Cancer support thread # 75 - come on in!

[Bloodybridget]

This is the new thread for anyone at any stage of cancer, from noticing a possibly warning sign, through tests and scans, diagnosis, treatment and beyond. Come on in for advice, sympathy and support.
The last thread is here.

If you've been on a previous thread, please come and say hello and introduce yourself!

If you are a relative or friend of someone with cancer and looking for support, there are other threads on this topic - this one is for cancer patients ourselves.

Hi all
They haven't got a bed for me yet. Got to call King's again at 7.30, so for now I have to put up with the crippling anxiety a little longer.

If no bed tonight I have to go for 8.30 in the morning.

And due to the law of sod, I've stripped my bed and washed my pillows. Better go and cop a feel

@Starmer you're so kind. I'm taking my laptop in with me so I can stay in touch.

@InOtterNews hope you got admitted tonight and that the crippling anxiety has eased off a bit. I am thinking of you! It’s like a form of rebirth, isn’t it (just slap me if I get on your nerves with this type of speak)? Fingers crossed that your cancer starts seriously buggering off from now on.

@Bloodybridget I have got some Brora cashmere berets and some lovely woolly hats from my favourite (Hilary Grant). I made a right mess of my wig this morning in time for work Zoom meeting, no idea what went wrong there but I looked so obviously “wrong” (fringe all over the place and me trying to casually “fix” it during the meeting).
Well done on your rowing! I attempted to hoover two rooms yesterday and just about passed out from exhaustion!

I think I have developed thrush down under. FFS! If it’s not the mouth ulcers, motherf**er of all heartburns, liver/neutrophils going all over the place, and now bloody thrush!

Wishing everyone a peaceful night and new strength for tomorrow to keep on going and blast the motherf*ing cancer off! (Sorry, got carried away here ) Thinking of your all.

@InOtterNews I wonder if you got into hospital last night, or if you're on your way there now - sending as always very good wishes and a big virtual hug.

@balkanscot your hats sound gorgeous, but the wig story made me laugh! Nice of you to be impressed by rowing, but remember I am coming up for 11 months since the end of chemo, and it's a short distance!

Hopefully you're now being looked after in hospital @InOtterNews.

No good news from me I'm afraid. All my appointments yesterday were cancelled as the hospital has decided not to treat me, but somehow failed to make this clear by, for example, making a phone call. I have no idea what's going on, and today my GP called me to ask me what's going on.

I feel very scared simply because I feel completely unsupported by these health care so-called professionals. The treatment is meant to be fairly straightforward but the left hand has no idea what the right hand is doing. I got a hard time from the GP today because everything is apparently being delayed for too long. Needless to say, none of it is my doing.

I'm upset, frustrated and angry that I'm being forced to invest so much energy in dealing with disorganised (to put it politely) people. I know I'll feel better again in a few days but right now I feel really hopeless and like nobody actually knows what they're doing.

It's been such a mind fuck that this morning I actually caught myself wondering whether I had somehow dreamed up the whole conversation with the (other) GP and made the referral to the 'new' hospital myself! Obviously I can't have done, only a doctor can refer you, but it's really making me a bit crazy. I have a letter here in black and white from the 'new' hospital with the appointment times, but yesterday they were like, 12:30? No... you don't have an appointment then, what are you on about? type thing.

Anyway, thanks for letting me vent! Onwards, ever onwards.

I should clarify: 'hospital has decided not to treat me' means the new hospital to which I was referred. The 'old' hospital is still ready and waiting to treat me. A GP had suggested I change hospitals due to issues with that horrible nurse. Now I'm being looked at as if it was all my idea!

Well I'm here but still without a bed. Came in early for Hickman line insertion and PICC removal. Now I'm just hanging around the chemo suite waiting for a bed.

3 discharges due today and the bed manager tells me I'm 2nd in line. So let's hope there aren't any emergencies in the meantime

@balkanscot I'm referring to it as the second coming or resurrection 😄 (my very catholic grandmother would be turning in her grave)

Lot, Otter . I hope you get a bed soon. Give us a shout if you need reading recs!

@LucyWarlowsRightHand that is so rubbish, I'm really sorry. Can't imagine how it happened and hope someone takes the rap.
@InOtterNews they'll have to find you a bed some time soon! Not as though they didn't know you were coming . .

Well fuckity fuck fuck!

No bed for tonight.

@InOtterNews wtf? What do they think they’re doing?!?

@LucyWarlowsRightHand I'm trying to be all zen. It's a transplant ward so they can't kick people out who are vulnerable. It could be me in a few weeks, and I'd be devastated if I thought I was being kicked out when at risk. I'm currently not at risk (compared to when I'm having active treatment)

That said, I didn't get a bed last night, I've been here since 8am. So now I have find someone to collect me in rush hour.

Fair enough of course, but it doesn’t mean you have to like it! Some things are just crap (for everyone obviously, I’m sure there are patients who’d love to be ready for discharge) and that’s the way it is. I guess that’s Zen actually!
though I don’t know if you’re allowed them on the transplant ward

Just a quick hello, and sorry for the radio silence! I've been keeping busy in the little lull between surgery and chemo, but that break is coming to an end... I'm having a port fitted on Friday, and then chemo starts on Monday! URGH!

I'll have 4x EC (dose dense, so every 2 weeks), and then 4x Paclitaxel (also dose dense every 2 weeks). So if I can scrape through without delays (which sounds kind of unlikely, but one can hope...), then I'm done with chemo just this side of the new year and can enter 2021 with just a little bit of radiotherapy hanging over me...

Still waiting for BRCA test results, but my head is firmly in the sand with regards to that one until the results are here. Frankly, I'm not sure I can cope with another round of bad news, so they had better come back clear.

@InOtterNews - let me just echo LucyWarlowsRightHand. WTF?

@LucyWarlowsRightHand - I really want to bang a few heads together on your behalf, so if you could kindly supply names, I will get to work for you right away.

@BitOfFun I am sending you lots of love, and hope that you get the best possible response to whatever treatment they throw at you. You've got this.

Sending all my best to the rest of you wonderful ladies - but have to cut this short as my five-year old is apparently STARVING and will PERISH if I don't feed him RIGHT NOW!

Can we all say a big WTAF together.

They've just called - I have been home for 20 mins - to say they've got me a bay for tonight and to go back at 10pm.

They'll find me a side room in the morning

Kerrist, what a palaver!

@KentishMama, thank you so much- it means a lot to find so much love and support here when you are going through so much yourselves. You are amazing.

@InOtterNews
You can have a big WTAF from me.You deserve A+. treatment from now on, a mint on your pillow and a fully stocked minibar.
Seriously best of luck I will be thinking of you x

^ What @Lizdeflores said.

@InOtterNews

Can we all say a big WTAF together.

They've just called - I have been home for 20 mins - to say they've got me a bay for tonight and to go back at 10pm.

They'll find me a side room in the morning

Life loves its little jokes, doesn’t it

Definitely WTAFworthy! Sleep well when you eventually get settled.

Fucking hell @InOtterNews that is bloody awful. What a peaceful, calming start to your hospital stay, NOT.
@Kentishmama nice to see you, hope you managed to save your poor starving DS from expiring! Don't pin your hopes too firmly on getting through chemo without delays . . But it will come to an end.
I just showed DP my list of questions for the phone appointment tomorrow. Trying to manage my expectations in case they don't give me a date for surgery, that's what I want most.

@LucyWarlowsRightHand what a bunch of tossers at that hospital that denies all knowledge of you! I hope they get their act together, they have a duty of care. Argh! When wrangling with this cancer bastard this kind of incompetence is the last thing you need. Lots of and .

@InOtterNews what a ping pong re: bed availability! Have you now finally been admitted? I second your second coming, too!

Waving to @KentishMama! I have my last session of EC next Monday (4 doses in total), followed by 3 sessions of dotexacel and paclitaxel. EC has been pretty brutal so far but they did warn me they deliberately set my chemotherapy to be as aggressive as it can be (slim, no underlying health conditions, relatively young at 48). So far I have only had 1 slight delay due to low neutrophil count. And my latest (3rd) dose of EC was not as strong due to my liver playing up. Let us know how you get on. My BRCA test results arrived at the worst possible time - a day before my lumpectomy (BRCA 2 positive, sadly), so the medical team had to do some last minute changes to my long-term medical plans. Fingers crossed you’ll get a negative result.

Just booked a slot at a local pumpkin patch. Fuck it, I haven’t been anywhere since March that’s more than 5 miles away, so pumpkin picking knee-deep in the countryside mud will feel like traipsing down the Metropolitan Museum!

Hi everyone. Lots of happenings with you all since I last lurked. @Bloodybridget good luck with your telephone consultation today. I hope you get date for surgery if not today then soon. @InOtterNews hope you've now been admitted. What a run around! Like the idea of fully stocked mini bar @Lizdeflores If only. 😂. @LucyWarlowsRightHand what a ridiculous situation for you. Any wonder you are cross Will you stay at original hospital? @BitOfFun how are you? Forgive me if I've missed it hit have you been given a date for starting your treatment

Nothing new from me apart from pre assessment phone calls, appts for pre surgery bloods and covid swabs!

Best wishes to everyone. 😘

Thanks @gillmoregirl - I had the phone call, surgeon was v nice. No date yet but should be within the next two weeks, nodule is in middle lobe of right lung, should be keyhole and maybe only one night in hospital. Worst thing was he said v casually that it's almost certainly a metastasis - in his world, not primary lung cancer is good!
Also DP and I have to self isolate from now - although we decided we'd start tomorrow.

@Bloodybridget that sounds somewhat promising? I mean, everything’s difficult when you’re the one who’s going through it, but it sounds doable? How are you feeling about it?

Well the less said about my situation the better, it’s too exhausting. ExH spent the afternoon on the phone and believes he made progress in getting people to talk to each other.

In other news, a lovely school mum friend came over this morning (her day off) and spent a few hours cleaning and tidying my house, vacuuming, putting the shopping away, then took out the rubbish and the recycling. So that was absolutely amazing and it’s so lovely and clean downstairs.

@gillmoregirl yes I will be staying at the original hospital apparently. I need chemotherapy and they’re happy to treat me, so... 🤷‍♀️

I have a friend who’s a health care professional working with cancer patients and I have an appointment with her tomorrow. She’s already given me lots of advice and will be advising me further tomorrow. In turn I’m in a position to help her out by acting as a case study for her, which I’m very happy to do (and I think there’s a lot to learn from my experience!) I think I would be in despair if I didn’t have her; I think ExH has managed to get control today but if there are further problems she’s able to call doctors as a colleague and as such has a lot more leverage.

Lucy, what wonderful friends! That is so good to hear!

*gilmoregirl, thanks for asking- I'm due to start my new treatment on the 23rd, so next week (I think!)

My mum is taking me to get my hair blow dried again tomorrow- the hairdresser is a lovely warm and funny woman, and is a former pupil of many years ago at the school mum taught at. We all have a good chat and laugh a lot- it's a bit Steel Magnolias .

Love to everyone on the thread