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.

That's great news re lack of spread @Bearlyawake

@BitOfFun I've been thinking about you very much this week, to say you've had a time of it it too much of an understatement. Hope you're comfortable and treatment plans are afoot

One last thing to add re chemo - despite cold capping, my hair is coming out, I'm leaving a trail behind me round the house everywhere I go at the moment. I'm not sure how much I care, it'll grow back. I have an extremely comfy turban ready to wear at least.

Well, it turns out that the infection that put me in hospital for a week was pneumonia.

While I was in there though, I was scanned for all sorts, with MRIs and CTs.

Unfortunately, (and I haven't really told any of my friends yet apart from you here) as well as having some spread to my liver, I am basically riddled with secondaries, including to the brain. My biggest fear.

My bones are basically like honeycomb now too.

I hope that Fulvestrant will do something, but if it doesn't, then the is the bad part starting, I think.

I'm scared of losing my faculties, and perhaps saying things that aren't typical of me.

I'm just very, very scared...

@BitOfFun I wish I could do more than this, but I'm here xx

@BitOfFun Gutted to hear this. crossing all fingers for Fulvestrant to be effective. Sending my love to you.
❤️❤️❤️❤️❤️

Kentishmama if lanzoporazol doesn't kick in soon splitting your dose could be an option. As vile as the stuff is you can have gaviscon 2 hours after taking it. I had bad heart burn it eased after week one. Even though I'm finished chemo I'm still taking the lanzoporazol because I still take too many painkillers.
I've had my Ct today for radiotherapy to start next month im on the home straight fingers crossed.
I did read back from the last time I was here but my brain function isn't the greatest to remember who said what I'm sorry I need to borrow bloody Bridgets PA. Hope your pre op and op goes ok BTW I remembered that much

@BitOfFun I'm so sorry keeping my fingers crossed fulvestrant does what it needs to do

I can't start any new treatment until I've beaten this chest infection, so that's my first step. Thanks for your support- I don't know where I'd be without it.

@BitOfFun not surprised to see you are awake too. Sending you lots of love and a handhold. And, you know, if the brain mets should affect your behaviour, everyone who knows you would understand that, it wouldn't change how they thought of you.

@Bloodybridget yes bummer indeed! Genetic tests not covered by insurance or done here but any related treatment costs are (or at least have been). The BARD1 I understand can’t be passed to male heirs (I have sons) but still trying to get my head around the other one! DSs are in London and will need to get genetic tests.

@Lubballoo I can tell you I started out reading the June 2020 study by De Groot (university of Leiden) and then read the related medical research mentioned (though had read about Longo previously and viewed his mice on YouTube!). The research regarding mice is great - in humans still imo not enough trials. Please note I do NOT recommend anyone follow fasting (or fmd) during treatment unless like me are fully supported by their oncologist / medical team. My hair is nearly all gone too! Hat collection growing!

@BitOfFun crossing everything for beating the infection soon 💐

Positive vibes to everyone else too 🌴

@BitOfFun

I can't start any new treatment until I've beaten this chest infection, so that's my first step. Thanks for your support- I don't know where I'd be without it.

One step at a time then, one day at a time. One hour, minute, second at a time.

I have no wise words but we’re here with you.

@Bitoffun love and support to you xx

@BitOfFun Sending so much love. Hope your chest infection passes very soon - that's a very important first step. And then onwards.

@Bearlyawake that's fantastic news x

@BitOfFun - so sorry to hear that. Sending lots of love. Glad you are home now, and hopefully getting lots of support and comfort. Hoping the infection clears soon, and you can get on to the next step.

@Bearlyawake - great news!

Hope side effects ease off a bit today @KentishMama.

@Bearlyawake that does sound like it's going to be good news, I'm very pleased for you!
@InOtterNews steamed chips, WTAF?? How are you doing today?
I got back from pre-op a while ago. Was told that the surgeon's cheerful suggestion of getting out the day after surgery was very optimistic, it seems more likely I'll be in for two, three nights at best. Which is nothing at all compared to Otter, but I'm feeling very miserable about it - it's the no visitors thing. Definitely rethinking what I'll take with me - more snacks for a start, and it probably is worth lugging Hilary Mantel along.
Hope everyone is doing OK today.

@Bloodybridget take something lighter than Mantel - the constant interruptions don't aid reading

I'm ok. On liquid diet today - the mucositis has reached the top of my oesophagus. Every time I swallow I get hiccups and chewing food is a no-no. They're giving me morphine about an hour before my nutritional milkshake.

I'm feeling thoroughly pissed off and I'be only been here 10 days.

@InOtterNews really sorry to hear that. Is the liquid diet likely to need to last long? Hope not and hope pain is manageable too.

@Bloodybridget I've just finished The Mirror and the Light - got round the weighty tome issue by listening to it on Audible instead of reading it in case that's an option!

So, another day and another disappointment! I have chased up my consultant regarding my GP asking for her to refer me to ENT under the 2ww. I have had a response saying that if my GP feels that is the most appropriate route, my GP can refer me. I received the email at 1640 tonight, Friday, so pretty shitty timing.

I have contacted my GP Surgery and hoping that the duty Dr will get back to me tonight.

I feel let down by my Rheumatoid consultant. She has written in the referral that she suspects a malignancy. I just can't understand why she has not or will not refer me to ENT.

Back for a catch up and feeling very lucky here. Round four chemo this week I switched from FEC to doxatacel Herceptin and Perjeta and had a jolly six hours of infusions in a Bay with a crowd of fat bald ladies and a nice picnic lunch. I have had no side effects yet! The lady next to me took one for the team and had an allergic response so I dodged a bullet there. So much better than the FEC hangover from hell. I’m still waiting for trouble as I start filigrastim again tonight.
But compared to some I am trundling along quite mundanely getting jobs done at home. I handed in my notice at work to retire properly next March. Hooray!
Warm wishes to all.
@BitOfFun I feel for you. Hard to know what to say except keep on keeping on

@Lubballoo and @InOtterNews, I started reading HM in April, I think, and kept putting it aside for other books, so four months later I had read about a third! But I really want to finish it, I started again a couple of weeks ago and am now nearly two thirds through, so although it is unlikely that I'll manage it in hospital, I'll take it just in case. I never listen to audiobooks, they're not my thing. I will also have a supply of light reading!
Otter sorry about the muscositis symptoms sound very unpleasant. You must be full of so many different drugs, I guess it's impossible for all the side effects to be managed. My thoughts and sympathy are with you, and of course to @BitOfFun.
@Queenie8 very sorry you haven't got anywhere with the delayed appointment yet. My feeling is you should keep on pushing, although I know it's hard to do that repeatedly.
@TopOfTheCliff great that you were ok yesterday, hope you have had a good night and carry on feeling well. And congratulations on having retirement in view!
Hello and all good wishes to everyone else, it's a dark, rainy morning here. I developed a migraine yesterday afternoon which was very resistant to meds, and I still had a headache this morning, I wondered if it was the Covid test that triggered it, that swab went so far up my nose, it must have reached what I'm pleased to call my brain. I also got very sniffy and snotty, hope to god I'm not getting a cold, though as DP said, how would I have caught it?

@Bloodybridget Just wanted to wish you all the best for tomorrow. ❤️

@Queenie8. Hope you hear about an appt this week.

@InOtterNews. Hope your muscositis symptoms have eased and you can have some proper food.

@BitOfFun. Have antibiotics helped infection. Sending love to you.

I'm getting nervous myself about surgery. Got letter from hospital last week informing me of surgery stating that biopsies again showed precancerous but that as this is a large lesion 'there could be cancer within it' and therefore a much bigger op would be needed. Letter concluded 'let's wait and see'. I've been waiting since March 'to see' and the not knowing exactly had been hard. Although I'd been told all this to see it in black and white somehow made it more real. So I guess now it's time to know. Shitting it (literally will be Tuesday am) but just want to get this week over with. I'm very worried about waking up with a stoma but what will be will be right?

Sorry for going on. Thank you for letting me express here what I can't seem to in rl.

Catch up later in the week. Love to all of you. ❤️❤️❤️❤️❤️❤️❤️❤️😘

@Bloodybridget You might be in your way to the hospital or already there ,good luck today.
@Gilmoregirl I'm also getting nervous about surgery. I'm still waiting for a date and that's doing my head in and bloody shielding doesn't help. Seeing things written down in black and white makes everything seem more real and impossible.I met my surgeon and she very carefully explained the OP to me and after the consultation I was like 'yeah piece of piss I can handle this!'. Then the letter arrived and I thought ffuucckk ,that's a lot of surgery and I 've been quite down ever since.
I met with the stoma nurses on Friday and I found her really helpful ( their goody bags are crap though, a sample bag) she said in the scheme of things all the, horrible treatment, painful undignified investigations and terrible side effects the stoma is small fry. and it has helped to think of it that way.
Love to everyone today x

@Lizdeflores Thanks for this. You are so right about the grand scheme. I'm more settled today. Things seem worse at night when you can't sleep dont they. I'm Running round today trying to make sure everything is done at home before tomorrow. Hubby trying to tell me he and DD will be ok but it's keeping me occupied.

I hope that you get your surgery date soon hopefully it won't overlap on your birthday. 💕.

Hi everyone, all hanging in there?
I had my first of 4 oxyplatin ivs on Friday. The less said about that the better. Waiting for the oncologist to call me today but it’s almost 5pm here so that’s looking increasingly unlikely.
Not much to report in other words!

Hello all! Just popping in to thank people for good wishes, I had the op this morning as scheduled and so far, not to tempt fate, all has gone very well! Even daring to hope I might be discharged tomorrow. Staff are great. I'm in my third room .
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Am v dozy so won't try responding to others, but hope you're all doing ok.