How selfish would this be?

[Jourdain11]

I just need a sounding board because I don't trust my own judgement any more and don't want to freak out my family and friends, many of whom are already struggling at this difficult time...

So as not to drip-feed: I'm not very health-anxious and have been coping okay with the Covid-19 situation up till now. We had a case at work very early in proceesinfa and got locked down. Husband is a PS teacher and working this week. We have been reasonably sensible and socially isolated, but of course we're all getting exposure through him!

My dilemma is this: for the last about 4 weeks, I've been really wiped out. Really exhausted, achey, weak. I've also been getting lots of nosebleeds (unusual) and people have been commenting that I look really pale and asking if I lost weight. I've actually lost about a stone, but it may be lack of appetite.

Of course, I looked up my symptoms and got worried ... so made an appointment with the GP, telephone (natch) and spoke to a GP who I've never seen before, who said this is classic anxiety, everyone is anxious, to practise breathing techniques and mindfulness, etc. He may well be right, but my issue is... I haven't been feeling that anxious. I'm generally quite a day-by-day person and haven't felt this as hard as many others.

I tried the relaxation.. but basically, I'm just concerned it might be more. And I'm now scared that if I wait till I can get a face-to-face, some time in the long and far distant future (!!!) it might be "too late". Blah blah blah. You get what I'm saying.

My GP surgery are saying absolute no face-to-face and they can refer me for IAPTs but it will be a long wait. If I think I need something quicker, I should go to the local hospital Urgent Treatment. And I'm almost at the point where I will go....... but it seems so bloody selfish to go at a time like this?

I just don't know. So please, any thoughts will help!

Yes - Go. The worst that can happen is I'll waste little bit of NHS time and piss off some overworked staff.

No - Don't go. I'm being selfish and ridiculous to contemplate it!

Thx v much à l'avance.

I would absolutely go to the hospital, and not to worry about wasting doctors' time - how busy hospitals are is really regionally dependent and is more media hype than reality (I have a bunch of doctor friends who I hear first-hand accounts from). While not always so, nosebleeds can indicate something serious. If you decide not to go, an alternative would be to keep a diary for at least a week and record all your symptoms daily, including any weight changes/on-off nosebleeds.

@crambosk - things have moved on very quickly for the OP.

Hope your bloods come back as expected, OP xxx

When are you hoping for bail to begin?

I put on weight on my first TKI - mainly water retention as I list about half of it effortlessly when my meds were changed (and the feeling of puffiness round my eyes went at the sane time). So these drugs really can do weird things to quite a number of bodily systems!

On streamed telly: have you watched The Windsors?
What might you fancy - comedy? action? period drama? comfort murder?

I’ve just spotted that today is World AML Day!

Hello Jourdain,

Another pop in to say I continue to think of you and your family.

We’ve had some bright and breezy days here this week. Today seems a bit overcast so far.

I hope you’ll have some sunshine today both metaphorically and pouring in through your window.

Oh bless you, hope the bloods don’t complicate matters and you’re still liberated as expected!

On the TV front, I watched a series of 6 episodes called The Last Post this week. It had a feel very much like The Crown, and was so gripping I stayed up until 4 am one night watching it!! There is one quite raunchy sex scene as I remember, so make sure you watch that one with headphones on but otherwise a really well done period drama about a British military base in the Middle East in the 60s - Not something I would normally be drawn to! But thought I’d give it a whirl and glad I did.

Anyway, I haven’t much useful to offer in terms of support except my TV recommendations but I just wanted to check in with you.

Hello again Thank you for the messages and recommendations. @RUSU92 I love the sound of The Last Post and will definitely give it a try!

I had a day's delay due to dodgy bloods but I'm now back at home. Lucky we have the balcony, so I am getting some fresh air and sunshine which is lovely. Other than that, I'm just napping a lot and trying to do a little bit of very light yoga and so on to keep some level of activity/calmness! I even managed to do a bit of work this morning - just a load of handover emails to the people who are picking up my projects, but I feel a lot better mentally for having managed to do it.

DH is teaching online, so he's been pretty busy setting and marking work and doing online support. They're also doing a ring round to all the kids this week to make sure that they are doing okay. I can hear him swearing at the moment, so hopefully he isn't on the phone right now...!

The DC seem to be fine - they are quite motivated with their schoolwork, even DD2 who was very resistant before the hols! DD1 is quite high in terms of her class (although I swear I'm not a pushy parent, she just really loves her schoolwork!!) and is finding the workload really light, but she's been doing some of the BBC history stuff and is reading lots (now halfway through Harry Potter 2 and still convinced that Voldemort made the coronavirus - somebody should suggest this to JK....). I'm really wondering when the schools are going to go back because obviously we will need to reconsider things then. But nobody knows (although DH is expecting 1 June, in some form...). At the moment, I think it is good where they are. They are getting lots of walks and playing outside and it's nice for them to be able to do that.

Hope you're all doing okay!

Hey Jourdain!

Great to see you!

So glad you are back at home and sitting out on your own balcony.

Well, that’s the first one done and dusted.

When I was having chemo a yoga teacher friend taught me some breathing techniques that got me through a lot of things. So I’m glad you’ve got yoga.

Glad your work emails are off your mind now too.

Good to hear the DC are doing well. Hard to plan when everything is up in the air. One day at a time (actually sometimes half an hour at a time is enough).

Love to you and yours.

Lovely to her from you @Jourdain11
Enjoy the sunshine

Hi everyone again Hope you are all doing okay and managing to enjoy a little bit of the sunshine, even for those if you who are shielding!

I woke up this morning and found loads of my hair on the pillow Then made the mistake of trying to brush it into some kind of rearrangement (for the benefit of all the hoardes of people who are going to see me, obviously!) and loads more of it came out. I was surprised by how upset I feel But I'm also very happy that I cut it beforehand - it would have been way worse if it had come out when it was still long.

I'm just trying to tell myself, it's only hair, it will grow back, it might even grow back nicer...(fingers crossed!)

Sorry to hear about your illness and hair loss today. My mom jokes that I had the most expensive going bald hair cut ever when I had chemo as I had it cut long to short, then cropped, then shaved it - all before it actually fell out! Just made me feel in control (and didnt want to upset my very young at the time child). It will grow back, and likely thicker and different. It took two years for mine to get the original texture back, initially it was really thick and curly!!! Now back to lots of fine and straight . Quite fun really and I loved the ease if maintenance with no or very short hair, perfect for summer!! Good luck

Hi Jordain,

I'm popping in again also to see how you are doing, glad to hear you're back home and the DCs are doing well, sorry your hair has taken the sooner-rather-than-later approach to falling out and yes, it will grow back!

Have you already watched Outlander? That's gripping and distracting/transporting. Quite a bit of raunchy sex in that one too, so headphones..

And Schitt's creek is quirky-funny. The mother has an awesome wig collection that might amuse you now. My job requires a lot of Zooms at the moment, and someone had changed their background to the wig collection of the Schitt's creek mum, I did laugh.

Continue to send you all good thoughts, This, too shall pass (and all that).

Kia kaha - stay strong, you are doing so well

They're also doing a ring round to all the kids this week to make sure that they are doing okay.. Aww that’s really lovely. Great for pupils to know their teachers are thinking of their welfare.

Sorry about the hair situation - does it hurt at all?

Thinking of you. Hope you’re enjoying the Netflix recommendations

Good morning,
I have just read your thread and have to say I am completely in awe of your positive attitude and strength. I cannot imagine what you must be going through. The way you share your thoughts is so engaging and inspiring. Have you thought about creative writing - obviously when you feel well enough?
You sound like a fabulous person. 🌈🌈💐😊

Hi Jourdain11. So upsetting when your hair falls out .

I actually found that one of the hardest things to deal with. Things that change your appearance dramatically make it seem much more real, I think.

Are you managing to eat ok? How's your nausea?

Feel free to ignore questions: thinking of you

Hi Jourdain,

I remember the sensation of hair falling out- like it’s standing on end. Very strange. My mother in law shaved it all off for me once it was coming out like that . I felt better like that than the tufty bits. It WILL grow back but that’s not much help I know.

Raining here today and cold enough to light the fire.

When do you start again?

If my bloods are okay, we restart a week tomorrow. It's a bit full on!

I've still not been feeling wonderful, but the really bad nausea is receding, so I have been able to eat a little more. DH has taken to making coke floats (coke with vanilla ice cream) which should be getting plenty of calories in

Still fed up about the hair and you don't realise how much you rely on it to keep your head warm until it starts disappearing! I also didn't expect it to hurt so much - it feels like somebody pulling the hairs out of your scalp one by one However, DS finds it endlessly fascinating. He's already annoyed his father by saying to him, "Mummy's hair is going and yours is getting long and grey!" (In truth, he's no greater than usual... it just shows more because he hasn't had his usual monthly haircut.)

Thank you very much for all the Netflix recommendations! And for the hair-related sympathy. It seems like such a trivial thing, but it really shook me a bit and it meant a lot that you kind of gave me "permission" to feel rubbish about it!

@Valenciaoranges - that's so kind of you! I think I am a bit of a waffler... never 1 word where several will do But, without being too explicit about my work, a lot of what I do is looking at alternative therapeutic interventions for patients in a particular sector of mental health, and we've done a lot of work recently on expressing one's own "narrative", so to speak. It has probably rubbed off on me a bit, and made me even more inclined to waffle than before! 😀

Unfortunately I'm back in the hospital My temperature skyrocketed this morning and I was coughing, so we had to call up and they told me to come in... Seems to be a bacterial chest infection, but luckily nothing worse! So I am stuck here on antibiotics again for a bit... pesky stupid neutrophils! I feel like I am doing something wrong, even though everyone keeps telling me that it is very usual to get infections during treatment and it happens to almost everyone at some point. But I still feel like I should be doing a better job of staying fit!

Hope you're all doing okay

Sorry to hear you are back in hospital . Please do not think you are doing something wrong.

Hope the antibiotics do their job xx

It’s great that your thread is helping you to get things out in a way that helps you. We’re all here to listen!

Crappy news about the infection but at least it’s not the (other!) C word hey?!

Your DS sounds like a hoot! Maybe you’ll have to set him to work on daddy’s hair with some clippers for a lockdown haircut?

It’s ok to feel sad about your hair. If it weren’t so important, women wouldn’t spend hundreds of pounds and many many hours having it cut, styled and coloured every six weeks!! I’ve always been more of a wash and go type myself, and have on more than one occasion given myself a home haircut - I clearly don’t value mine at all!! - but I’d still find it difficult to lose it like that, especially with the discomfort and all the other shit you have going on.

And the eyebrows/lashes too. Nobody volunteers to do that one for charity do they?!

Feel free to waffle/wallow away and hopefully those who’ve been through it can give you the wisdom of their experience, and those who haven’t, just a hand hold.

That's rotten Jourdain

It is horrible when you feel like your body is letting you down, I know.

You may find that you've unconsciously bought into the mind-over-matter mindset. I think that can really be a stick to beat yourself with. Unless you've been juggling with uranium a la Homer Simpson, it's a fair bet you didn't do anything to cause this.

Are you comfy in hospital? Hope you've got a nice view

What a nuisance! But yes, par for the course, in my experience at least.

I remember my CNS telling me at the start of my treatment that it would be giving up a year of my life now for the long term gain. She wasn’t wrong.

Was just thinking about the hair thing. I lost literally every hair on my body.

Except my legs. That was REALLY not ok!

Thinking of you all Jourdain. It’s been really chilly and wet in my part of the SW today but the skies cleared and the sun came out so we nipoed out for a walk.

Just got back now as it’s clouding over again. April showers 😊

Oh my, just read your thread Jourdain
Only to wish you all the very best