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

[LemonDrizzle10]

Old thread nearly full!

@EachandEveryone hi sorry, that sounds sooo triggering.

I'm a similar position just finished chemo, had MRI this week, surgeons appointment has been cancelled. They need pet scan and uss of nodes as need to clear up a couple of things. Obviously it's not fine, and I think my tumour has decreased in size but still on the lardy side. Its always the waiting and not knowing ... And feeling so out of control that does my head in.

Oh I had a little giggle at Triggered it’s not a word I ever use without thinking of Ricky Gervais (you had to be there) but yes, that’s exactly what it was.
where are your nodes? Mine are pelvic and I can still feel them. I’m also concerned about the gathering of abdo fluid which is more than it used to be. I’m telling myself it’s too much salt and not enough movement.

@Tilllly glad immunotherapy is going OK, haven't heard about my brain scan results yet, will find out next week I assume.

Have OH telephone meeting in a couple of weeks as I want to retire on ill health. Never had an OH referral- any suggestions as to how to make it go the way I want it to?

@EachandEveryone axilla ,I've got through the chemo I think by creating comedy moments, like falling over a drip stand, falling out of chair, chair breaking or sticking in an unreasonable position so need pillows a plenty. It went on...I was so busy in comedy that mentally I avoided why I was there!

@EachandEveryone I vE just bought a big tub of the "green "Maldon salt flakes , deffo the only thing I'm hankering for currently

Waiting is a bitch

WHY did I think walking back from church was a good idea....
🥶 🥱

Do you work for the NHS? I am not going for it I’m going to take partial retirement but when I saw the OH consultant she would do anything for me much more compassionate that the nurses😀😀

can you ask for a face to face?

@Whatevershallidowithmylife I've only really engaged with OH from an employer's perspective but I would suggest you firstly write down all of the demands your job makes on you - physically and mentally - including the impact of your commute and other related stressors such as impacts on life outside of work/reduced time to do what you need to do for family life and your own care.

Secondly write down how your illness and any medications affect you, including small/occasional things because they will want to understand the cumulative impact. As well as symptoms think about all the time you need for medical appointments - phone and in person, and include travel time and any time you need after an appointment to mentally recover.

Then be prepared to share all that information honestly (OH consultations are confidential) and don't be afraid to lay it on thick. You might also want to talk about what the future looks like too - will things get worse/more difficult in the short term?

Check with them what they will be sharing with your employer. It should only be an assessment as to whether you can work your job without adjustments, whether you could do it with adjustments (and detail what those would need to be) or whether they support your desire to retire on ill health grounds. But I believe it's not up to the employer to decide whether you can retire with ill health, it's the employee's choice. But I'm not certain on that last point.

@EachandEveryone not NHS but it is LGPS. I'm already p/t as haven't been fit enough for f/t for quite a few years.
@SewingBees that's great advice thank you. My work would be happy to have me back but will support me if I do want/need/am able to retire.
My surgeon, oncologist and GP are all supportive of me being able to retire too so I guess that's good.

Well it’s all over now. I have a new hip in a new and better place. I’ll be partial weight bearing for six weeks which is a pain but it went well. I have taken all the drugs offered and am floating on a cloud while my calves are being pumped every two minutes. I’ve eaten lots and been out for a wee.
Thanks @KentishMama and others for your kind wishes. And now back to the @Tilllly show 😂

@Shityshitybangbang I recommend learning yoga breathing and visualisations. It gets me through, although I was quite scared of the spinal set up today. Maybe ask for help now from a psychologist. The cancer unit will have one. Sending hugs x

@Whatevershallidowithmylife
I've just been given ill health retirement, if I can help?
I was lucky to benefit from a very supportive HR officer - if your HR lead agrees with you, that will help a lot. As will TU support if you're in one. Are you covered under DDE?

Basically you have to demonstrate you'll never be well enough to work, before normal pension age. Not just your current job but any work
LGPS will require your doctor to report that, then you see your OHU and then an independent doctor

You do have to talk about your worst days - obv don't lie but this is no time to be stoic. If your condition is erratic- if you have v bad days without warning or reason, all the better

Be aware tho, ill health retirement has different tiers so they can retire you on a partial pension. Read up on your policy

Ooh @TopOfTheCliff, is the pain under control? I laughed when you said you'd been out for a wee - like a dog?!?

Appreciate all you've been thru but I walked in the cold. Can we focus on real suffering please...? 😁

#itsallaboutme

@Tilllly I am in no pain but wide awake at 4am. A nice nurse came to give me some IV antibiotics so I entertained her with my ghastly medical history. She understood why I was making light of a mere injection of harmless meds. I realised that the grinding pain in my bum I have been ignoring for several years has actually gone. Cue joke about XH?
Of course I took the lift down to the car park and peed in a bush. As one does.

Where are you? Shetland? It was warm here today and sunny! I hope you thawed out. At least I appreciate your bravery even if nobody else does.

I’ve just remembered I packed some snacks. I wonder if I can reach them with my grabber!
Top x

I pop into the happy place cafe most nights, that 4am awakening is rubbish but Sashh keeps us entertained

Yorkshire. It was sunny but that wind 🥶 but I got my steps in

Glad you are pain free ☺️👍 💃🏼
What nibbles have you got?

@Tillly there is a bag of Caramelised pecans on the other side of the room…
I will retrieve them as a reward for my next toilet trip.

This time last week I was told the words, you have cancer. Still a bit stunned and upside down. Will read through the rest of the thread shortly. My heart aches for everyone going through this.

@PissOffCancer sorry you have had to join us but you'll find lots of support here.

You're at the stage where it's still a massive shock and presumably you are still waiting to find out what treatment you'll be having. It will feel better once you have a plan. In the meantime, we are all here for you.

@Tilllly does visiting the Happy Place Cafe not make you extraordinarily hungry though?

@TopOfTheCliff glad to see your op went well. Does it feel...different? (I'm not entirely sure the word I want is "different", but it'll do).

@Tilllly I'm in Yorkshire too. We were out playing in the wind yesterday morning...it was blowing me about, never mind the tiny 3yo's 🤣

@PissOffCancer hello 👋 welcome to the thread none of us wants to be on. You'll find the most supportive bunch though & between us we've been through a lot (some much more than others) so can share experiences with you as you go. Stay away from Dr. Google! & prepare to have your mind blown when this lot talk science 🤯 unless you're science minded.

My right arm's still feeling weird after the contrast for the CT just over a week ago. Not painful or sore...just a bit not right. Can still do everything I normally would though. Not sure whether I should be telling anyone, or not 🤷‍♀️

Off to The Range today - I want a new bin and washing up bowl to match the dish drainer, exciting eh?🤣 Will no doubt end up in the craft section & find something Valentines or Easter related. Ooooh...corkscrew! I want a corkscrew so I can drink the bottle of red that has been tormenting me for weeks! Goodness knows where I've put the old one 🤔

Going to get dd1's birthday piercing too - I am tempted to have my left diath but not sure that's a good idea since you have to remove for scans & it takes 9mo to heal. Shall google before heading for the bus...see if I can find one I fancy instead that doesn't take as long!

@TwigTheWonderKid thanks, my head is spinning a bit to say the least.

Very glad to hear from you, @TopOfTheCliff , even though 4 am is not an ideal time to be awake. I hope you've managed to retrieve the snacks by now! Knowing that they are there, but just outside your reach - what torture!!!

@lucysmam Forget the corkscrew and the piercing. Did you end up buying the shoes? Or did I miss that very important update?

@PissOffCancer I'm so sorry you're joining us here. Would you like to tell us a bit more? What kind of cancer do you have? I'm mainly asking because there's quite a variety of them here on the thread, so with a bit of luck, we'll have someone with experience in your specific kind of shit show. The early days are definitely the most head-spinning ones, so if you have any questions, just shout!

@KentishMama I didn't - purely because I already have 2 pairs of sparkly boots & will only ever wear one, once, for our Eras Tour night.

Oh @lucysmam ! That's a disappointment! I'm thinking that after having cancer twice, I should be wearing sparkly boots every day. Just on the school run, paired with jeans. But the only sparkly shoes I own right now are pointy velvet pumps with a star and moon embroidery, and they just aren't hitting the mark.
I need a shoe shopping trip when I'm better, clearly. Selfridges, I think. Hmm.