Cancer Support thread 88 - virtual rage room currently empty, virtual collective afternoon tea - all welcome!

[LemonDrizzle10]

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@Silkierabbit I lasted just a couple of days with memory foam pillows as they threw my neck into a spasm. So painful! Hopefully it is the explanation for your pain but sensible to get it checked.

I’m feeling quite good this week, apart from feeling woozy if I stand up too quickly, I think because I’m anaemic. Having another blood test tomorrow ahead of a telephone appointment with an oncologist on Friday (mine is on holiday so this is someone I haven’t met before) to see how everything is going ahead of my planned return to chemo next Wednesday. I had an unplanned sit down on the floor yesterday while getting washing off the clothes horse as I thought I was about to faint. Then I took DD17 for a blood test (also checking for anaemia) and she came over all clammy and had to lie down. When she got home she just made it to the bed in time. We are like a couple of Jane Austen characters swooning all over the place lol.

@Silkierabbit really hope your issues are just mechanical rather than a recurrence and you get your MRI quickly.

I am in recurrence-scare land, hopefully only local if there is one and still treatable. My GP was reassuring, and thinks that the patch on my vaginal scar is not a recurrence, but the CNS, like yours Silkie was more hmm. My appointment with the gynaecology oncologist is this morning.

@Remaker I got terrible dizziness with and after chemo, though I also have naturally low blood pressure and tend towards it anyway. It seems to be receding now after 8 months but not completely gone.

Thanks @Atreus that's really helpful

I'm sorry to hear about your back @Silkierabbit.. For the last two weeks I've been convinced every ache I get is sinister but I hope it is being 55 !

@lucysmam I do hope you get to sports day.

@Remaker i had terrible anaemia in chemo but also low blood pressure so was keeling over all the time.

Thanks @SierraSapphire and @bringonyourwreckingball. I was very anaemic when I was diagnosed with bowel cancer in February. I had an iron infusion before I had surgery and my haemoglobin levels had been doing pretty well but just started dropping recently. My blood pressure had tended a bit to the high side for the past few years, but when I was in hospital recently I was getting measurements similar to my teenage daughter! So it’s probably playing a part too. Just have to take it easy and not try to jump up quickly or down I will go!

My class teacher messaged after I'd gone to bed last night with timings for today. Maybe everyone was in fact just busy & I was overthinking 🤔

I've woken up with a headache though so will see what that's like in a while, before I actually go anywhere. Probably not helped by spending the entire day in front of a screen trying for tickets, yesterday 🙄

@Silkierabbit I hope the MRI comes through quickly & it turns out to be nothing 🤞

@SierraSapphire thinking of you this morning and really hoping it's nothing to worry about.

Thanks @Fantasea - there always seems to be something to worry about! I'm distracting myself with work for another hour or so before I have to go, and I'm taking the rest of the day off after that. If it's not bad news, I may go to the Lido, even though it's going to rain!

Thanks @Silkierabbit - that’s really encouraging. We’re still waiting to know more about the cancer before the treatment plan is finalised but it’s likely to involve surgery and chemo though not clear yet in what order.
Everything I’ve read and been told says that it’s totally treatable and I’m determined to approach it as an ordinary illness that just requires rather gruelling treatment. But I’m worried about how to tell people in a way that stops them going into full cancer drama death sentence mode.

@Silkierabbit that is horrible and scary and I hope your scan is not too noisy.

@Remaker can you still buy smelling salts? I was a teenage fainter so well used to them. I love the picture of you both in crinolines swooning.

I have made it to that there London. The train was great, then we got a big pink Barbie taxi to DS house for £30 where I am being pampered. We will venture out to ride on the Thames Ferries later. I can’t walk far but have installed the Uber app. It’s weird being away from home.

@TopOfTheCliff - glad you have made it to London, and I hope you enjoy some nice, gentle sightseeing and lots of being looked after.

@Florabritannica - I'm sorry to hear your news, but welcome. I have BC with lymph node involvement. Mine was high grade and I was pre-menopausal (49 when I was diagnosed). I've had/am having the full gamut of treatment, but am now 11 months on from diagnosis and in lots of ways feel better than I did before. I've lost weight, got back to running and am prioritising myself more over looking after other people. I would never say I was 'back to normal' as so much of my world view has changed and I worry a lot about recurrence, but I'm back to a life I can enjoy.

@lucysmam - hope you make it to sports day. My daughters both managed to get TS tickets (for two different shows). Lots of their friends did too. I am really pleased for them, but also wonder whether the supposed massive overwhelming demand was partly hype?

@SierraSapphire - hoping for good news for you today, and @Silkierabbit - hoping your back is nothing sinister.

Got an appointment through at hospital for this pm which seems worryingly quick although obviously I want the lumpectomy as soon as. Am guessing just to discuss what happens?

@craggyrat - IME, it's completely futile to try to read good or bad news into the speed with which appointments come through. But always better not to be kept waiting. Good luck.

I'm at the hospital to see the consultant but she's running over an hour late. It's torture! My friend might have to go back to work before I'm seen 😭.

@dotty2 Thank you! I’ve been lurking on here for a little while during the wait for diagnosis and it seems a really lovely supportive community.

@SierraSapphire oh you poor thing, really hoping you're seen before your friend has to go xxx

@SierraSapphire all the waiting around is so annoying. Hope you get in soon!

Still waiting, nearly 2 hours....

I have about 30 mins left on my last chemo. It’s a weird feeling and im not cejebrating just yet as still a long way to go.

I was in London yesterday at a graduation @TopOfTheCliff we went to The Ivy at London Bridge and it was very nice with lovely views. There’s also a good show on at the theatre next door.

I hope you have a good time whatever you decide to do.

Finally went in. The consultant had a look and thinks it's just a tear that's healing, but given all the things that didn't show up before and turned out to be cancer, I've had a biopsy and so more waiting. So not bad news but not yet good news!

Well done @EachandEveryone - I don't think I celebrated chemo ending, but it's a big step!

@SierraSapphire in my former life as a GP I did occasionally furtle in those regions and granulation tissue after surgery is very common. It can be cauterised with silver nitrate if needed. I hope that’s what it is. Common things are common!

Had a gentle river cruise to Greenwich, now lunching on Cutty Sark. Very gentle but my feet are sore. I’ve already lost my phone and found it again I’m not safe on the loose!

Thanks @TopOfTheCliff, that's what my GP said, and I got the impression that the consultant might not even have biopsied it if it hadn't been for my "surprise" results after hysterectomy. She used silver nitrate. She also told me I had a dry vagina. Happy days . Hope you continue to have a lovely day in London. I'm going to go to Homebase and get some compost to repot some house plants.

@SierraSapphire pleased you got seen and hoping your biopsy results come through quickly and give you the reassurance you need.

@dotty2 I definitely think some of the chaos for tickets is down to the hype. It's been built up for that long. That said, dd1 has been a fan for years & there were tears and have been many thank-yous since we booked (she performed Shake It Off in a school talent show in y3 & dressed up as Cheerleader TS for a "rock star day" thing too, in about y6 🤣).

I made it to sports day & had fun with the dc's, thank you 😊 I have grassy knees from joining in with my little group 🤣

It was lovely to see everyone & I had a nice wander round school popping in on various people to say hello! I'm possibly going back for the end of year "afternoon tea" next Thursday, and maybe for the last afternoon of term, on Friday. Maybe - depends entirely how I feel.

I found out I'm down to be 1-1 with our little boy with severe autism when I return. Not entirely sure how I feel about that - he's quite physical & pretty strong for such a little person. I think he'd take me down if he pushed hard enough atm. Will be discussing with whichever oncologist I see next week before bringing it up at school, see what they say.

Also found out that the breakfast club contract that I thought was temporary until the end of term, has been extended into the new school year, if I still want it. I was wondering what was happening about that.

I've brought home lots of peg people to paint, for various teachers, and am waiting for a message from another with her first topics/books to see what I can do there. There's no point repeating props though so I'll be finding the things I've done over the past 2 years if there are repeats!

I'm on the hunt for something to make a sweetie house for Hansel and Gretel - not a clue what until I see it 🤷‍♀️ I considered crochet (I have a fairly sturdy pattern saved) but there must be something easier & quicker that I'm missing 🤔 Google and Pinterest aren't being helpful atm. & I'm hunting for a cheap green apron to turn into a story telling prop - someone's bound to have something unloved/unworn lurking about.

That was a lot of waffle

@TopOfTheCliff I hope you're having a fab time in London & your feet don't ache too much!

@EachandEveryone well done on getting to the end of chemo!

@SierraSapphire fingers crossed your biopsy results come through quickly 🤞 Did your friend end up having to leave? I tend to take my best friend if it's her day off - I'd be lost sat in a waiting room, if she had to go.

@lucysmam My friend made it through the appointment, but then she had to dash off straight afterwards, I was really hungry by the time we came out (nearly 1.30) so I went to a cafe by myself on the way home and sat out in the courtyard, it would have been nice to have some company, but my friend has a big show tomorrow and so I was grateful that she spent time with me this morning. One-to-one does sound quite intense for you going back to school, maybe they're making incorrect assumptions about what you're up to doing, sounds worth raising.

Thanks also @Fantasea - though I hope my biopsy results don't come through that quickly, as that is more likely to indicate a problem! I'm away for the latter part of next week, I don't want to hear whilst I'm away, I don't know whether I can tell the hospital to not ring me until the week after, I don't get the sense that they're that coordinated....