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.

Best of luck for the coming weeks

Dear OP, I'm glad you are feeling better now the diagnosis seems confirmed or close to it. I think I said in a PP I am one of those people who finds the unknown to be scarier than the known, and in your case, the known is treatable, is treatable at your local hospital not far from your house, and treatment will begin swiftly. So all that is good in the shitty hand that you've been dealt.

I would only continue with work if it feels like a distraction and helpful to you, not because you don't want to let others down etc. If treatment will be easier for you watching Downton and reading novels etc, I wouldn't think twice about getting additional sick time via your GP and I can't imagine this would be a problem.

I think it'll probably be hard to say goodbye to DC esp when DD1 doesn't want to go, but in your heart of hearts you know it's best for them, and you're parenting them 100% as you should.

Hugs and all good wishes for Friday. Notebook and pen with you, and have your questions written down?

-flowers-

I meant!

Thanks

I'm feeling flakey now. DH and I just had a long chat about the DC and we've decided it is best if they go to stay with the grandparents OR my friend. We're going to talk to the DC about it tomorrow. I suspect DD1 will have a strong preference to stay with my lovely friend (she's been over to play with her youngest DS lots of times and they get on super well, but I also think she is going to have a more in-depth understanding of the situation and may not want to go far away). I think DD2 and DS would like to go to the Grandparents. So it's a tricky decision.

We both feel like it's going to be tricky to keep things as they are... self isolating in a not overly large flat with no outside space and only one bathroom is not easily done! And I'm also worried about the kids' wellbeing and it seems so tough on them to be in the thick of this when their normal life has already ground to a halt!

It's somehow just hitting me now that this is actually really happening. I know it's kind of weird to put it like that. But when you see others going through stuff like this, you think it is something that happens to other people, not your family. And those other people are always so brave and strong and positive... I'm not sure I have it in me to be like that.

It's been a huge shock for husband too. He's been incredible and has kept everything going- he must be exhausted. And this is partly why I think it is the right thing to do with the kids. I don't want him to be completely worn into the ground.

When we were talking he got all tearful and I felt so bad... I just wish I could make it all better for him.

I could just cry, but I'm afraid if I let myself I'll never stop Although it is apparently a biological fact that the average human can only cry 36 tears at a time, so I suppose you'd always stop eventually....!

@agonyauntie2020 thank you so much for that! And the notebook is definitely a good plan, as is the writing down questions in advance.

And I have a tc booked with my GP for Friday (post appointment) so it will be easier to deal with the sick note situation then when I have more answers and info. Work have been very nice about it so far. My GP wrote the note quite dramatically ("it is CRITICAL that she self isolates while these serious and urgent investigations are made") so they've barely asked a question!

God I must be really slow as it has only just clicked after reading your latest updates that you are in the "extremely vulnerable" category aren't you and have to do shielding now.
Hugs to you OP

Goodness how things change in a week. At least you have a diagnosis and hopefully a treatment plan from Friday. I don't have any experience of AML so can't be helpful there but wish you all the best and hope it is not too traumatic. You are one courageous lady.

I know, it has been so fast! Almost too fast.

I keep hearing about medical appointments and investigations that people are getting cancelled and I'm so sorry. I feel so grateful that I have actually been seen and that I will hopefully start treatment quickly.

Morning Jourdain11.

I've been thinking about you.

Just popping on to say that you do NOT need to feel grateful for having been diagnosed with acute cancer during a worldwide pandemic! You do see how ridiculous that sounds when I put it like that don't you?

Imagine your best friend was gong through what you're going through. Would you feel that she should feel guilty or grateful? Of course not.

Because it's shitty, shitty luck.

I don't know if you've ventured onto the cancer support thread, but over there we tend to reject the 'brave cancer sufferer' narrative as unhelpful at best. It's a just a way of Othering cancer patients when it comes down to it, under the guise of caring. I know that sounds harsh, and I don't for a moment think it's consciously done, but I think it would really help you psychologically if you stop worrying about being a burden.

You're not. You're a valued and loved mother, wife and daughter (and much more besides) who is going through something terrible.

Sending love and strength to you

Your message honestly made me cry a bit! It was so nice of you to take the time. I just feel bad and I feel guilty - I know it doesn't make sense, but I can't help it! I truly do feel quite fortunate that my concerns weren't just dismissed when I went to the UTC. But it makes me sad to know that others have been put off...

A confirmed leukaemia diagnosis (all types, irrespective of treatment status) count as the exceptionally vulnerable ‘shield’ group. See if your GP (who sounds rather nice) can get you into that system - my letter came from GP though I expect it’s run centrally somewhere. That letter covers the whole 12 weeks for everything to do with employment (and for UC applications)

I know my opinion doesn’t amount to a row of beans in this, but FWIW I think your plan for DC to GPs is the right one. Keeping them together is important and you don’t yet know how long the first intensive rounds will last. Maybe they could be nearer in a little while when you are on to consolidation,

I’m finding my days in shield isolation are beginning to blur into each other already. What do you have planned for your cocoon today?

Sorry to make you cry :(. I mean, you probably need a good cry.

I suppose from where I'm standing the guilt makes no sense, but actually I probably felt it too. It's all a blur!

Have some virtual

Just found this thread and read through it, I’m utterly stunned that the first GP fobbed you off as having anxiety (regardless of you being distracted on the phone) especially as you had a history of iffy bloody results, I’m just gobsmacked. Obviously you have a lot on your plate right now and the rest of the health professionals have been incredible, but how many people would have listened to that first GP and ended up in a critical situation? Personally if that was me or anyone in my family they’d at the very least have some form of complaint lodged. I know that’s probably the least of your worries but once you’re stable it might be worth contacting PALS, otherwise nothing will change and the same or worse could happen to someone else. I have enormous admiration for how you’ve handled all this, and I hope you make a speedy recovery. Take care

@iVampire Thank you for being honest about the DC situation and your input is actually very helpful, as someone who's been through this and know what's practical etc. We had a big chat with DC and my husband's parents this morning. My FIL is going to drive up and collect them on Sunday and they say they will try to make it as much as possible like a nice holiday for them. Bless! It will be nice in that they do have a huge garden and woods nearby and so on, much nicer for them than being cooped up in a flat with two stressed our parents! As I expected, DS and DD2 seem quite up for it (at the moment, anyway). DD1 didn't want to go but seemed to then come round a bit.

I've had an unproductive isolation day! I was feeling really tired this morning and got dizzy and out of breath trying to do "energetic" things (like sitting up and going to the bathroom, lol......). I need to reanimate myself a little to have a Zoom call with my line manager about some handover stuff this afternoon!

Miles I meant, you made me cry in a good way... if that makes any sense at all! You made me cry by being nice I am not a big crier, but the two things that make me cry are people being kind in difficult times, and soppy films

@YouAreTheEggManIAmTheWalrus My husband is fuming at the GP! But I think it was a tough one for him because he was a locum and had never seen or spoken to me. All he had to go on was what I said and my previous notes, and I doubt he managed to read all through them! I was not insistent enough. TC is really not great for anything more complicated than follow ups, prescriptions, earache, and so on!

Just to say good morning and good luck today - we're all thinking of you and hoping it goes well.

Well done on the decision with the DC. It absolutely sounds like the right one to me.

Hugs.

Even though you say I’m a person who’s been through this, I think our paths of experience are about to diverge sharply. My treatment has all been done on an outpatient basis

I hope today’s appointment goes well, that you come away with a good understanding of what your team wants to do and why.

And that you feel confident with that team - that’s one of the things which can really make a difference

Just checking in to say I've been thinking of you and hope today went as well as it could have

Been thinking of you today and wondering how you got on

Thanks, everyone, for the kind messages. It all went fine and I definitely feel like I've got a clearer idea about what is planned now. It was a bit overwhelming - so much detail and everything moving so quickly! But the team seem to be great, gave me loads of time to ask questions, provided all the numbers I need, explained the rationale behind the treatment plan.... I definitely feel in safe hands. It hit me a bit how much of the initial treatment will be inpatient and how much time I'll be spending in hospital. But I know it is to give the best chance of recovery.

I also had a telephone call with my regular GP, who said that she's going to arrange that I'm on The List, but also wrote a note for my work to say that I am now essentially on The List and signed off accordingly. Perhaps later on I'll be able to work remotely but she said it is unrealistic for them or me to expect anything like that for the moment. I need to do a little bit of handover so that others can carry on from where I've left off, but I can get that all wrapped up easily over the next few days.

It is weird how easy it is just to forget the lockdown...! The nurse was telling me I should get my hair cut (I have a lot of wavy, long hair...) so that it will be less annoying/painful/distressing when it all falls out. And I said, "yeah, I'll book it at the hairdressers". And then we were both like, "oh, wait..."

I may have to go at it with the scissors myself! Results could be highly "interesting".

Thanks again for all the moral support

Hi - I lost you 🙁. What a whirlwind 10 days you’ve had! I’m pleased your medical team appear to be brilliant! The kids going to your PIL (for now) will be the best thing. You handled things with DD1 perfectly -the truth st a 7yo level is exactly what she needs. I’m not surprised she doesn’t want to go, but it’s the best thing for her (& you) Keep talking to her & being (fairly) honest and she’ll be fine. Your friend is a star, there will be plenty of opportunity for her to help too.

Sorry about your hair cut, I think I’d let DH do it, I don’t think I could do it myself.

Love DD2’s essential shopping! 😊

Sending you lots of love and positive vibes.

Have you considered the MN haircut?

www.mumsnet.com/Talk/style_and_beauty/1403769-I-bloody-love-the-MN-haircut

Or would it be too much to suggest DD1 does it? Then again, it might upset her if it goes badly. DIY or DH after they’re safely at their GPs might be best.

Wig services might not be running as usual, but the places which sell soft turbans/wraps etc might be.

I’m so glad to read that you’re happy with your haem team and the plan in general.

What will you be up to this weekend? Do you have a safe outside space you can go to and be outdoors for a while?

I'm going to do a ponytail and chop - it should work out as a kind of Amélie bob. My mum used to do it to us in September before we went back to school. I've told DD1 that she can do the chopping. She's quite good with a pair of scissors!

We had quite a nice day. I had an upset stomach this morning (I think my stomach hates the antibiotics) and I think we all really felt the need to get out, so we went to the communal gardens across the road. Not really properly isolational, but it seemed fairly unrisky and everyone (including me) felt better for it!

We're now packing the DCs' stuff for going away. Just realised that DS had grown out of practically all his clothes - arghh! DDs are both very keen on the leggings and jumper/dress combo, so we can't really use their cast offs! He's an amazingly easy going little boy, but I think even he would protest at rainbow leggings and pink sweatshirts....

Meanwhile DD2 is wanting to pack her favourite biscuits and DD1 has now chosen 23 books to take with her. Half of which I'm convinced are age-inappropriate!

I need to look into the wig / wrap situation. At the hospital they said there will be delays with wig services at the moment. I feel a bit upset about the hair. So trivial!!!

Thanks and to all for the kind messages. I hope you've all managed to enjoy the sunshine a bit in a socially-distant kind of way...

Hi Jourdain,
I’ve been following your thread and I’m thinking of you.

Having been in the hair situation you now find yourself in I just wanted to say that it does grow back! I cut off my long straight hair which my then MIL clippered away for me. It grew back very curly which was amazing!

My chemo was through the winter which was very chilly at night - I wore a woolly hat!

Huge warmest love and thoughts to you and all of yours.

Always difficult having to talk symptoms with a strange doctor and especially now. When you go back to the Doctors you may now have a better understanding of what you want from them and why as theres been some great advice here.
I apparently have anxiety, I always thought it was depression and couldn't understand that diagnosis. Don't doubt yourself because you are the expert of you. Take care.