, he was so anxious and stressed because we were out yesterday and his last fit was two weeks ago, so now we have to think about his quality of life.

I think we are going to have him put to sleep, at home so its not stressful for him. We are going to give him a few days of being spoiled, special walks and try not to spend the whole time crying about how much I will miss him and his delightful ways. I cant believe this is happening on top of bloody cancer, its too much to bear I am broken today.

@cantbelieveIamhere Heck - I'm sorry you have to go through this as well - sometime 'The Universe' is a big meanie - if you'll accept this from a stranger on t' internet - please take some time to look after yourself.

Oh no, I am so sorry @cantbelieveIamhere that truly is one of the worst things in the world, what unbelievably shitty timing.
Seconding @DanFmDorking - do take care of yourself, this is such a horrific time for you and your family

@DanFmDorking
I’m so chuffed for you 🤗. Most importantly, who will you be cheering on?? I’m a City fan but I’ll be cheering for your team regardless on Sunday in celebration solidarity for pump removal!

@ForestFlowerFairy
Glad to hear you’re feeling more emotionally stable and you’ve come to a decision re dog. I think just making up your mind brings peace doesn’t it. Sounds like you have a solid plan for working things through too, you’ve got this!

Sorry to hear you’re having some throat issues and pain, it must be completely shite for you. Absolutely push for stronger pain relief - there’s plenty of options out there, just be strong and don’t let them fob you off with crappy drugs. You want the good stuff like Tramadol 😂 . If they try and give you NSAIDS like Naproxen, I would ask for them to be given in combination with an opioid and also something to protect your stomach, like Omperazole/lansoprazole.
Laura sounds like a wizard indeed so I’ll get in touch :). What is your favourite plant? Do you have a special one that you love the most?

@cantbelieveIamhere
I am so so sorry to hear about your lovely dog. When their quality of life isn’t there, PTS is the last act of love we do for them. I’m sure his next few days of being spoiled will be filled with lots of tears but also lots of love, and he will feel that and take a lot of comfort from it.

Be very kind to yourself, our furry family are just that - family. On top of everything else going on, it’s just really really shit timing and I’m heart sorry for you, your lovely dog, and your family ❤️.

@Ventress
Just a note to say I’m thinking of you and hoping you’re having a nice chilled Friday evening and all is well in Fort Ventress xx

@FcukBreastCancer
How are you getting on today? How long do you have to keep the drains for? Are you being well looked after and resting as per doctors orders? I hope so! X

Not much news from me today, been a busy one. Got up, went to see Nan and was delighted to find her in the chair and in the lounge having a mingle with the other prisoners residents! She had some physio whilst I was there too and she stood up (using an aid and two physiotherapists) but I’ve not seen her stood up since pre-stroke so it was amazing. She’s going to play some bingo in the morning but she’s not a fan of nursing home bingo because apparently it’s too slow. Nan was one of those at Mecca Bingo with about 10 books, 18 pens and hands dabbing at the speed of light 😂.

I was on cocodomal, and they've upped me to oromorphe today and said I should take soluble paracetamol alongside, told me to check in Monday if it isn't helping over the weekend. I took 2.5ml last night and within 2 hours was struggling so had the paracetamol as well, just about got to sleep for a few hours but I've been up since 2.

I also have Gelclair for my throat - it helps a bit with the burning and swelling, and I balance that 3 times a day around brushing my teeth (usually morning, lunch, evening and middle of the night) and mouthwash when it gets all claggy.

I did have difflam but it burns so I don't use that now.

I've also got a nebuliser to help with the excess mucus and I'm getting less nose bleeds since using it. Apparently full fat milk is also good for the mucus so I've been having a bit of that, but the swallowing is hit and miss.

I've also got a laxative - although that was to offset the cocodomal and Chemo so I'll see how I go on the oromorphe before using more.

Other than the weekly chemo steroids I think that's it for meds!

In terms of house plants and my favourite, it's without a doubt my Bourganvillia, we dig up the kitchen floor when a window was put in and fibre glassed it, it now grows up around the window and across the kitchen ceiling.
But I also adore the aloccesia - though they need lots of water so may not be ideal for your Nan.
My monsteria has done amazing things in the bathroom, as has a stags head fern and they mainly just take the moisture from the room, I think I water them every couple of weeks.
I'm desperate for a moss wall for the bathroom but that will be one of those never never luxuries, though I am doing the Monzo 1p challenge so who knows, maybe doing that for 2/3 years will cover it!

I think I've got pictures! So this is the Bourganvillia and alocessia, as well as the oh so troublesome dog - eating rice after finding a dead mouse and having an upset tummy!

Will come back when on laptop to post more. I’m on bastard phone atm so please excuse typos.

@cantbelieveIamhere- I am so very sorry to read about dog. Have the vets considered a different treatment? My friend’s dog (Vizla) has epilepsy and she has diazepam as a suppository- they have to stick it in as soon as she starts fitting. It can take a couple of capsules before it kicks in but it is effective. I realise your dog is not epileptic but I wonder if this might be an option?

We had to have our gorgeous girl PTS in June. It is such a difficult and heartbreaking thing to do. Sending love and strength ❤️

Oh I'm a house plant collector. Although had a few losses this summer.

I'm doing ok. Yesterday I felt worse, maybe the drugs wore off. Woke with headache and nausea. Then had problems with the drain. I feel that once that's out, my proper recovery can begin.

Might try and wash hair / self today. Its very slick and I must stink

So I have got up today and thought I cant deal with my dog just yet, hes right as rain after a day and then you look at him and think no I just cant.
I have an appointment with my consultant on Tuesday so I guess this might be the plan, or ct results or something anyway and then I will think about what to do next.

Its all too much at once. Good news is the waste pipe is being fixed as I type this and am hoping for a proper toilet by this evening! Small mercies.

Good wishes to you all, havent read messages but i will do and am so glad that i have some people to talk to who are actually going through the same shit as it is helping me so much so thank you all.

@cantbelieveIamhere - I don't blame you. While your lovely boy is stable and you have so much else on your plate. I realise the diazepam I mentioned previously isn't a preventative, it certainly helps my friend's dog get through the seizure more comfortably.

Great that the waste pipe is going to be resolved this weekend.

The bone density scan sounds like it is an MRI. I'm glad it was better than the CT scan, but they should have explained how the machine was going to work in advance. I have mine on Tuesday. I'm not looking forward to it as I'm very claustrophobic.

Hope you are feeling a bit better today @FcukBreastCancer . My sister said the drains were the worst part of the process. She was given a little cross body bag to hold the drain bag in. Having a shower just makes you feel better all round. Hope you have a calm and pain free day today.

Oh shit @ForestFlowerFairy what you are going through sounds appalling. I am so sorry that you are having to experience that. Have the team said when the awful side effects will calm down? I think I'd be at the point where I'm putting neat vodka in my feeding tube! Your indoor plants look amazing.

Your dog is lovely, I can see why you are loathe to let her go. You are a wonderful owner, and I hope with the support of your trainer you will be able to regain that trust and continue with her progress.

@dancingwhilstfacingthemusic - Hope the removal goes well. Enjoy the match, and the roast, tomorrow!

I'm glad you survived the night demons @cannaecookrisotto You do know they wouldn't dare get you don't you? You have the army of those in the "club nobody wants to be in" sending protective vibes through the internet ether at all times.

It's lovely that your mum now has her mum's house. Does this make you landed gentry with a house which gets passed down through the generations?! You could be Dame Risotto

I will tell you a secret which I've told nobody because they would think I've lost what few marbles I have (and because this isn't the public internet, right?). I'm like you - very much science based, only accept peer reviewed evidence etc etc. I've never believed in ghosts or spirits or an afterlife but when I was in hospital my dog (who we lost in the summer) came during the night when I was having a good cry and feeling really low thinking I was going to die, and gave me a cuddle. It was so real and so comforting. I've ever had an experience like that before. Perhaps I won't ever have an experience like that again but it was lovely and I treasure it.

The range cooker is very not exciting: it's just a wider normal oven really. It's not like our kitchen is very big so I'm not sure why the previous owners went for a range, but as the kitchen was built around it we cant change it without changing everything else. And we can't afford to do that, so replacement range was the only option. We've gone from a gas hob/double electric oven to induction hob with 2 "proper" ovens plus a separate grill and a warming oven/slow cooker. We'll use it as a warming tray I think (I've always wanted one of those).

Thank you for asking about my chemo - all went well thank you. I'm now 6 of (hopefully) 12 so half way (milestone alert).

DS has just broken two pasta bowls (bloody ham fisted teenagers!) so, on top top all glasses DH has broken recently it's looking more and more like an IKEA trip is needed.

Wishing everyone a peaceful and pain free Saturday

My sister went to a Breast Cancer Now seminar yesterday and has shared lots of links to different charities/agencies that they were given. Sharing in case these are helpful to anyone.

@ForestFlowerFairy
Oramorph is good, 2.5ml is the minimum dose really. You could titrate it upwards between 2.5ml - 5ml and see if that helps along with the paracetamol (unless you’re very underweight) until Monday.

I bought a water flosser to help with the clag, I was brushing like a mad woman multiple times a day then my gums started bleeding. The water flosser is helping take that furry feeling away which helps loads.
The Difflam does burn! 🔥. I noticed that too.

Your house, plants and pooch all look amazing and thanks for sharing your favourite plants ❤️. It’s like a magical forest grotto and I want to live in a magical forest grotto as well!! It looks so relaxing!
I can definitely see where your Forest user name comes from. Your Dogs gorgeous as well, I don’t think I’ve ever seen eyes on a dog like that before!!

One of my cats eats the mice she catches the little grot bag but leaves just the ass and tail. Then I wait for the magpie to swoop in and clean up after her 🤢. She ran in the house last month with a live mouse. She had it on the lawn “playing” and it started to rain, so I knew she was going to run inside with the mouse. She beat me to the cat flap. Mouse escaped down a hole into the cellar and neither of us (me or cat) could find it. So I named it Mauve and made peace with the mouse winning its freedom.

@FcukBreastCancer
Headache and nausea sounds awful, is your temperature ok? Are you keeping an eye on it? Just look out for any signs of infection which I’m sure they’ve told you. Has somebody been to sort the drain? ❤️

@cantbelieveIamhere
Appointment with consultant sounds like it could be as you say, results and treatment plan! Even just results (I got my results the week before treatment plan) can start to help you get to grips with what’s happening. We’ll all be thinking of you and holding your hand, come back and let us know how you got on.

Hows Lovely Dog today? Are they still ok? Ventress has some good suggestions if you’ve not already tried them, must be worth a go and see if they help?

Glad to hear your waste pipe is fixed (must be done by now?), so you’ll have been able to use a normal toilet 🥳. The things we take for granted eh? I’d be lost without my loo. I’d have to go and live back with my mum until it was fixed!

@Ventress
The protective vibes are working as my feet have not been fiddled with! Ya’ll are fab.

Laughing at landed gentry and Dame Risotto 😂. It’s a 3 bed urban semi but it’s where our heart is. My Nan and Grandad exchanged on the day Nan went into labour with mum too. So she grew up there, then I did. Mums had an extension put on and modernised it a lot but I think N&G would approve.

I love that you shared your secret visit from your doggo! It’s such a wonderful thing and I do believe your lovely pooch came to comfort and reassure you. I had a similar experience after my grandad died too, it was like a very vivid dream where he came to me and gave me a cuddle and told me everything was ok and he’s never far away. I can still smell the way he smelt and felt in that dream and it was in 2007! I woke up the next day feeling very at peace too. It sounds batshit doesn’t it but it felt as real as I do now.

Halfway through chemo! 🥳. What’s next after chemo on your schedule?

Im sure IKEA do home delivery. I just can’t even cope with going into that shop!!

Thanks for sharing those links to charities and agencies too!

Hello all, I'm new here and joining the club no one wants to be part of. On Friday I was diagnosed with Accute Myeloid Leukaemia and tomorrow I go into hospital for about a month for tests, chemo and god know what else.

Last week I went for a fairly routine blood test (I don't feel ill or have any symptoms) then all hell broke loose and my life started to fall apart. We're absolutely reeling from the news. In the last two days me and DH have had to tell our children, families, friends and get me signed off from work. The shock is huge and so is the fear. Both my Dad and Grandpa died from AML - my Dad only had a few weeks left after he was diagnosed.

My Mum died in August and I was struggling with that even though it was expected (she was 94 and in very poor health) and now this. All our plans and hopes for the future have disappeared overnight.

Is there anyone else on here with leukaemia?

@PatsFishTank I'm very sorry to hear you have had this news. I'm not sure if any of our regulars in the past few months have AML. There is a lady Joy with NHL with her own thread (I think). Do you want me to share the link?

My headache and nausea was better yesterday.

Drain got twisted and kicked in night so has now bled and more painful. Argh. I so want it gone. Dh says that could be worse though as wound can break down. I must be patient. District nurses coming today.

I hope the shit pipe is fixed. I'm having trouble tagging people still.

Bloody autocorrect. My drain got kinked, I didnt kick it! (Tempting)

Temperature has been ok @cannaecookrisotto thanks for checking on me :)

Welcome and sorry to see you here @PatsFishTank I cannot imagine the stress of trying to go everything at onc.
I was diagnosed with head and neck cancer start of July, and whilst the main tumour was removed quickly, between all the scans, fertility preservation and RIG feeding tube I didn't start chemo or radiotherapy until September. It gave me time to put everything in place, which in the first few weeks brought a sense of calm and control at a time with very little control.

I have found it difficult but everyone on this group have been amazing at picking me up when I'm having a wobble - please do ask for any help and do not worry about what you need to say, often it's easier to say to strangers than loved ones.

@FcukBreastCancer the drain sounds horrific, I do hope the district nurse can sort today.

@cantbelieveIamhere what a relief of the toilet being sorted.
How is your dog doing? I think you're so right to wait and talk to the vets Tuesday. When we lost our shepherd at the end of last year the hardest part was knowing when was the right time.
In the end it was the day after news years, we have the most amazing vet who came to the house and it was peaceful, made worse as she has such an amazing day the day before at the beach but we knew deep down she was exhausted. Talk through all your options, don't rush and use whatever time you have to try and find peace.

@cannaecookrisotto not underweight, I'm 5ft and currently 57kg. I'm losing on average 1kg a week, but luckily have a bit of timber to lose before I look ill! I used to have a few issues with eating but had a good 10 years without a relapse so I'm trying to remain confident, eating is so important to me now, and this morning thanks to getting the pain under control I had some toast! I find the rough foods better for the mouth clag, soft foods are mush and taste of mush = mush squared and turns my stomach so much.
I am trying to take the lower doses where I can - having lost a cousin to opioid addiction I'm quite wary of the drugs. I'd like enough to be out of pain but not necessarily unaware of everything else.

In terms of me turning the corner, I've 7 more radiotherapy sessions. I should expect the side effects to worsen for 3 weeks after and then I start turning a corner, so just 1 month more of this crap....and then the scary bit, finding out if it worked. I'm trying not to think about it, especially as they gave a 3 month life expectancy without treatment. The idea of doing all this and it not working is something I simply can't think about -again, I definitely did the last couple of weeks when my Dad told me my cancer wasn't that bad and for some stupid reason trying to explain it to him forced me to look at it properly and had zero impact on him.

@Ventress I adore people staying in their homes, my husband's parents bought their house the week his sister was born and are still there almost 50 years later. There is something incredibly reassuring about a home being a home for life. I was bought up in the RAF, moved every 3 years and went to countless schools so now my husband and I have our house I suspect you'll have to prize me out of here in a box, hopefully in many many many years to come OR better still, bury me in the garden!

Hello @PatsFishTankI am sorry to read your diagnosis. I guess the most positive thing is that your AML has probably been caught early.

The shock and not knowing is so hard to deal with. I am 6 weeks post diagnosis and I’m still in shock and denial. And tons of guilt. The feelings of guilt are, for me, the most difficult to cope with.

I am sorry that you lost your mother recently- my condolences 💐

Going into hospital to have your tests and chemo may not seem like a good thing but I spent two weeks as an in patient immediately following my breast cancer/lymphangitis diagnosis and all of the staff were amazing. Being an in patient meant that I got tests, scans, chemo and urgent care immediately- sometimes I had a small queue of HCPs waiting to see me!

Please keep posting. We are here to support you, as we support each other.

I hope the district nurse can give you some advice for keeping the drain clear @FcukBreastCancer How long does it stay in for? I’m glad the headache and nausea are better, and that your temperature isn’t elevated.

Thanks all for your welcome. I've joined a blood cancer charity forum so will hopefully connect with other people with leukaemia that way and there will be others on my ward.

Although I'm reeling from it all, I've been told if I feel ill I need to go into hospital anyway so I think actually being there will free me up from wondering whether I'm ill or just stressed/tired/nauseous from my antibiotics which is happening at the moment.