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.

[Jourdain11]

I also feel bad about the other doctor - last week's doctor. My GP seemed annoyed that he hadn't been thorough enough, or not asked the right questions, but it was also very much my fault. I was told to expect the call between 2-4pm but it ended up being after 5 and I had all the DC on my hands and was rushing through it a bit because it was a crappy time to talk.

[Lifeisabeach09]

You need your bloods checked.
I'd email you practice with ALL your symptoms and timeframe plus eating habits since onset. Explain you'd like a telephone appointment with a GP urgently. Follow up with phone call.
(Email is an evidence trail)

[Lifeisabeach09]

Sorry!! Didn't read the full thread.

[iVampire]

Unfortunately not all GPs are good at spotting the signs of blood cancer and charities have been making quite a push in the last couple of years to raise awareness and provide CPD. But there are still too many people whose doctors don’t do FBC when someone has a few of the (quite non specific) group of symptoms. I’m glad your second GP was more switched on

When is your haem appointment?

[Jourdain11]

@iVampire Thank you so much for taking the time to reply so much, it sounds like you've been through all this and I am so sorry if that's the case, because you are right, it is no fun at all, any of it.

Husband is trying to preoccupy the kids, who are obviously a bit confused. But we will get a chance to talk properly later (in an isolated kind of way). I'm honestly holding up okay, I could have quite easily dropped off to sleep, but then this stomach ache came on and I feel all uncomfortable and sicky and sore

My GP said that they would almost certainly want to take a bone marrow sample, which I guess is the aspiration thing? She seemed to think I won't have to wait very long. I hope not.

She also said that if the antibody thing comes back positive it might indicate differently, but she didn't want to wait around.

[Etinox]

@Jourdain11 and 😮 at your GP. However you’ll always know where you are with her, and you sound very strong!

[Jourdain11]

I think we crossed posts, sorry! But about the appointment, she said I will hear tomorrow but doesn't think I will have to wait long.

[agonyauntie2020]

Jourdain11

You sound like such a nice person. You started the thread because you were worried about overwhelming the NHS despite having concerning symptoms and feeling tired and crappy, then you didn't want to tell your friends because you don't want to worry them unnecessarily, and now you've even made a nice message for PP who hadn't read the updates.

I would, if I were you, probably tell a close friend or two now, because it's worrying, and it's good to have someone to lean on in addition to DH. I second the poster who said that these days, in 2020, there are a lot of new treatments (for all sorts of things), and even though your GP could do with a few tips/training in delivering worrisome news, it's helpful I hope for your nerves to know that she will make an urgent referral to hematology meaning diagnosis will be swift and treatment plans quickly forthcoming.

For some people (I"m one) not knowing is almost worse than knowing, because knowing comes with control "it's this, we're doing x, y and z" and yes, the timing is shit with the virus being around everywhere but it's not going to stop you getting diagnosed and treated.

I hope you get a good rest tonight and that you have the energy to make a fun game of "what counts as veggies?" for the little ones tomorrow. All good and happy thoughts coming your way from all of us on this thread!!! Power of mumsnet positivity!

I don't know if you've seen the "I'll mind your worries for you tonight while you sleep" mumsnet threads but I think they are so helpful and kind. You send your worry, and someone who's awake will mind and take care of it, while you sleep or have a period of time without it.

Let us mind yours and you forget about it and get a good sleep.

[Jourdain11]

@Etinox she is my regular GP for years so I guess she knows what I can take! And yes, you know where you are. (Once when I was asking for some note or other for my boss when I was pregnant, she said "Well, I'm sorry, but your boss sounds like a complete cow!")

[agonyauntie2020]

Here's a current one, the first one is in Classics:

www.mumsnet.com/Talk/_chat/3845081-Bring-your-worries-over-here-the-Night-Shift-are-here-to-mind-them

[Jourdain11]

@agonyauntie2020 Thank you so much, it means an awful lot for strangers to be so kind! I am not always nice, my children will confirm. And it does seem like really bad timing on my part, to have all this going on at the same time as a worldwide pandemic....!

[iVampire]

You suspected correctly Jourdain I have leukaemia, but I’m pretty sure you won’t have the same type as me (I had a superabundance of white blood cells). There are so many types I can only really talk in generalities, about what it’s like to have that first haem appointment.

I had bloods taken for something completely different one Wednesday, got a phone call from my GP on Thursday, saying a haem appointment had been made for me Friday morning and I really needed to keep it. So I understand the dizzying rush and the feeling of utter unreality,

Will you be having more scans? And did GP mention need for any lymph node biopsies?

Aspiration is just the long word for sucking out, it’s essentially a type of biopsy, where they go through the bone to reach the marrow. They will (probably) also want to take a small part of the bone. IIRC it took a week or so to get the test results In my case, they were looking for a specific mutation, other tests might take different amounts of time until results

Worth asking how long each test takes for results. Also what it is they are looking for with each

Remember to take a notebook with you; find one now, so you can write down questions as you think of them

Oh, and take some magazines or make sure you have some good mindless apps on your phone. When you have a few things that need to be done, there’s bound to be oodles if hanging round

[Jourdain11]

@iVampire thank you - it is nice to hear about it from someone who has been through it, although I'm very sorry that you have been through it (sorry, not making sense!)

GP did mention lymph node biopsy as well, said this was recommended because in the US they said that some were quite enlarged and looked "unusual". She also said my stomach pain and random weird feeling full all the time feeling will be because my spleen is enlarged and pressing on my stomach (which sounds kind of yucky!).

Thanks for the tips on notebook, hanging around etc. I hate having nothing to read! And I prefer to know exactly what doctors are looking for when they are doing tests!

I hope you're doing okay at the moment, since I'm guessing that you are in full on isolation? I have no idea how one explains this to kids!! Mine do not get it.

[Mooey89]

What a whirlwind you’ve had OP. Take care of yourself as best you can. I’m so sorry you’re having such a tough time.

[iVampire]

How old are the DC?

Mine were teens, and all my initial appts were pretty much during the school day, so easy to hide it from them until diagnosis confirmed and I could set out what the treatment was.

As everyone is home at the moment, it’s harder to hide. Especially as you need to work out if it’s better that you all isolate as a family unit now, or if you need to be isolated from your family (who will need to do social distancing to the letter)

[iVampire]

I’m fine, btw, my kind of leukaemia can be controlled by a specific inhibitor drug, so my blood counts have been normal for quite some time, and the level of leukaemic cells is v low (though I had to go on to a second line drug, which is working well but it still needs to go down a bit further)

I hope you don’t mind, but as you mention lymph node involvement, it sounds like they are testing for lymphoma so I’m putting a shout out to @MilesJuppismybitch and @tahitiitsamagicslplace as they know far more about that than I do

[agonyauntie2020]

iVampire

[Jourdain11]

@iVampire of course I don't mind! Thank you. And I'm glad to hear that your health is under good control at the moment, but it must be a stressful time all the same.

DC are 7, 6 and 4. I'm afraid that they are currently very confused about why their mother has suddenly gone into hiding. I've holed up in the study, which is tiny, but has a big window and a comfortable sofa bed, so I am okay!

The prob with family isolation is that the kids were at school till last Friday and DH has still been at school, so I don't think it really makes sense to do it

[iVampire]

Tactical tummy ache?

How about telling the DC that it’s not the virus, but Mummy will need to see the doctor to sort out her tummy and she needs to be alone until it’s fixed.

As enlarged spleen is part of your symptoms, this isn’t a direct lie. And it’s something that you can then take in any direction you need in future. There’s no point in worrying DC now, and plenty of time to consider how you tell them, once you know what it is you will be telling them. All you need now is a holding pattern

And yes, SI is worth it - because any of your cohabitants could be incubating it, and you really do not want any unnecessary exposure. Even if it turns out there is nothing sinister behind your neutropenia, right now you have it and so you are very vulnerable to any infection.

[Jourdain11]

Thank you! That's actually more or less exactly what DH told them. They're being so good. It's just rubbish timing since they don't even have the distraction of their usual daily routine But I don't see the point in worrying them when we don't even know what, if anything, the worry is.

I think it has to be SI, there's just no way that I can be sure that anybody isn't incubating it and because we don't have a garden it would be awful for the DC not to be able to get outside at all. My GP also said the neutrophils are concerning because they were borderline "severe" and that I should be on the watch for any fever at all and if they go lower it would be necessary to do a transfusion (or infusion?) but I'm hoping that's not going to be necessary!!

Anyway, thx again so much for all your kindness and advice!

[Jourdain11]

Woke up from stomach ache and now I can't switch my worries off. Mainly about DC. If anyone happens to be awake for a virtual handheld or "pull yourself together".....

Sorry, to be needy and wet!

[PrincessSarene]

I’m awake and sending you a virtual handhold. Worries always seem so much stronger at night. It might not help very much but at least you’re being seen by the right people to work out what exactly is going on and then to define an appropriate treatment plan. Have you got some good games/mindless apps as suggested by a PP?

[Jourdain11]

Thank you I'm not a big games person actually, but I read for a bit and felt better. Still not got more sleep, but it is more because my stomach hurts than the worries. You're right, as soon as the sun comes up, things do seem a bit more in control!

[Jourdain11]

Thx for the hand-hold

[Vebrithien]

Morning,

Just wanted to wish you all the very best right now. So glad you made the decision to go, and that the investigations needed are taking place.

Have you any plans for today? If you've SI in the study, are you a crafty (in the best sense!) person? I've been amazed at the extra garden birds I'm seeing around, without all the people outside. Can you open the big window for some fresh air?

Sending hugs, un-mumsnetty or not!