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

@WrenNatsworthy do you know when the Cyberknife team will let you know?

Hi everyone, I've been lurking on this thread for a few months since my Stage 4 diagnosis - spinal mets following BC in 2021/22.

I'm only posting to add to the puppy pics really. She's not a puppy now, she's 15 months old, but still behaves like one. Rosa, the very endearing, very cheeky, somewhat annoying, Airedale Terrier. We also have a very large male Airedale, Fitzroy, all in a very small house. Thank goodness for a big garden!

Hi @SewingBees thanks for dropping in and for photos of your lovely dogs.

😍😍😍😍@SewingBees

@WrenNatsworthy I hope you get to have cyberknife soon. Have they contacted you yet with any dates?

I have portacath fitting tomorrow morning, am dreading it. Then on Friday I get to experience IV chemo delights - my first Paclitaxel session. Also dreading it. Went for a wig consultation this morning as I would like to be prepared for when my hair starts going AWOL. CT scan already booked for 25th March but will need to wait for 4 weeks to find out - way too long (26th April). I may ask them if there is any way of having it reported before then as I will have gone completely bonkers not knowing for that length of time (I know it Easter holidays in between). How can I feel so well while the cancer is having a free for all inside of my liver, HOW???

Sadly I cannot post any pet photos as I don’t have a pet (last one, a cat, died 14 years ago at a ripe old age of 18). So am enjoying an array of pet photos by you all.

Oh @balkanscot I can totally understand your fear at the portacath fitting. I was dreading having my PICC line fitted. I know that's slightly different as it goes in your arm rather than under your skin but the staff will really look after you, you won't feel anything and it will be over before you know it. You will be much freer with a port than a PICC line. My preference was a port but the wait was too long.

And the thought of Friday must also be very daunting. Do you have someone to take you and pick you up?

@TwigTheWonderKid I know it will save my veins in the long (hopefully) run. The nurse at the GP made a right mess of my left arm this morning, then opted for the fist. I have a multicoloured bruise now, the colours I have never seen before! You have to have a PICC line covered, don’t you? At least portacath should be minimally visible during Pilates. I know I should be grateful that things are moving but at the same time I feel incredibly sad and frightened, becoming a stereotypical “cancer patient” yet again. But this time is forever, unlike 4 years ago. Apparently NHS didn’t do portacaths 4 years ago. Or rather, only did them in exceptional circumstances.

I really don’t feel like explaining to my Pilates instructor and fellow Pilatesites. I was mentally drained after speaking to the deputy head teacher yesterday, updating her on the latest news regarding my treatment. I find these conversations mentally draining.

A friend is coming with me tomorrow and Friday. And I have booked a taxi for tomorrow morning, as soon as DS is out the door for school.

Yeah the PICC line is a bit of a pain in that it has to have a dressing and a sleeve thing and a waterproof cover when I shower or bathe and it also limits what I can wear a bit, plus I have to have it flushed weekly. But I also love it. It makes everything so much easier. Before I had it fitted I had a scan where 3 Radiographers took 5 attempts between them to cannulate me but the real low point was when the magician chemo nurse got the needle in for my bloods but the blood stopped flowing and she had to keep redoing it. I felt like a blooming pin cushion. None of that with a permanent line. And yes, your port will be minimally visible I think, compared toine which is quite bulky.

Glad you have some support and company for your appointments.

How is your DS holding up?

@balkanscot My port fitting was smooth and unscary, I didn't feel a thing with the local anaesthetic except painlessly being tugged and bashed about by the chap doing it, he wasn't especially gentle but it didn't hurt. He was involved in a nonstop and unrelated conversation with the other chap in the room to the point I hoped his attention was at least partly on what he was doing!

It's been fine so far, touch wood. Occasionally I've had a bit of hassle with it if they can't get blood return and a couple of times have had to go to get some substance on it for a couple of hours to clear any blockage. But that hasn't been a major problem. It's a bit weird granted, I'm thin so mine is very visible and palpable as I haven't enough fat in the area to conceal it. But I don't want chemo burning up my arm veins and this is the best solution for me. I have an ostomy also so I guess my ability to tolerate body weirdness had already been tested... To the many people who seem to have to do things to my torso I explain that it's a bit of an obstacle course! 😁

@balkanscot good luck this morning, we're all thinking of you.

How are things with you @LuciaPillson ?

@LuciaPillson thank you for sharing your port experience. Back home since just after lunchtime. It is kind of sore at the moment (the neck, not the chest) but I necked a couple of paracetamol, so hopefully that should take the edge off it for the time being. They left the plastic tube & needle in as I will be having my first dose of Paclitaxel tomorrow. I kind of wish it would settle in time for my next Pilates class which is in a week’s time. Although the nurse said it would be best to do exercise once the stitches come out after 10 days - it’s a mixture of dissolvable ones and non dissolvable. All the radiology staff were really nice, gave me some sedation as well (a bit of Midazolam) which was beautiful, as I felt really relaxed during the procedure. Even though I was shedding a few tears befoeehand. Just general tears of “fuck, what has my life become like??

@TwigTheWonderKid DS hasn’t twigged yet that I have a port now. I’ll tell him once he notices as I don’t plan on whipping my top up and saying look what I have got! I have been keeping him updated with everything. Haven’t told him that Capecitabine stopped working, just that I need a new medicine that doctors think may work a bit better. It’s this aspect of stage 4 that is killing me, trying to keep DS as settled as can be as he has really improved since DH’s death last year. He is working very hard at school and keeps bringing positive notes home - at least a couple or times a week. In the greater scheme of things I am not telling him any big lies, just trying to be as honest as possible but also quite vague at the same time as this stage 4 road is peppered with uncertainties.

Glad the port fitting went ok @balkanscot . I can definitely relate to the "fuck what has my life become" thing. I especially thought that as I was trying not to poo myself last week whilst waiting for my cardiology appointment and everything I find myself feeling grateful for something not being as bad as it could be.

It must be so hard balancing everything with your DS. Mine are older than yours at 14 and 18 and I try to be as honest as I can with them and also to try and work out what things they are worrying about that they are not telling me. Before Christmas I actually took them to the chemo unit for my PICC line flush. They both knew I had the line but hadn't seen it. It turns out it was much less scary than they thought and they also liked seeing where I was having my chemo and meeting the lovely nurses who look after me. However, in your circumstances, with such a recent bereavement I can understand you must be very keen to try and give him as much normality as possible.

@balkanscot @TwigTheWonderKid I also had a "fuck what has my life become" moment today, attending the oncology unit again, two years after I rang the bell to leave after chemo for primary BC. I also have a young child (7) who I worry about. We've also taken the approach of being honest but not sharing everything. It's hard to know if we're getting the balance right. We were wondering whether talking therapy might be good, but given that she believes me to just be recovering from a back operation we thought she might wonder why we were encouraging her to talk about something that is now in the past and twig that there is more than we're telling her.

I think with a 7 year old rationing information is the way to go. Like anything, if she asks you a direct question then I think careful honesty is the best approach but as it's early days in your stage 4 diagnosis it's probably rather inadvisable to give her too much info because so much is unknown.

My boys know I'm going to die, it was really important for me to be upfront with them about that. I lost my mum when I was 20 and my dad 2 years later and although I was legally an adult I really wasn't and it was incredibly hard because I was an only child and totally on my own. I guess if I'd been a few years younger I would have had more support. My mum died from lung cancer within 4 weeks of her diagnosis and my dad dropped down dead from a heart attack when he was taking our dog to the vets to be put down ( that was a fun day).

Anyway the point of that ramble is I really want to try and help my boys by preparing them as much as possible for a future without me whilst not wallowing in misery and still trying hard to enjoy being a family whilst we still can. No wonder I'm so bloody exhausted!

@TwigTheWonderKid It's so bloody hard isn't it.

It totally is and such a rollercoaster/ shifting sands/never knowing what's coming next situation. When I was first diagnosed in May it was a horrible shock. Then the wait to find out what, if any treatment, then I started chemo and then was hospitalised twice with an infection until they finally drained the 6 litres of infected fluid in my abdomen. But until they did that I was feeling so awful I thought I was dying. I spent all my time in hospital planning my funeral and compiling an excellent playlist for my wake.

Then I came out and apart from side effects from the chemo, I've been ok and I think we've kind of all gone back to not really believing I'm dying, especially my 14 yo.

But despite the denial and compartmentalisation, I still think a outfit a million times a day and we'll all have to face reality when I get the results of my next scan and find out what, if anything, is next for me. My 18 yo is super anxious about it and I can't pretend to him that I'm not because there's so much riding on the results.

And trying to parent them on top is so hard.

Puppies Cats
Key Lime Pie

Hello peeps. Hello @SewingBees . One of my cats is called Rosa. Love your pics. Sorry you're here, but I'm glad you have joined in.

@balkanscot well done lovely. I'm glad you had a nice sedative for the procedure. I am sending you snuggly blanket vibes.

I've not heard anything from the cyberknife team yet. Their meeting was either on Tuesday afternoon or yesterday, so hopefully they will send me a letter or call me soon. I hope you find out soon too @Tilllly

@TwigTheWonderKid Our children certainly have to grow up quicker than others don't they? I am sad for 20 year old Twig, I hope you had nice relatives and friends around you back then.

DS is 16 on Sunday. Today I bought him his first shaving set and some Paco Robanne 1million, as he said he smelled it in Boots and liked it! I'm currently being grateful I'm getting to see his 16th birthday. He is getting so handsome, and I am so proud of all he is becoming, inside and out.

Oops @TwigTheWonderKid cross posted.

You're all making me well up! 😢 I have a hard woman image to maintain you know

I see the brain man on 30th and go for the gamma knife the week after

CT scan is tomorrow and although my breathing is fine, sats at 99%, the pain isn't quite as well managed, so I'm worried it means the tumour is growing

Where is your pain @Tilllly ?

@Tilllly that's good news about the Gamma knife. Though just another example of how crazy the stuff you are grateful is when you have bloody cancer.

We all here for you. Including Smudge.

Left shoulder, right breast and very central in my chest
It's not excruciating, just feels less managed
Maybe cos I've a cold, the breast pain could be pulled muscle - I get that from coughing sometimes
Oncologist said let's wait for the CT scan results

Oh Smudge, you're sooooo pretty

@Tilllly do you ever get reflux? If so, could it be that?

Smudge says he knows he is ...

Ugh, I'm shattered but can't sleep. My body is tired and I'm sleep deprived but my brain won't turn off. So I decided to research ill health retirement which then led me into a Google rabbit hole about life expectancy, which then led to a vision of my 7 year old daughter at my funeral, scared and confused, without her mother to comfort her. This is all so hard at the moment. I'm struggling to find any positivity, which is unlike me.

I have a bone scan on Monday and a full body and brain CT on Tuesday. Started letrozol today, will start ribociclib on Monday. I'll just have to hope for good news at the next scan and positive signs that the medication is helping.

I'm forcing myself to keep putting one foot in front of the other - literally - and get my strength, mobility and stamina up. I walked the dogs today for the first time since early November and managed 6,000 steps in total today. Considering I couldn't walk at all 2 months ago that's fair progress, but there's a part of my brain whispering that there's no real point any more. I'm full of doom and gloom tonight, and even the prospect of the Traitors final tomorrow can't cheer me up.