Cancer Support Thread 92 - Christmas Happy Hour at the Patience Inn 7pm tonight 🎄

[LemonDrizzle10]

Old thread nearly full!

Nearly forgot - my right eyebrow seems to be vacating my face again for whatever reason 🤷‍♀️

Thank you everyone, it is a shock. And so very very sad
Bastard bastard disease

Honestly @lucysmam I don't understand why these appts can't be more straightforward
Or why they don't ring when they say. It must drive you mad.

My oncologist rang yesterday- he was just confirming the gamma knife date was next week as system showed this week still, so he'd have to change my chemo. So no big deal. But I hear his voice and think, now what...? I thought the CT was back early with something horrific

So the cough I've had (and flagged) since after Christmas was not, in fact, an infection or post - viral thing but lung inflammation from Everolimus. Now on 6 week course of steroids to clear it and then we will see. I guess that explains my complete lack of energy the last few weeks - who knew oxygen was so important to daily human functioning? A bit annoyed that after all the warnings to let team know about any dry cough no matter how minor, that just because I was expectorating mucous it was somewhat disregarded, even though inflammation numbers and some other blood work was off in Jan and Dec suggesting inflammation.... somewhere.

Anyone have any suggestions as to how to keep a picc line for longer than two months (this is the longest for me)? Am I nit using the arm enough / too much or is it just my crappy veins?

What's going wrong with it @Whatevershallidowithmylife ? I've had mine in since October with no problem. I've almost forgotten it's there and just use my arm as normal.

@Whatevershallidowithmylife how often is your PICC flushed? And is it clogging? Maybe it needs doing more often. I had one with my first chemo in 2020 until it was wrenched out somewhere on the orthopaedic ward after I dislocated my ankle. (I was high on morphine and didn’t notice until a day later.) I just made do with an IV for the last round of chemo. Second time through I had a port which was less trouble but still got clogged occasionally and had to be flushed.

@HerbalRefreshmentt sorry to hear about your lungs. Will you need to change your treatment?

I am finding being immobile quite annoying but time is passing pleasantly enough. Just five weeks to go then I can start moving again 🙄 Luckily it’s not too painful.

@Tilllly Absolutely terrible news about your colleague, that must have been incredibly hard to hear today. Yikes. I hate this fucking disease so much!

I am almost scared to share this as it's a very 'privileged' update. But I am switching back to private treatment now after my big surgery, and the scheduling is a dream. Referral letter at 11 am yesterday morning. Phone call from medical secretary to schedule at 2 pm. Appointment at a clinic that's super easy to get to next Thursday, at a slightly inconvenient time, but I accepted. Another call today: Do I want to swap to an earlier time so I can be back home for school pickup? Another patient would prefer my later slot. Yes, please. Sorted! 😎

Bad news of the day, I spent 3 hours in A&E with DS8, who is limping and has hip pain. Had x-rays. Nothing bone related, probably an inflammation in the joint (transient synovitis). Rest and ibuprofen. Could take him to specialist paediatric A&E at another hospital for more tests, but I think we'll try resting first. He's on the sofa with his tablet, enjoying screen time. And I had a three hour nap after that hospital trip... Still so exhausted!

@KentishMama I'd go private if I could afford it! That type of scheduling is the thing of dreams 😍 I hope rest works for your ds 🤞

I had a nice chat with dd2's HOY earlier, after another teacher had a catch up in the corridor about how things are & it was a bit too public for her liking. Hearts are in the right place, but they're missing the mark a bit with just how much dd2 wants to chat about it at school. He's a very nice chap, imo, & has said that they'll leave her to it but she's welcome to go and offload on him if she needs/wants to.

Highlight of the day was selling a brand new item on Vinted for £25! I was only going to list it for a fiver but then looked what others of the same go for! Dd1's Taylor Swift merch is well and truly paid for - any further Vinted sales will be for dd2 to get something she fancies.

No joy with dental hospital reception manager - will ring again tomorrow 🙄🙄

@TwigTheWonderKid @TopOfTheCliff I'm getting my new line tomorrow or Friday and it gets flushed weekly. My first one lasted two months but seemed to 'come out' half a cm or so every week then just stopped working. I am seriously bad at needles and veins just collapse now so canulas aren't any good.

Doles of my feet are itchy, esp at night

Is this chemo related?

Help! I washed my hair this morning, and something felt odd at the back of my head - I have an oval bald spot, at least an inch in diameter! I had noticed quite a bit of hair shedding, but to have a bald spot! Alopecia? It's bringing back all sorts of chemo memories, and I really don't need another drama in my life!
Do I need a dermatologist for this? Can it be treated? Does anyone have experience with this?

No idea but a quick advice source might be your hairdresser

Mines been very knowledgeable

@KentishMama

https://www.bad.org.uk/pils/alopecia-areata/

Could be this

Ffs! Fave colleague seemed a bit off yesterday so messaged last night to see if she's ok. She's been referred for investigation for bowel cancer 😢 She's been pushing for something since I was ill at the beginning of last year. Fingers crossed it's nothing serious 🤞

@TopOfTheCliff tbd on treatment, I'm awaiting a CT early next week to get a grasp as to the level of this. This treatment must have been doing something as my tumor markers were coming down substantially, but its come at quite the cost. So we will see.

Picc line successfully in - immunotherapy starts tomorrow!

Fingers crossed @lucysmam

Result @Whatevershallidowithmylife

I'm having a baaaad night here!

Got roundly slammed on a thread I started
Then DH just broke the loo in the hotel and we've had to pack up and move rooms

And the itchy feet is now pins and needles all the way up my legs

This is not the relaxing break I planned

Sorry @Tilllly that sucks.

I am arguing with DH tonight. A white feather has been floating round the outside of our house today. I told him it is angels guarding us. He says we have a dead seagull on the roof. Who is right?

He is a bit stressed because his DM90 is sick and she is the career for DF90 and he cant/ won’t leave me to look after them both. He needs it to be his guardian angel!

@TopOfTheCliff Your comment about the feather made me laugh. I think you’re right and your DH is just being a bit too male brain!

@Tilllly Sorry things are a bit rubbish. Hope they get better soon.

@TopOfTheCliff

Well I agree with your DH but I'd not tell him that!

@KentishMama
You ok? Are you going to speak to hairdresser / doctor / pigeon on roof today, see what's going on? I hope it's just a temporary blip.

Have you got a photo at the back, is it visible or covered by other hair?
Hopefully it's a one off and will just grow back

I'm laid awake, pins and needles / itching in arms and legs, listening to DH sleeping peacefully....
I've taken an antihistamine- I was trying not to cos you don't know when you're on other drugs but it looked ok. Anyway, it's not even helped
Irritating

I had a night in a hotel in Covent Garden. I was meant to be treated by my gorgeous cousin and sadly her kids both got a big and she couldn’t come so I was on my own. I mean it was no hassle for me but I felt for her.

im psyching myself up for a challenging week at work. My manager doesn’t think I can put in for partial retirement as I am still on phased return! It’s not true at all.

Well @Tilllly you may have to admit you were wrong. In the night DMIL called DH and when he got there she passed away in his arms. The angels were clearly there for a reason. We are in shock. It will take a bit of time to decide what to do next with DFIL. We are all being kind to each other.

@EachandEveryone you know you have to channel your invisible army of supporters in dealing with your manager. I’d be parroting “I will be discussing this with HR/ OT / big boss” and not let Manager think it’s their decision.

I’ve got vertigo and tinnitus today and was sick earlier. I’m lying low to stay out of trouble.

Oh @TopOfTheCliff I'm so sorry
How very sad
I'm glad he was there tho

How're you holding up?