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

Gosh I was very tired yesterday. It was like I’d been hit by the tired bus but ok again today. Had a lie in this morning and delegated the kids to DH which was fortunate as baby woke up at 06:30 with the clocks going back, so fuck getting up at that time frankly 😂.

@ForestFlowerFairy
I can only imagine how this whole shit show has made you miss food, and also give you a rejuvenated zest for all things food once you can start to eat properly again. I certainly take food for granted, I bet you never will again!

Nan would be thrilled by your cheers! 🥂. She’s always liked a glass of sherry but even more now. She says “not like I’m going to fall over pissed is it, top me up” (because she’s in a wheelchair). She does make me laugh.

Only 2 more radios to go in amazing 🤩. I’m here cheering you on. I really can’t wait for your food weaning updates and hearing you enjoying actual food again.

@cantbelieveIamhere
Yes I did use the cold socks and mitts for the first five weeks but last week I got absolutely fucked off with them and basically told them I’m having a week off. I’ll see how I feel this week if I go back to them. I should wear them I know as the Paclitaxol is a fucker for PN but they just made me so miserable and uncomfortable. Out of everything this shit show has thrown at me treatment or procedure wise, those bastard cold socks were just the worst bit.

I’m one of those shit people that’s always got socks on with cold feet, so I defo recommend you give them a go and see if you tolerate it. I’ve not had any NP so far but that’s probs because I’ve used them.

Yes to filing the letters, my BCN says they’d tell me anything important anyway and the letters are just admin!

@Ventress
How are you doing? How’s the new hair?

@FcukBreastCancer
How are you recovering after surgery?

I hope everyone has had a good weekend all considered, I’ve had about 3 hours sleep in 3 days because my baby has decided that 30 minute bursts of sleep is enough for her and I’m just too stubborn to put her in my bed. Think it’s a sleep regression mixed with new weaning skills but she’s torturing me using sleep deprivation methods.

But I will not give in!!!

I hope you got more sleep last night @cannaecookrisottoand that baby risotto is sleeping better. Sleep deprivation is outlawed by the UN for prisoners but they forgot to tell babies that they shouldn’t use it on their parents!

Cold socks and mitts as well as cold cap? Jeez. Even more torture.

I got my pub Sunday lunch yesterday in Truro (did you know Truro is the most southerly city in the uk and also the only city in Cornwall?) Lovely cathedral too. I’ve been to Cornwall lots of time but managed to avoid Truro somehow so visiting yesterday was good.

I’m feeling quite self conscious about the hair actually. I wore my baseball cap in the pub (usually I would take a hat off indoors) so that felt weird and I felt like everyone was looking at me and judging me. I haven’t been out much the last few months so being “in public” is feeling decidedly odd.

Chemo wasn’t so great on Friday as the vein the cannula was in decided to constrict part way through and it felt like my hand was going to explode (pressure). They got it working again but had to reduce the speed significantly so it took hours. I thought I might be told that I would have to have a port fitted but they will just use a different vein next time and hopefully it will be okay.

I hope everyone is having a calm and peaceful day and that @ForestFlowerFairy’s radiotherapy goes well today (penultimate!) and @cannaecookrisotto’s blood test is okay. Countdown to final chemo for @DanFmDorking!

(sigh) – well, there has to be a first time I suppose - in the waiting room for the phlebotomists – I knew I was next to be called so I was standing by the door – a younger bloke offered me his seat – do I really look that old and/or infirm? – I was embarrassed - I politely declined – at least he was being kind.

@Ventress – thank you for thinking of me - Bloods done this morning – I have a consultation (by phone) with the oncologist tomorrow morning to review my bloods and to give a go/no go for my final Chemo on Thursday – there’s a real chance they’ll delay it by a week because of what happened last week – I’m not going to go into it because my side effects are pathetic to what you lot have to suffer – I’ll see what the quack consultant says.

I had my roast lamb on Sunday - not too pleased – the plate was warm, not hot – potatoes overdone and hard – Yorkshire pudding was very solid – lamb was very chewy (does that mean it was under done?) – not happy – at least Arsenal won 🙂

@Ventress - eeeek heck - that cannula problem was awful - can you get a 'port' fitted? - enjoy the roast?
@ForestFlowerFairy - hope it want well for you today
@cannaecookrisotto - bloods Ok?

Look after yourselves peeps 😜

@DanFmDorkingim a big believer in everyone's symptoms, side effects etc are just as important as the next person's. Please don't think that what you have may not be as bad as someone else's so won't be mentioned. There are days when the smallest thing will tip me over the edge, frame of mind is a huge element in the impact of the physical.
That said, your roast dinner sounds like a bloody travesty, THAT would have made me loose my sh*t! I adore lamb and remember having it out once and it was slimy and fatty and the biggest disappointment, makes me nervous to order lamb out but my OH is a weirdo and doesn't like it (unless smoked and shredded ) so I rarely have it, yet a lamb shank in red wine 🤤

Tomorrow is my last radiotherapy day (yay) my absolute favourite radiologist isn't working so I gave her a thank you card and a huge hug today, it made me quite emotional. She invited my husband in to see the machines and he was like a small kid being shown a train, his excitement was off the scale!

The good news is, I saw a new consultant re pain today, and instead of morphine has given me oxycodeine in the hope I'm less zombie like and steroids to try and help the inflammation around my sinuses - he's told me to expect it to get worse before it gets better and was less committed to a 3 week timescale as the nurse was last week but has assured me eventually things will improve.

I do hope everyone else is getting on well and finding peace

Baby Risotto has decided that sleep is now a good idea and slept like a brick last night - however I didn’t. I think I was on edge waiting for her to start but she didn’t. I couldn’t switch off, managed to fall asleep about 5am then was up at 7am. But I don’t feel too bad today, I think I’m that tired I’m now wired?

I’ve just had a cup of Ovaltine and hoping to try and nod off tonight at a decent hour. It’s not like I’m lay worrying either, I’m just awake, very strange.

Mums coming tomorrow to help me clear out some crap from the house. I want to redecorate DD8s bedroom but need to throw some stuff away first, same for downstairs. So amen to my madre coming armed with bin bags and Zoflora!

@Ventress
Yes the cold socks and gloves are absolute arseholes honestly. I used them for 6 weeks but I just can’t tolerate them. I hate admitting defeat and if I start showing signs of neuropathy then I’ll have another go but I just can’t do it.

Sunday pub lunch sounds amazing, even better having one in Cornwall. I’ve only been once to St Ives and it was the most beautiful place. It’s almost like being abroad. I’d love to live there but I’d need to sell a kidney or one of my kids.

I’m sorry you’re feeling self-conscious about your hair, I know I would feel the same. Our hair is such a big part of our identity isn’t it and it’s a big deal having to step outside looking so different.

I feel like my confidence has been shattered through the floor as a whole (and I’ve not lost hair yet so I can only imagine how difficult it’s been for you). 3 months ago I was on a podium doing a workshop to over 200 people, today I don’t want to talk to anyone at all. It’s just really fucking shit isn’t it Ventress. In reality, I bet nobody is staring or judging but that doesn’t change the fact we feel that way ❤️.

Also sorry to hear your naughty vein decided to play funny bastards during chemo, that sounds bloody painful 😱. Are you not keen on the idea of a port or PICC? I have a port, my veins are shocking, my first few weeks whilst waiting for a port were just an exercise in blowing my veins. They said they are allowed two attempts per nurse and I must have got through half the unit. I do love my port now, I can’t tell it’s there anymore and they just plug me in like a Tesla.

I hope your ok now and your hand isn’t too bruised ❤️.

@DanFmDorking
hahaha! He might have just thought you looked a bit peaky and needed a rest? 😂.
I offered my seat to an older lady in the waiting room a few weeks ago, I feel bad now in case I offended her!

I really hope your final chemo goes ahead as planned so you can get it over and done with. I’m crossing all my fingers and toes for you. You’re not pathetic at all Dan, side effects are massively shit whichever way you look at it. That’s what we’re all here for, to listen to each other moan and get it off our chests :). Nowt wrong with a good rant!

The lamb roast does indeed sound terribly disappointing. I would have been very displeased with hard roasties and chewy lamb!!

@ForestFlowerFairy
I hear you on the side effects - the one that’s done me in this week has been my lack of taste and my mouth. Since Sunday I haven’t tasted anything other than the revolting taste in my mouth and nothing is helping.

Last radio tomorrow!! I’m so pleased for you 🥳. It’s lovely you got your favourite radiologist a card and a huge hug, also nice that they invited your husband in to see the inner workings of the mysterious machine!

Great stuff on the pain relief and steroids, I hope you start seeing a difference very soon so you can start feeling a bit more normal.

Whats next in your treatment plan? Or are you done for now and it’s rehabilitation time to start reintroducing food?

Is anybody else experiencing chemo fog? I feel so away with the fairies, coupled with the shit sleeps I’ve been having it’s a surprise I’m functioning at all. But I’m running at like 55% brain power and I can really tell; in my spelling, my talking, trying to find the right words, I’ve even started to repeat myself like my Nan!!

I am very particular about lamb. I like it the way I do it (slow cooked so the fat all dissolves out) and rarely have it when I’m out. I’m sorry your pub roast lamb wasn’t good @DanFmDorkingand hard roasties are appalling. I had beef on Sunday and it was very good , not just the beef but the roasties, Yorkshire, gravy and vegetables.

Fingers crossed that all is well for final chemo this week. As @ForestFlowerFairyhas said , please don’t play down your side effects- chemo is awful and what you are experiencing cannot be compared to anyone else.

I hope final radiotherapy goes well today @ForestFlowerFairy. Good news on the change of meds. Have you noticed any impact yet?

Enjoy your room cleaning and clearing @cannaecookrisottoHave you let your daughter choose the decor? I’d have loved to be involved in redecorating my room aged eight!

Ive had loads of cannulas over the past two months and they’ve all been fine. Nobody has mentioned ports or Piccs at any point. It will be 8 of (hopefully) 12 on Friday so I’d prefer to continue with the cannula I’d possible.

Will finish later, sorry, everyone has just got back from their walk and are disturbing me!

I did it.
I finished treatment, I rung the bell and cried a lot!
I'm not entirely sure how I'm feeling if I'm honest, bloody exhausted, incredibly grateful I don't need to go to the hospital 5 days a week, but honestly a little scared with what the next few weeks will bring.
I did upload a video of me ringing the bell on Facebook as so many people have asked to see it, along with a comment that there is still a long way to go, this marks the end of treatment NOT all clear and yet all posts and replies are like 'yay it's over, you can move on, onwards and upwards ' yet until I actually get the all clear I do not feel any of those things.
I do think I'll keep myself to myself for a little longer, I've done the post to thank those who drove me, sent cards and messages etc but for the next bit I think I'm just going to focus on maintaining my peace. I have a jigsaw, yet more books (looks at the pile of unread books already on the bookcase) and will remain curled up on my chair with a blanket when it all gets too much.

What is the result with chemo @DanFmDorking? Is it your last one this week? I do hope so and you don't have to wait another week.

How is the decluttering @cannaecookrisotto ?
We did a room makeover for my daughter this summer, we have similar tastes so no conflict over choices. she painted, and built the bed, draws etc, I got to pay for everything. Seems a fair swap but I'm not so sure you'd want to trust an 8 year old with painting.
My son at 16 painted his room we'd always said do what you want but when you move out we expect it white. Well, he did it dark grey with black ceiling - he did paint it white when he moved out at 18, he just failed to move furniture so when he did take all his stuff there was a manky dirty white and the outline of his bed and wardrobe 🤣
At least he took the furniture so I could rip out the flooring and get a decorator in, the skirting and coving have never recovered though!

Well done @ForestFlowerFairy For the bell and also for marking time on unpacking the rest of the “really, no!” for those who mean the best but really don’t understand.

It may not be the end @ForestFlowerFairybut it is the end of this stage of treatment. How wonderful that you rang the bell! Not having to go to the hospital each day must feel good. Enjoy those books and jigsaws and get a good rest. When is your next follow up?

I hope your chemo goes well today @cannaecookrisottoand @DanFmDorking(hoping it goes ahead for you).

I have a call with the specialist nurse this afternoon. Not sure what to expect from that. I saw her for about 30 seconds while I was in hospital and not heard from her in the 6 weeks since. She has sent me a MacMillan online questionnaire to complete which was more about feelings and emotions than how I feel physically. As my feelings are very much untethered and irrational goodness knows how this call will go.

Best wishes for peaceful and pain free Wednesdays 💐

@ForestFlowerFairy – thank you - you’re kind but my symptoms really are minor compared you lot.

@cannaecookrisotto – thanks again – yes, perhaps I just have to accept that I’m becoming an ‘old man’.

@Ventress – I might try another pub that does Sunday roasts and compare the two.

@ForestFlowerFairy – Oh ace – excellent – I’m really pleased for you - feeling exhausted and grateful is perfectly understandable – well done.

Tuesday update – after a chat with Oncology my Chemo has been cancelled and put back to next week. So next week will be ‘action week’ – bloods on Monday – Oncology ‘face to face’ on Tuesday and my final Chemo should be on Thursday - I’m quite happy about this.

Happy Wednesday peeps 😜

Major rant alert
I shall read everyone's updates shortly but for now I'm pissed off and ranting. You've been warned!!!!
As you know, I rang the bell on Tuesday.

Wednesday was my first day at home with no hospital appointment for 6 weeks. I could take my pain medication every 2 hours and OMG it was amazing. I actually felt human, yes I was uncomfortable but compared to how I have been it was absolute bliss. Husband got in from work, we had a bath, he washed my hair, we bought the newest Downton film on Amazon and just before we hit play at 6pm I went to do my 2 hourly pain relief and my evening shake replacement.
At this point, my feeding tube sprung a leak.
No problem I think, we call the 24 hours emergency line and they tell us what to do.

They tell me a nurse will call me back shortly.
Hour later....no call, I phone again. Very sorry she says, someone should have called, I'll chase this.
I explain I'm nil by mouth, late on pain meds - if the nurse will just tell me to go to a&e I'll go now before I get any worse. No, no she replies. The nurse will come to you, don't go to hospital.

Another hour, by this point it's 8pm all pain relief is gone and I've now missed 2 doses. I call again, speech slurred and crying. She tells me someone will call in
830pm I call, nothing just they will phone you in 10 minutes. Husband decides this is ridiculous and bundles me in the car and takes me to a&e.
A&e was at maximum capacity, all beds full and despite a triage around 11pm they had nowhere to put me so couldn't give me any pain relief except some paracetamol in a cannula as they can only give something stronger if your in an actual bed.
At home I have oxycodeine every 4 hours with paracetamol at the 2 hour point to keep the levels topped but it's in no way suitable by itself.

I would like to make clearly as miffed as I am every staff member was beyond stressed yet kind, they continuously apologised, really did show they were doing the best they can and explaining why they couldn't do more.

A shared side room was found around midnight so I sat with a man coughing and complaining he was there 'bloody hours' they did move him as soon as someone left so we had the room to ourselves by midnight.
At 1am I was finally given some oxycodeine via an injection, as it took them 'time to find it' at this point it's been 8 hours since my last dose and the relief was there within 15 minutes. By 2am a surgeon was down, changed my tube and sent us home.
It was so bloody stupid, a tiny tear in my tube stopped us from using it. I knew it was there for food and water etc but I hadn't really realised just how reliant I was on it for pain medication.

What makes me angry? Had the bloody stupid emergency hotline actually bothered to call me, had they not told me NOT to go to hospital at 7pm who knows, maybe I'd have been seen sooner, my pain meds wouldn't have run out quite so badly and I wouldn't have spent the night sobbing in a&e at the pain.
And incase you're wondering....the Rig nurses still haven't called. As far as they are concerned by tube is leaking and I can have no food, water or pain medication.

I really feel let down, what is the point in these numbers and processes and systems if they do not work? Going to a&e wasn't the problem, delaying me going until I was in pain with an empty promise of someone coming is a problem.

So, there you have it, I may have rung the bell but my first day escaping from hospital was in fact spent in hospital crying in pain.
If anyone from Princes Dianne hospital is reading this. Thank you, I know it wasn't your fault - and I know as individuals you are working in a broken system without the resources you need and I appreciate you all doing what you could but please please please, it took 4 hours from us arriving to any form of real pain medication, and it took just 15 minutes to actually kick in and help, please find a way to prioritise this for other patients, I could have waited all night and day for the rig change but I needed help with the pain.

Rant over

Oh my goodness @ForestFlowerFairyi am so sorry you went through all that 💐I hope you are comfortable now and not in pain. please get some rest today. What an absolute shit show. Good for husband taking you into hospital.

@ForestFlowerFairy that is absolutely terrifying, no wonder you are ranting, and why wasnt the unit where you were treated able to help you?

I hope that you are able to recover and that this is a one off, good job you had someone with you.

@ForestFlower fairy
Sorry you went through this. My similar experience was following post op discharge instructions to call the ward (when my drain site was bleeding). It said very cleary to make sure you sort anything on a Friday before weekend. No answer. Eventually called clinc who told me ward closes thurs lunchtime. I shall tell them to update their leaflets!

I have been a bit dissatisfied with post op follow up.

My general update
I'm on antibiotics and have a special dressing on. Thought it would be healing by now so a bit annoyed and arm movement is becoming restricted. My wound in armpit area needs to stay mobile so it's harder to heal. I'm sure it will get there soon

It seems it's a bit of a cluster fuck of things going wrong.
My cancer treatment is all at Castle Hill near Hull. However we live along the Lincolnshire coast, so the rig team that cover my area is Lincoln. So anything chemo or radiotherapy im to contact Castle Hill, anything rig related is the team at Lincoln, and a&e is Grimsby...so neither of those 2 locations!

According to the voicemail I got this morning the phone lines were down and that's why noone bothered to call....the message said they've lodged a complaint on my behalf and an investigation and that a nurse will call today in response to me calling yesterday.
I did get a call mid morning and I suspect I was a smidge rude because when she asked why I'd called and how she could help I told her she couldn't.
Explained what happened, and she seemed pissed i was told not to go to hospital because the switchboard are in no way medically trained and should not have said anything other than get my details and pass it along to her team.
I gave her times of all my calls because she was also unaware of quite how frequently we'd chased. When she'd picked up the phone to call me she had assumed it was a normal call back.

Today has been a bad day, I'd hoped once I got back to my routine of pain management it would be better but I think the gap in treatment, lack of sleep and new tube has set me back at bit - new tube is weird, it has a screw top and much firmer, (the last was a push in and quite a bendy tube) which makes holding and kinking the tube whilst I unscrew the syringe and screw on the cap quite tricky with just me. I hope in a few days it'll become less stiff and easier to manipulate... Urgh I'm grumpy I don't like to be grumpy.

I do have a lovely update, today was the whole company team meeting, we all work remotely and even though I didn't join they all made a heart sign with their hands and screenshot the teams video like a collage so I could see all my colleagues sending their love. That also made me cry, but at least happy tears this time - it's so nice to know they are thinking of me.

@FcukBreastCancer I'm so sorry you're struggling as well, the care has been fantastic until last night, I do feel a little nervous of this switch between mixed care now - you trust in the information they provide, you follow the guidance only to discover someone somewhere failed to do something or update the notes.
I shall keep everything crossed your arm pit wound starts to heal soon, everything seems to take so much longer when our bodies are battling everything else.

Oh my god @ForestFlowerFairy that sounds horrendous!!
I’m coming back shortly but in the meantime, have a read of this in relation to “ending treatment”, I found it very poignant:

https://workingwithcancer.co.uk/wp-content/uploads/2013/03/After-the-treatment-finishes-then-what.pdf

Hey all, I’ve had a sleepy couple of days, my dad had both kids last night and I fell asleep really early! Was bliss.

The house is immaculate thanks to mum and her rubber gloves and I have a new cleaner starting on Weds next week, so when I come home from chemo it will be to a nice clean and tidy house. Little treat for myself plus I need to admit defeat now.

DDs bedroom, we’ve agreed to white walls still but she’s seen some canvasses that she likes and we definitely need some teddy/soft toy hammocks. She has lots of those Squishmellow things that she is refusing to give up and at this moment we could probably fill her floor with them. So they’re in like a den under her bed (she has a high sleeper) but I need them out of the way. So hammocks it is.

All of which could be moot as I’m going to view a house on Sat. DH is a bit against it, having the stresses of moving alongside treatment and everything else but it’s a lovely home and has a garden office - which for me is the dream. I’m still renting and what’s really sad is we’ve just managed to save enough money for a deposit, but I’m now going to be fuckered applying for a mortgage with cancer diagnosis. My mums sent me the number for a mortgage broker but in the meantime I need a bigger house.

In other news, my gene testing for BRCA and all the other whacky genes has come back negative. So no rhyme nor reason for my shit tit, just bad luck. I’m really pleased as obv it means I’ve not passed anything onto my girls, but in a weird way I would have liked to understand exactly why this is happening. I’ve never asked “why me” because why not me? Nobody deserves this shit but fuck sake, the randomness of it annoys me.

@ForestFlowerFairy
Well done you on ringing the bell!!
I agree with everything you’ve said. To me, ringing the bell is the dream but I’m a bit scared of the after bit. Like being released back into the wild type feeling and I’m worried this period will be when I need the most help psychologically. I starting doing some research and came across that link I posted above. Everything he says resonated with the worries I was feeling, like people expecting you to “go back to normal” or “get over it”. Have a read ❤️.

I’m so sorry for that horrific saga with your tube! It sounds bloody awful, I can’t believe they just expected you to go that long without food, water and pain relief. It also surprises me that they don’t have some kind of business continuity plan in the event the phone lines go down - it’s an emergency hotline for fuck sake. Like have secondary mobiles on site or something. It’s not good enough really just leaving people in pain, hungry and dehydrated.

A&E is never a quick or easy experience either, I’ve not had to attend recently but I went with DH back in August for his piles (he was literally passing a toilet full of blood, we had pictures in case they didn’t believe the amount) and we were there from 9pm to 6am before seeing a doctor, to then be told they couldn’t explain where the bleeding was coming from and they would refer him for a colonoscopy which would take up to 3 months. He carried on bleeding like this daily before we went to another local hospital where he got seen promptly and referred for urgent scan 🤷🏼‍♀️. It’s truly a lottery sometimes isn’t it.

I hope the new tube becomes more compliant, might need some breaking in… 👀.

The work meeting collage sounds really touching, that would have made me shed a tear too. I bet they all miss you very much. One of my clients did a day of pink in my honour and raised some money for BC awareness. They sent a picture of them all and that made me well up. Sending big hugs xx

@Ventress
How did the call go? I think untethered and irrational sounds completely reasonable considering everything you’ve been through and continue to deal with. For a start how you were told in A&E is enough to give lesser mortals PTSD ❤️. I hope they offer you support and anything you might need to ease the mental side of it.

I think you’re fucking superwoman frankly and I wish I could take this shitty disease away from you (and all of us).

@DanFmDorking
Never accept being an old man. You are as young as you feel!! Saying that, some days now I feel about 75!! I woke up on Tuesday with a hamster type ball in my neck. Swollen gland. It hurt like a bugger. I was panicking thinking “lump” meant bad but the rational side of my brain was reminding me that both kids had colds and this my shit immune system trying to limp along. Wednesday - chemo day -
I had sore throat to go with it. My blood’s and IBS come back normal and they were happy to proceed with treatment. But by god I felt like shit. Then today I woke up feeling fine! Sorry to hear your chemo has been deferred a week but I’m so glad it will be your final one!

@cantbelieveIamhere
How are you getting on? X

@FcukBreastCancer
Have they given you any post-op exercises or anything like that? I hope you get to healing quickly and the unrestricted process begins.

I hope you got more rest last night @ForestFlowerFairy. Hopefully the tube will become more malleable with use and familiarity. I’m not surprised you were a little hacked off on the phone, I probably would have been livid. Being passed around between departments is bad enough, between hospitals is awful.

Your team sound lovely ❤️

I hope your wound heals soon @FcukBreastCancer

Im pleased that you are pleased that your final chemo was delayed to next week @DanFmDorking Good luck finding a new pub which ticks all boxes for Sunday lunch and football!

I’ve been blaming the young person for my back to back colds too @cannaecookrisottoI’m glad you’ve managed to shift it quickly. Have you had your flu jab yet? Apparently it’s an early flu season this year.

Your daughter’s room make over sounds lovely. When DS was young he had a toy hammock and it was so useful.

I would go for it regarding your house viewing- it’s a buyers market at the moment so you may get a bargain. Town and Country are very good for mortgage advice. It is more complicated for the self employed anyway. Have you put in your PIP application yet? I hope you’ve managed to catch up on sleep.

I am in the chemo waiting room - school holidays and lack of traffic meant I was here super early. I had a lovely time in Cornwall. So nice to get away from the usual four walls for a few days.

Tne call with the specialist nurse was interesting and informative. She has sent me a bunch of links for support sites and so on. I cried at her randomly (and used these outbreaks as proof of my strange emotional state).

In other, non cancer, related news, I threw a lot of my toys out of my pram at my parent’s estate agent and conveyancer this week. Apparently the rest of the chain had agreed to exchange today and complete next Friday. I replied saying 1) this was not a discussion I had been included in, 2) we can’t exchange today as we haven’t had the purchase contract from the solicitor and 3) I have said all along that I can’t have completion on a Friday as I have chemo every Friday which can’t be moved (yes, pulled the “cancer card”) but wtf? Anyway we have bullied, stropped and generally been annoying and now have the contract to sign. Exchange planned for next Friday and completion on 18th November. My sister and I are going to the parents on Sunday to break the news, get them to sign, and make a big list of everything we have to do. We also have a removal company coming to quote. We are going to get them to do all of the packing as well as removals.

About to get my pre- med now so I’ll stop waffling on.

Calm and peaceful Fridays to you all!

Yes I have physio @cannaecookrisotto
But as my wound was a bit sore I eased off, as advised.
Now though I think I'll start them up again as a defective arm feels worse long term than a slow healing. Dh said I must keep it moving. He's a surgeon so probably knows best, although I don't take his advice as well as I should.

Quick post aimed at @cannaecookrisotto- my chemo nurse today used to work in the benefits office. She said when you apply for pip (or any other benefit) use MacMillan as they know how to complete the forms so they are less likely be rejected. She said the benefits office will reject a claim if they possibly can. Also, if they do reject your claim MacMillan can advocate for you.

@cannaecookrisottoI am so pleased you've found a cleaner so quickly, I can't imagine anything better than coming home to a clean home.
Can I also say how amazing that letter is from the Leeds Doctor. It really does say very eloquently how I am feeling about this next stage and I do think it's a stage that needs to be talked about more
Side note, I do NOT miss the age of millions of teddies! Though I'd quite like the 'get your crap out my loft' stage to end!! It seems we can't take anything to a charity shop and instead must throw it in the loft and forget it every exists.

@VentressI do hope chemo is another lovely safe day of tea and biscuits to round off the trip to Cornwall.
Here's also hoping the house sale calms down a little, I've just found out my parents in law have put an offer in on a house and totally lost their minds because it was rejected.... because there house isnt even on the market let alone sold. I suspect guiding them through this is going to be a painful process.
My mum however is in, she got the keys yesterday and I'm doing my very best to only send happy positive messages. Have hidden the feeding tube saga from her as she'll be hop footing it here instead of unpacking and making the new house a home.

Today I am pleased to say is a better day. I could not sleep and was up until 4am so I was getting a smidge upset that today would be bad, but slept 4am-8am and feel like I did Wednesday before the tube saga!! I've actually sorted my wardrobe out, all summer and spring clothes are in bags, winter stuff is unpacked and thanks to the worst weight loss scheme in the world trousers I've been holding onto for 5+ years with a 'they might fit one day' actually do bloody fit!!!
It feels like a productive day and I've been in comfy clothes for so long, it's nice to really go through what I've got, move things that I know I can't wear (tight necks, polyester etc) and find things that were buried under the crap that I can wear and hopefully not feel like a bag lady every day.

What a great way to spend your day @ForestFlowerFairyand finding that the “might fit one day” clothes fit again, despite being for the worst reason is still a tick in the positive column. Enjoy wearing those trousers! Glad you have had a better day today.

It’s great that your mum has the keys to her new house - how exciting for her. I wish her all the best in her new home.

Oh Wow, your in laws. Good luck with explaining how house buying works. Actually you should delegate that to your husband 😊

I missed the part about securing the cleaner @cannaecookrisottothat was fast work! Well done. Can you organise one for me please?!

@Ventress
I’ve yet to have flu jab, it’s on my list. My mum works in the local pharmacy and she keeps telling me to bob in and she’ll do it for me. It’s just actually getting round to do it. I should though because I’ve heard the flu strain is extra shite this year. Last thing any of us lot need. I’ll go in next week.

I’m chuffed you had such a wonderful time in Cornwall. It’s a beautiful place. I’d love to live there!

I’m defo going to go and view tomorrow, like you say no harm can come from it and it might turn out how I want it to, I can only try. I’ll look up Town and Country for sure, I’ve been cultivating my accounts for the past 12 months specifically for mortgage application. Would be a shame to give up now.

I haven’t applied yet for PIP, another thing on my never ending list of to-dos 😱. I’ve heard that about MacMillan too and assisting with the forms. I tried to help my step dad with his PIP application (he has Huntingtons and is genuinely disabled, I have to do all his life admin, help with his finances, remind him to shower and he has the physical movement symptoms so cooking out of the window) and he was rejected!!! So we have to go to tribunal now. Boggles my mind. We managed to get him through the UC health assessment thing really easily, so he doesn’t have to look for work or provide sick notes anymore. It’s really sad, my dad was a proper working man all his life and now he struggles to drink a cup of tea without the movements making him spill it.

Glad the call with the specialist nurse was interesting and informative. Will she be following up with you in the future? It’s nice to get some “safe” links too. I’m a bit shit scared of the internet in general at the minute. I joined some FB support groups and I regretted it very quickly. Some of them turned out to be quite American. I had to unsubscribe from these because they were quite heavy with alternate therapies and people trying to convince each other that they cured their own cancer using wild mixtures of herbs and what not. No thanks.

Then my FB algorithm must have learned that I have cancer from the groups I’d joined and now every time I open FB I’m just met with a stream of literal cancer. So I can’t even stalk friends and family in peace anymore.

Your parents house move sounds stressful and I honestly don’t blame you for playing the cancer card! 🙏 to completion on 18th November. A removal company sounds ideal. Outsourcing the heavy lifting and stress is my kind of life 😂.

Hope chemo went well for you today and you’re now resting and feeling as well as can be after a dose of the old weekly toxins.

@FcukBreastCancer
oooo what type of surgeon is your DH? Does he come in useful with doctorly advice? I’d love having a doctor DH. Mines a mechanic. He does have his uses don’t get me wrong and I’ve not had to pay for any repairs, services or MOTs in about 10 years which is nice but I’d love him to be able to triage the kids for illnesses when I’m poking a rash trying to decide if it fades or not and if a 111 call is required. I once took my PFB to A&E when she swallowed bath water because I convinced myself she aspirated it and would succumb to “secondary drowning” (thanks Google). So yeah, that was embarrassing.

He’s probably right in that you need to keep it moving but that’s easy for us to say, you know your limitations and you’ll get there with it. Slowly slowly catchy monkey and as long as it is indeed moving, you can increase the vigrorisity (is this a word??) in which you move it :)

@ForestFlowerFairy
It’s really lovely to hear about you waking up and feeling like you did the Wednesday before tube-gate! ❤️.
it always feels fab getting the wardrobes in order doesn’t it. I always end up back at square one before long with pants mixed with tops and god knows what else.

Yes! The cleaner! I found her through my mum. It’s a local lady who has just started her own business and is going to mums on Tuesday next week to do a deep clean. Not sure what she will be deep cleaning because my mums a bit of a clean nutter. God help me when I was a child/teen and left a tea spoon in the sink 😂. So the poor cleaner will be there for 6 hours on Tuesday frantically looking for something to clean. My mum cleans her blinds for fun.

So I got the ladies number from mum and arranged for her to come to me on Wednesdays. I think it’s nice when someone local is just starting out, the only thing is she seems to be massively underselling herself, the rate is really low at £15.00 per hour. My past cleaners have all been £20+ph. And she’s using all her own products, I offered mine and she just asked to use the hoover and mop!

I’m glad you found that letter from the Leeds Dr amazing, I did too. For me it was what he was saying about our sense of safety in the world being undermined. It’s like I was reading my thoughts written down.

I’ve never been in the loft in this house - I do however had a cellar and it’s all to easy to just shove the shit down there and worry about it later. Also useful for keeping the tumble dryer (kitchen doesn’t have room).

In other news, I spent the day at the Trafford Centre today for my nieces birthday (she’s 9 today, not far ahead of my own eldest DD). I left house at 10am and got home at 5pm. Between the kids, the traipsing round with the youngest in her pram, the feeding of the kids, walking, driving, it’s safe to say I’m well and truly buggered this evening and will be paying the fatigue tax tomorrow I think. My body is so tired but my brain won’t switch off, thanks to the Dex no doubt.

Ah well, let’s see what other shite I can buy in the middle of the night! Wish me luck!

Hope you have all had calm and peaceful weekends.

@cannaecookrisotto - have you caught up on your sleep? I hope you haven't spent your savings on random tat in your middle of the night shopping extravaganza! How was the house viewing?

That's total rubbish about your step dad having to appeal for PIP. I hope your appeal is successful. Is there a MacMillan equivalent for HD who could help with the appeal?

@ForestFlowerFairy how are you? How are your side effects now that radiotherapy is over? I hope your new feeding tube is is working well for you.

@DanFmDorking - how was Sunday lunch? Football seems to be going well. Last Chemo countdown too

No Sunday lunch here as my sister and I spent the day at our parent's house preparing them for their house move. We had a big to do list and have crossed loads off it so I was feeling absolutely tired out yesterday evening but in a self satisfied sort of way.

@FcukBreastCancer @cantbelieveIamhere @PatsFishTank and everyone else - how are you guys doing?

I had my oncology consultant appointment this morning and not much good news to be had unfortunately. My chemo is going to be extended for at least a few weeks (providing I can take it of course). The reason is that the bone density scan I had a couple of weeks ago shows cancer in my sternum, ribs and possibly my skull (although they didn't seem sure of that). Nothing in my spine though which is a small ray of light.

I now have to go to my dentist to check that my teeth and jaws are okay to have the Zoledronic acid treatment. Zoledronic Acid is to try and prevent bone weakness. I will also have Calcium and Vit D supplements. Once I have the dental sign off I can start the Zoledronic acid infusions. So, off to the dentist on Thursday for an oral health check!

@Ventress so sorry to hear your update. That's shit.

I'm on my 8th day in hospital and 7th continuous day of chemo. I've been very nauseous, struggling to eat, feverish, also zero energy. It's difficult to process I've got months of this ahead - that I'm just at the starting gate. I'm trying not to think about it and to take one day at a time.