Stage IV cancer? Incurable? Roll up, roll up, this thread is for you!

@balkanscot Oh yeah I had neck pain at first too from the incision where the weird tube snakes over my collar bone, I'd forgotten that. The tube can still make cross body bags slightly uncomfy where the strap hits it.

@TwigTheWonderKid Am doing ok, thanks. Currently infusing chemo from my handy take home bottle. 'Nice' to be back on chemo after quite a long break due to first weird liver results and then chest infection.

Smudge looks like a beautiful cat statue!
https://i.pinimg.com/736x/7c/a3/a1/7ca3a19ef7825c25dd1b03dbe72ca736--white-cats-antik.jpg

@SewingBees Oh we have an arrangement on here that if Google scares anyone I will hit it hard with my umbrella. I am thwacking it for you right now! The rabbit holes are the worst as I believe the Google rabbits have long fangy teeth and red eyes, you really don't want to mess with them but they are all terrified of my umbrella! It's like playing whack a mole but it's whack a Google rabbit. 🔨🐰

Wonderful about the walking, well done and it is worth it whatever the brain is whispering. So easy to feel there's no point. I get scared and/or despairing and think that too often. But then everyone on earth will die and if you think about that a lot it can seem there's no point to anything anyone does. So I guess the things we do matter as much as anyone else's things.... if that makes any sense at all. My docs bang on about quality of life etc so I mutter the naff anthems to myself 'quality of life' and 'self care' and then get on with the washing or whatever wonderful and important task I have in front of me..... 😂

Love your pics, Rosa and Fitzroy are darlings!

Sending you big big hugs. I'm finding it all hard but don't have children and can only try to imagine what it's like for you and all of the rest of you on this thread who do.

@WrenNatsworthy Best of luck for being able to get cyberknife treatment and finding the perfect key lime pie!

@Tilllly Fingers and toes crossed for good scan results and knife treatment going forward. Daisy is really going to eff with your hard woman image I'm afraid.

No but there's time yet ;)

@SewingBees
You're allowed to have the gloomies, you know?
Sometimes you do just have to wallow in it for a while

It's a bit wanky but have to tried writing a list of all the poo 💩 bits in life and all the good 🌈 bits?

The gloomies, that's the right name for it! Thanks all for your understanding.

I did get to sleep in the end, and of course I'm feeling better today. Taking Rosa to the vets to find out about getting her spayed so we don't have two horny dogs to handle on our Easter trip to Scotland. So there's something to be looking forward to.

Then test driving a new car with mum. She should probably be thinking about giving up driving but her social life would be massively impacted without a car. This one's an automatic which will be easier for her to manage. She's also stage 4 bc so she also needs to be making the most of the life she has left.

Well, this afternoon turned out to be a shitshow. I suffered a bad allergic reaction as soon as Paclitaxel was connected - tingling and numbness of my face/head, difficulty breathing and back spasms. They loaded me up on Piriton and corticosteroids which brought me back. Because my treatment was scheduled towards the end of the day they didn’t have time to start slowly releasing Pacliaxel, so next Tuesday we go again with that. Apparently this works with a lot of people who have suffered an allergic reaction to the drug when it is releases at its usual speed.

They don’t have buzzers in the day ward. So it was down to my friend who accompanied me to raise.the alarm. I was certainly in no state to do it. I mean, no buzzers, what the actual fuck???? I was also seated in a tucked away corner as all the other chairs were occupied.

It frightened the shit out of me and I am beyond petrified about next Tuesday. And also deeply disappointed that this poison is not inside of me giving my liver mets a hard time. Off to watch some more pet photos to cheer me up.

Oh @balkanscot that is so rubbish. I had a horrible reaction to my first Oxaliplatin. Luckily it was right at the end but it was so scary for so many weird things to be happening to my body.

Our chemo unit is one big room with all chairs arranged around the walls facing into the room so they can immediately see what's going on. I can't believe they left you alone tucked in a corner for your first treatment. Also did they not give you steroids before your infusion? I have steroids, piriton and a Lorazepam about 30 minutes before my infusion which I also have over 3 hours rather than 2. But what really made a big difference was the dose reduction I had on round 3.

I'm so sorry that happened to you. I hope you can enjoy you weekend with your lovely boy.

@balkanscot Smudge is being very uncooperative on the photo front after we tried and failed to do his flea treatment this afternoon but you should find this video amusing and distracting:
Gandalf Sorry can only link to it via Facebook.

@balkanscot No buzzers - what? And no-one monitoring you? For your first IV chemo? What the fuck. That's not ok and be sure when you go again to tell them what happened last time and remind them it's to be done slowly, and that someone must come round and check on you and take vitals every few minutes, and you must have a buzzer or some way to contact them. And does your oncologist know and have any plan to stop this happening again? It shouldn't just be up to the chemo nurses. Good grief. Hope you have someone to take with you again. I'm so sorry you've had to go through this terrifying experience! Very very badly managed on their part. I'm just fuming for you. Hugs and I hope you'll be ok.

@balkanscot
My friend has v recently had same and was fine on slow release

Gandalf is hilarious @TwigTheWonderKid

She is @Tilllly though it must be like living with a tiny, furry toddler!

I wrote a message, then got distracted, and I left the page without posting. Gah!

Anyway, they did give me a dose of Piriton, plus steroids and anti sickness drugs before the started infusing me. I just don’t understand why a) a member of staff doesn’t stay with you for a few minutes, knowing it’s your first infusion and that there is a possibility of allergic reaction; b) fit the damn buzzers! c) The bay I was in is L-shaped, so I was in the L-shaped bit without the possibility to look anywhere toward the nurses’ station. The chairs are against the wall, so the people opposite me could catch a glimpse of the station a little bit, whereas I was sitting opposite them, so the nurses’ station was behind me and with no possibility to see it at all. But that seat was the only one free as it was super busy.

Ah, the cats, they do brighten up my day. I am sure I saw some similar footage with the title “Cat are dicks”. Doing much the same as in the link. 😻

Oh it's so bloody frustrating when that happens @balkanscot It often happens to be when I navigate away to find a link.

How are you feeling today?

@TwigTheWonderKid beyond frustrating as I always got exemplary care when I was in the other bays in the same ward. Bay 3 must be the pits.

i have had hot flushed cheeks since this evening, probably side effects of steroids and or corticosteroids. I was given the latter to reduce allergic reaction when it started happening. At least I don’t have a temperature which is the main thing.

I have also just read this. Shed a few tears. Well, a lot, actually.

Thanks for sharing that @balkanscot. I'm so sorry it upset you. It probably sounds awfully selfish but I do find it comforting to hear about other people who are in my position and I actually found it quite uplifting, much of what many people in the article were saying is kind of how I feel. But the interviews with the parents of young children were definitely very upsetting.

Oh I've just read that too today, but on Yahoo. Odd to think of us both reading it...

What surprised me were the people who were running marathons, travelling the world, skydiving, feeding tigers and so on and on, I thought bloody hell some days it's a miracle if I make it to the kitchen and the loo....

Totally agree @LuciaPillson I'm planning a circuit of the park next to my house tomorrow as my great weekend adventure! And how on earth do they afford the travel insurance on top of the holiday?!

I must admit I would love to go abroad on holiday. We'd normally be getting ready to go to Finland in February and looking forward to somewhere sunny later in the year but apart from that, as many people in that article also said, I'm really appreciative of my "condensed" life. But then because I lost my mum when I was so young I think I've always been pretty appreciative of the simple but important things in life like my friends and family, being able to be at home when my boys were little and that in turn meant we were totally skint so had to take pleasure in small, simple things. It was awful that she died so young but in a way she left me a great gift.

Aw @TwigTheWonderKid . So sorry for the early loss of your Mum. What you say resonates with me, being appreciative of the ordinary but very important things, as well as the small things and silly little moments, even the bad little moments sometimes! Hugs to you.

I must say some of those stories made me feel like I had a very low-tier terminal illness as I wasn't racing off to Machu Picchu to wrestle jaguars!

Don't be silly @LuciaPillson
It's tigers on Machu Picchu

😉

@LuciaPillson @TwigTheWonderKid I read the article too and I was struggling with my reaction to it until I read your posts just now. Some of the things people are doing just left me feeling inadequate - a bit like pictures of perfect homes or families on Instagram! So your posts have made me feel so much better. Today I didn't get out of my pajamas and I didn't shower and I've only just now brushed my teeth. But I did play silly imaginary games with my daughter - something that doesn't come easy to me but she loves - and I comforted her when she needed comforting, and I slept this afternoon when I needed to sleep. And on reflection I'm ok with that.

I did also plan a bit more of our holiday to Scotland at Easter, although I'm not sure we can afford it right now so hotel costs are just being bunged on the credit card to worry about later. Friends are stepping in and offering accommodation too and I think it'll be a wonderful trip away for us all. My husband knows how important this trip is to me - revisiting some really important places and memories - and is determined to make it special for us, although it all feels a bit bittersweet too.

@Tilllly Even if it were golden retriever puppies I wouldn't have the energy to go (would not wrestle in that case of course just a light tickle).

I shall now rustle up the maids to polish the candelabras whilst I float in my crystal bath and dream of tomorrow's light excursion up the Amazon (think would prefer the Loire or some such actually as do not wish to be eaten by tigers, jaguars, Amazons, mosquitoes, piranhas or similar).

Me either @LuciaPillson
Or afford the insurance- in fact I think I'm uninsurable

I'm in a mood about a meet up with a group

Won't be going cos what would've been about an hour by car, is 3 hours by trains, plus half hour walk when I get there (and potentially half hour walk this end to get to train) and £30. 7 hr round trip and £30... I could get to France for that and have some energy left over for tickling golden retrievers

@SewingBees That all sounds lovely with your daughter and it doesn't matter a bit about the pyjamas of course! Hope Scotland will be wonderful!

@Tilllly Oh how frustrating for you. It's horrible not to be able to get out and about easily/cheaply and to have restrictions. I had ME for ages before cancer and was often housebound. Couldn't go and see anyone and not that many people came to me. I don't drive and am always pretty limited in where I can go. I dream about seasides and hills, about Japanese gardens and temples or Yorkshire moors and so on but have to live it all vicariously.

@SewingBees That’s a perfect day in my opinion. We had a similar day yesterday. Felt a bit guilty as we didn’t “do things”. But then I just thought, sod it!

@Tilllly Sounds so frustrating! I often think of meeting up in a group setting. My counsellor at Maggie’s is trying to get me on “Living With Cancer” group. I am also toying with the idea of Breast Cancer Now’s “Someone Like Me”. But when it come to doing it, I just fall flat.

I have no desire for a bucket list à la exotic travels, swimming with sharks, perching off a top of a volcano, etc. All I want is to lead my boring life for as long as I can. And get the flat painted by a professional painter-decorator.

I often fantasise about going abroad, on a holiday in the sun (which I have never done) but it scares shit out of me going anywhere too far away on my own with DS in tow. What if something happens to me over there? It would stress me no end. And yes, no insurance would even give me a sniff

I keep getting flushed cheeks ever since the Paclitaxel fiasco on Friday. It seems to go away when I neck a dose of Piriton.