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.

Oh dear! what a nightmare. It sounds as if your past medical history sent them off on a false scent. Did the RA consultant give any idea of what they thought it might be? From all the refs to thyroid and referral to an endocrinologist, I guess you're worrying about thyroid cancer? (I think lymphoma is usually treated in haematology.) If so, it's generally regarded as a 'good' one to get, but that's a bit of an oxymoron. No one wants any form of cancer.

I think in your position I'd be ringing my GP and asking for an urgent phone call to explain your results. That's what I did when my post-op path results came up with a different classification of my colon cancer tumour from what the CT had suggested. She was brilliant and also helped me when I was dithering about chemo.

It's a cliche on here, but you will feel better when you know what you're dealing with and have a treatment plan. And it's still only 'inconclusive'. My 'inconclusive' for an earlier problem turned out to be non-malignant, but I had to have surgery before they knew for sure.

This time tomorrow, fingers crossed, you'll have a better idea what you're dealing with, and when. In the meantime, hang on in there and keep in touch.

@Thymeout thank you for the reply, so sorry for what you are going through.

Initially my symptoms were being explained as lymphadenopathy. But the emergency appointment consultant was extremely thorough and he suggested the CT-PET scan. It was the CT-PET scan that picked up the thyroid issue, the nodule took up too much radiation. From what my rheumatoid consultant has said, it's likely thyroid cancer, 65-70% positive, as that's statistically the outcome.

I'm struggling being in limbo over the weekend. I had to tell my parents yesterday, as it was the first opportunity that I didn't have the DC. It was awful telling them.. Today is hard, trying to be upbeat with the DC, knowing that I have to chase up my appointment tomorrow - I hate making a fuss. But I need to be able to tell work when I need time off, and to arrange childcare - my parents will help me, my ex-husband is useless.

Thank you for the kind words.

@KentishMama - have you considered a fetching new corset?

@Queenie8 - sorry that you are here, but welcome

The early bit, right at the beginning when you don’t quite know what you’re up against, is one of the most stressful times there is, I’m glad your parents are rallying round.

I hope you get the time for your appointment sorted out. It’s bad enough without fighting an admin battle too!

@iVampire
Thank you, yes it's the not knowing, the waiting for an appointment to actually find out. Every other emergency appointment has been actioned the same day until now.

I'm very much an action plan person.

I’ve just come here for a rant. I’ve been admitted to hospital with same “can’t walk for the pain of it, and I’m losing my mind too and hearing and seeing things and not finding my words” that I had last time.

I somehow managed to pull a jug of water all over myself and the bed, and it was just the last straw, you know? I dissolved into really snotty sobs that you can’t easily stop,

I’m assuming it was a trained response to jolly me along, but.,,,

Nurse #1 “what are you crying for now?”

Nurse #2 came to the toilet with me, and I told her a bit about the cancer and feeling helpless at bloody everything, that I had kids and a husband and I was seeing the complete loss of dignity and pain that I’m due over the coming months as I start the inexorable slide into death (well, alright I didn’t put it quite like that), And She said...

“That must be very disconcerting”...

WELL DONE IN REMEMBERING WHAT THEY TAUGHT YOU AT THAT SHITE TRAINING SEMINAR, BUT IT’S A BIT FUCKING INADEQUATE, DON’T YOU THINK? FOR FUCK’S FUCKING SAKE

I’m sure it’s some measure they’ve introduced to combat compassion fatigue, but that lily-livered shite just makes everything worse, you knoe?

Absolutely, because it’s scary and it’s shit and it’s unfair and it’s all the bad things rolled into one and it’s not like you can escape how it’s messing with your body and your mind all at the same time.

It’s hugely unfair. It’s completely unjust, it’s rubbish to a level that words just can’t describe and you’re having to deal with it all.

Disconcerting is the feeling you get when you can’t remember if you locked the front door, or when you wake up in the night unsure if you heard a noise. It’s not being in hospital, really poorly, away from your family and worrying about everything. That’s not disconcerting, that’s just a slurry wagon of unfair shit.

Oh BOF it’s shit and there’s nothing I can say or do that would make it less shit. But I’m here and I hear you

Any idea how long you’ll be in for?

“disconcerting” my arse!

Sorry @BitOfFun that is ridiculously rubbish!

Do you have a new plan for next steps?

Yes @BitOfFun that’s just awful.

Some things are just really fucking shit. I know the nurse can’t say that but “that must be very disconcerting” is such an understatement that she might as well not have bothered.

It’s not much given everything you’re facing but you’ve always got us. I’m tapping away on my phone here in Amsterdam sending love and care to you over there. For whatever it’s worth, you’re not on your own

Thanks for the love and listening- I’m going to try and sleep now. Thank you so so much.

@Toofaroutallmylife The plan is to get some Fulvestrant in me on a Wednesday, then fortnightly at first moving to monthly, but I may very well still be stuck here in a totally different hospital .

@BitOfFun. You've got two Miss congeniality's on duty there haven't you? What a useless response. I hope you manage to get some sleep. Sending much love your way. ❤️❤️

Love from here too @BitOfFun. And shared outrage! Hope you manage some sleep xx

Oh @BitOfFun, that’s rubbish! Where’s their humanity? Sincerely hope you can sleep, and there are kinder nurses on the next shift. Love to you.

Sending love and very best wishes to @BitOfFun. I hope you do get some sleep, and have a better day tomorrow. It makes me so sad and angry that there are many HCPs who don't understand how important it is to be kind and sensitive.
Hello and welcome to @Queenie8, I hope you have an action plan very soon. As we all know here, waiting and uncertainty are very hard to cope with. Hoping for the best for you.
And of course sending warm thoughts to all of you having chemo and other demanding treatments, and/or battling with obstructive healthcare bureaucracy.

@BitOfFun Speechless, just speechless, at both nurses’ lack of anything, let alone empathy and care. I hope you had as peaceful night as you could. Thinking of you lots.

Chemo no. 4 in an hour. It’ll be my last EC, then I move onto 3 doses of carboplatin/dotexacel, yum! Just when I start feeling like I am a normal person again, I get another shot of poison to remind me that I am not. Spent the day yesterday baking and cooking like mad, knowing that I will be knocked down for six for this week.

Wishing everyone here a peaceful week. I am actually very proud of the whole gang here (sorry, getting all soppy now), love to you all ❤️

Morning all

@BitOfFun I'm sending you a big hug and I just want to sit here holding your hand while you cry as much as you need to cry.

Sorry for the silence, the chemo has really taken its toll over the weekend. Friday night started with temperature spikes of 40, and then crippling migraine through the night. They started the standard protocol for blood cancer (blood cultures, antibiotics etc) - when I went for an x-ray on Saturday I passed out - thankfully I was already in a wheelchair so didn't have far to slump. The rest of the weekend has gone a similar way. They gave me morphine for the headache which was nice

Overnight I was on 3 different IVs - all of them finished at different times, coupled with observations, I don't think I've had more than a solid hour at a time. So my biggest problem is sleep.

Today is Day -1 - so one more chemo (it's going to be crappy) and then transplant tomorrow.

God, @InOtterNews, you are going through it. I hope your nurses are a bit more empathetic than BitOfFun's! Migraine on top of everything else, ghastly. I wonder if it was triggered by a drug, or just lack of sleep? A bih hug to you, and wishes for better times.
@balkanscot hope you don't feel too dreadful after today's chemo. I guess you won't feel like enjoy the fruits of yesterday's labours .
Waving at everyone else here. I just emailed the lung surgeon's secretary to ask if she has any idea of when I'll go in. Ridiculously hard to do that, somehow I didn't get a good vibe from her when I emailed once before and I have this image of her finding me a nuisance and putting me to the bottom of the list! Mad, eh?

@Bloodybridget. Hope you get word soon on surgery. That's exactly how I felt when ringing to see where things were. Why do we feel we are being a bother to Health professionals.

@InOtterNews sending hug to you. Be thinking of you tomorrow.
@balkanscot. Also hug to you.

I'll give you all wee laugh. Yesterday was lovely day and spent it in garden (as I can't go anywhere else). Went to go down a small embankment in field beside us to feed our horse was wearing a worn out pair of crocs and slipped and fell straight into patch of nettles. Legs in air akimbo. Never got up as fast from anything in my life. Stung everywhere. Dogs and horse looked at me as if WTF. I'm still tingling today and not in a good way. Lol.

Take care everyone. Xxxx

@InOtterNews tomorrow is the start of the second coming! It is rotten you have to go through all this other crap to get there but you WILL. I am keeping everything crossed for you for tomorrow. You will be in my thoughts.

@Bloodybridget Yes, I am already feeling (not envy). I know what you mean about the vibes. But they are there (including the secretary), to help you and answer your questions. Hopefully you’ll get the answer soon. I have appt. with my oncologist on Friday to discuss the ultrasound I had earlier this afternoon. I cried (again!) during the ultrasound, just thinking what if there is no progress, what if there are new lumps on top of the old one, what if, what if... My husband keeps telling me that there is no way the lump is still the same or bigger as the chemo has had an onslaught effect on my (otherwise healthy) body. Well, I’ll believe it when I see it.

@gillmoregirl oops! Did you put any antihistamine cream to ease the stings? My mum used to forage for nettles and then cook them and eat them. I know they are supposed to be good for you but...

Off to hibernate and feel crappy.

@balkanscot crossing fingers for very good results for you on Friday. What was that band called, Tears for Fears? How apt for all of us.
@gillmoregirl I'm not laughing at the idea of you falling into a patch of nettles! It's happened to me, ouch ouch! Tell us about your horse please!

@Gilmore girl Sorry to laugh at your discomfort but I think you have just given me my first laugh all day, nothing good comes from wearing crocs!
@BitOfFun your nurses sound awful and make me despair for the future .
I've had a very tearful day the enormity of the op and recovery afterwards has knocked me for six today.

@balkanscot. I think your hubby is making good sense about ultrasound.

In terms of nettle stings think my pride was hurt more.

@Bloodybridget I'm the stablehand really. DD and DH ride. I get all the other glamorous jobs like shit lifting especially when DH was working abroad (home now all the time due to Covid). I have become very fond of him though. (The horse I mean!) 😉

Just back from hospital to give blood prior to next weeks surgery. Pharmacy also rang to arrange covid test and to collect two enemas both which I need to self administer morning of surgery. Admission. Time 7.30 so it'll be early one. I'm a little worried that covid in some way will impact this. As you all know I've had so many delays I don't think I could cope with cancellation. I really have become a worry worm.

@Lizdeflores. Have you received any date yet? No wonder you're tearful. It's not a walk in the park your going through but a step towards your recovery. I try to tell myself that often. ❤️