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.

Hello @ViveLEntenteCordiale - I’m not currently in the U.K. and I am about a month ahead of you - but hopefully your results will be different to mine. @Bloodybridget is right the waiting can be quite emotional.

My experience regarding dealing with insurance cover rather than the NHS has been ok - though rather bizarrely I was contacted by the admin department to pay the excess required for some tests on the removed lumps! This was about 20 hours post op - so I was at the hospital. I asked if they could send someone up to take the payment - they suggested DH stop by before visiting so as not to disturb me and were happy to take cash! All very polite and have had no hassle with insurance cover so far!

It’s 4 in the morning here and it is lovely to be home - even if I do smell like a Chinese takeaway (sesame oil based scar cream which my doctor says I must get used to!).

Congratulations on getting home, @ElaineMarieBenes! Sesame oil, yum!

Thanks for the welcome @Bloodybridget and @ElaineMarieBenes! Good to meet someone to share the health insurance trials with Elaine... it's bizarre the things they won't pay for and even more bizarre that the hospital was chasing for it when you're still inpatient! Glad to hear you are home and hope you recover well from your op. If you end up with a nice barely visible scar the sesame smell will be worth it!

I am constantly wavering between 'it's all a fuss about nothing', 'it's bound to be bad news' and 'Just wish I knew either way'... exhausting!

Hi all, I had my first chemo on Tuesday it went well and I felt fine on day 1&2 but now the pain and fatigue has it me. Hard to manage with a 7 year old charging round the house, luckily
summer club starts next week.
@balkanscot a hand hold for you waiting for investigations and result is awful I hope your weekend can be as restful as possible x
@Bloodybridget glad to hear that you are getting some news on your surgery date
To all those waiting for investigations,result and recovering from surgery much love xxx

Hi everyone

The euphoria of Friday's remission convo has worn off. Back to earth with a bump today.

Have been at hospital all day since 8.30am having back to back tests and meeting transplant team.

I'm basically starting to prepare for stem cell harvest immediately when my official final chemo finishes next week. This means the highest dose of GCSF injections for 10 days. And a shit load of pain.

Then stem cell harvest for 2 days.

Best case for transplant is 4 weeks in hospital. They're giving me BEAM therapy for a week. The A in the BEAM is the chemo drug that makes me so ill. Doctor didn't sugar coat how unwell this therapy will make me.l (feeding tubes were mentioned). The rest of my time will be being ill and waiting for my immune system to recover.

Day of transplant is Day Zero - 3 months after I will need all my childhood immunisations again.

Dr also it will be 6 months to a year before I can return to normal life. Maintenance for a couple years. But then I could be clear for 10 years.

Part of me is fascinated by the whole thing in a science fiction kind of way. Part of me is horrified for the next few months. Part of me feels bad that I'm having a moan about it all when so many people have it much worse.

I'm trying to view it as short term pain for long term pain. Hopefully by the time I go again they'll have found a cure/kinder treatment

P.S. I'm thinking of you all whether you're undergoing treatment or waiting on results. Sending you all good vibes

Oh good grief, Otter, that sounds HORRENDOUS. I'm so sorry. Can you set up some sort of talking therapy via Macmillan or similar, so you've got some support while you are going through it all?

Hells bells @InOtterNews, that will be a very tough time for you, I'm sorry you have to go through it. BitOfFun's suggestion re talking therapy sounds very sensible - especially after the transplant. And for heaven's sake, you have every right to moan!
@Lizdeflores hopefully you won't feel so rough for long - did the hospital team give you some idea of what to expect? I think for my first few chemo treatments I had at least one good week in between. But I think your schedule is quite different to mine, I can't scroll back on my tablet so can't check what you said about it, sorry. BTW it's not me waiting for surgery, did you mean Gillmoregirl? I have got a scan at the end of this month which, I realise, I'm not quite as confident about as I thought!

Yes @Bloodybridget I did mean @gillmoregirl, I will get better at these round ups!. Good luck with your scan though. The hospital were quite honest about what expect after chemo, I think that I managed to convince myself that a bit of grit and positive attitude would pull me through.
@InOtterNews your not moaning your having a very natural reaction to a grim situation,remember anytime you need support this thread is here for you.x

@InOtterNews sending positive vibes back to you and everyone else x

@Lizdeflores I can't remember what your chemo schedule is but mine was chemo every 21 days. 2 different types of chemo.

The not too bad one (RCHOP) I felt a bit rough for a few days after - let's say a week to be generous. Week 2 was pain from GCSF. Week 3 I was back to normal

The crappy chemo (Cytarabine) I was basically unwell for 19 days.

So it all depends on the strength of chemo and how long your cycle is. Also how many can cycles you are due to have.

I think also there is a mental hurdle with the first chemo which I think affects energy levels.

My schedule is 3weekly Paclitaxel and carboplatin.

@ViveLEntenteCordiale waiting is the worst bit. Sending you all the strength in the world - 29 July - will be thinking of you.

@ElaineMarieBenes great that you have been discharged. I love sesame seeds! Is the oil helping?

@InOtterNews thanks for the good wishes re: waiting for results.
Sounds tough but if it means you can be clear of this bastard disease for a while it will all be worth it. I mean, not easy by any stretch of imagination but the end result is enough to keep you going.

@Lizdeflores I can completely sympathise as I have an energetic 8-year old. I hope the horridness starts to ease off soon.

@Bloodybridget good luck with the scan at the end of July. It is so easy for one’s confidence to dissipate the nearer you get to the date. Thinking of you and sending you all the good vibes.

I have been living a life through a filter this past week. Am absolutely crapping myself - tomorrow are the scans: CT and bone. On Tuesday I get told the results & treatment plan. I go through phases of howling with tears, anger, acceptance (whatever will be, will be), manic positive thinking, you name it.

Bottom line: I am SO scared.

@gillmoregirl how did the pre-op assessment over the phone go?

@balkanscot I'm holding out my hand to you for tomorrow and Tuesday. Are you sleeping?

@Bloodybridget thank you SO much! Strangely enough, I fall asleep the minute my head hits the pillow. I guess by then I am so emotionally drained that I just crash out. Mornings are quite bad as I start waking up, realising that this is not a bloody dream, it’s happening for real. Afternoons are the worst.

@balkanscot - good luck this week - I’m waiting for the lymph node test results and my CT scan appointment and so I know how you feel!

@balkanscot pre op assessment was usual tick box exercise re what medication I'm on any health issues. etc. Have to admit I under rated my wine consumption. My only vice. Lol. No other information given. The next day I received letter from new surgeon to say that he is waiting for a date to scope and decide on which surgery to undertake - Trans anal or low anterior resection with rectal removal. What a choice : I'm praying for the first option but knowing my luck it will prob be the bigger op due to size of this bloody thing. Have to wait until 10/08 for flexible sigmoidoscopy. He said discussions will take place with radiologist re op.

I will be thinking of you tomorrow and Tuesday. You have everyone's best wishes with you. Xx

@gillmoregirl 💐

@gillmoregirl, sorry you still have to wait quite a while for the sigmoidoscopy. And the rest! Virtual hug to you.
@Trumpton I just heard Ellan Vannin on R3 and thought of you! How are you doing?
I am going to Norfolk today, six hour round trip, to see my 14mo great nephew (and his parents), first time irl since well before lockdown. Looking forward to the visit; the masked train journey, not so much!

Waiting, part 1: drinking Omnipaque and waiting for the CT scan. Then straight for bone scintigraphy. Trying very hard not to cry my eyes out. And then I still need to survive tomorrow when I hear what’s been happening/what will happen.

-@ElaineMarieBenes good luck with the lymph node test results!

@gillmoregirl thank you so much! I hope your scan results result in a treatment that is not as brutal. My brother had sigmoid cancer last year, he is now fine & well.

@Bloodybridget congratulations on being a great aunt and wishing you a safe journey today!

Thank you @balkanscot, it must be crap having to wait around on your own. My thoughts are with you.
It is quite nice being on the train. Lovely big flat fields of crops and cows, a huge sky with puffy clouds.

@Bloodybridget sounds like a lovely visual therapy.

All done. Scintigraphy spooked me a lot, the first bit when it’s literally in your face. I had to beg the nurse to let me take my mask off my nose at least. Awful!

Feeling so drained! Tomorrow is the day.

FFS just had a complete emotional meltdown on the phone to ward manager. They wanted me to go in tonight. I'm not due to start chemo until Thursday. Even taking in to account the need for MRSA/Covid swabbing the day before this is ridiculously early. Mentally I'm not prepared because I just associate being there with making me ill.

He said it's your last chemo - why are you getting upset?! To be fair I wasn't expecting me to react that way - though I am very tired.

They've agreed to try again to tomorrow - when I will hopefully be much better prepared.

Oh @InOtterNews, not surprising you had a meltdown, that would have been a horrible shock. Hope you feel better about it tomorrow.

@balkanscot, hope you can get lost in some crap telly tonight, sleep soundly, and just know everyone here is rooting for you.