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.

Yes - the text of doom was the first notification that I am on the ‘shield’ list, and the letter came the next day.

Do you have enough supplies in the house for a nice or other preferred tipple?

I hope you have a good weekend and manage to avoid thinking about diseases!

Or are you on a no booze at all regime? I’m ok to drink in moderation, so tend to forget it’s verboten for others (sorry)

Did you get a provisional diagnosis? Not meaning to push you for medical stuff you might not be ready to share, but if you want to, we’re here

Yes the Text of Doom is the twelve week thing (no letter for me because I'm so 21st century).

Sorry if I'm derailing the thread. Have they told you you can't have alcohol? Or do you just not fancy it because of the stomach pain?

A lot of us use the Calm/Headspace apps. They can be a real godsend.

Plus a really good cry

I did - but he was very keen to stress that it was not definite and can only be confirmed with the bone marrow sample analysis. AML is what he thinks, because apparently it can present in this way with the pancytopenia and enlarged spleen. He did not think the lymph node US looked abnormal, just very enlarged, but it is being checked to be on the safe side. There are a few other differential diagnoses but they are apparently either very rare or would be unusual in someone my age.

They were keen to stress to me, that if it is AML, the treatment options are good, lots of chance for good outcone as there has been a lot of development since 20 years ago, when this had a really poor prognosis.

I'm not feeling negative. Just a bit overwhelmed. And I read about the treatment pathways in the leaflets which may have been a mistake. It sounds awful!

Yeah, I've been told to skip the alcohol for now, which is a pity because I could do with a drink tonight I'm not feeling hungry at all (because of the stomach pain) but husband has bought all my favourite snack foods, so I'm feeling like I can choke down some chocolate and grapes and french toasts At the hospital, and my GP on the phone said "eat whatever you feel like eating", so I am going to do just that!

Oh damn!

I’m trying to remember how long it took for my 1st bone marrow test to come back - about a week? When do they see you again?

You’re going to have to sort out your isolation. Good job your DH sounds like a star (enjoy the chocolate!) as you family admin is probably going to get a bit complicated in the short term

By the way, my leukaemia is CML - which despite the similar name is a completely different beast

Thank you It is so nice of you all to post kind messages when this is a weird and horrible time for everyone.

My next appointment proper is on Friday, but I need to go in Tuesday for a blood test to check the blood counts because the neutrophils and platelets had dropped again today . They've said it should be Thursday for the bone marrow test to come back.

The thought of the family admin is terrifying me. Honestly I think we could handle it in normal times! I'm so thankful that we have this little study/spare room because the isolation would be so much harder otherwise. We are lucky in that regard. I know husband's parents (in Truro) would be more than happy to give the kids a little holiday usually, but obviously at the moment it is impossible! Likewise, DH brother is here in London and would help out...as would numerous friends and so on, but the same. My mother and stepfather are in Paris, so they are the least accessible of all!

For tonight, I think we need to just leave it alone, but I want to have some sort of plan in place in advance!

DH is a total star, our kids are being amazingly good in weird circumstances, we have amazing friends who will be there for us, even my GP is great (it was so nice of her to ring and I felt bad that I cried down the phone to her!). And everyone on here is so kind, even though you don't even know me! In all the important ways we are lucky. But I still feel like we have been dealt a really awful hand

Ok so it looks like you're joining iVampire's branch of fun rather than mine.

If it is aml, it is (I think) a hungry cancer.

The good thing about those cells is that they suck the treatment in greedily, which then kills them.

I hope you can sleep tonight

Thank you I like the hungry description!

Hopefully my paracetamol is going to kick in soon and then I will definitely be sleeping...

Night all

Jourdain11 Thank you so much for posting your update. I hope the aching stops and you can get a good night's sleep. I am glad they shared the prelim diagnosis and the treatment pathways with you - and the most important part which is that this has a very high chance of a good outcome. You sound like such a lovely person and you're doing amazingly well with this shit hand you've been dealt. Over the next few days you can start getting your head round things and easing into the diagnosis (or whatever diagnosis comes down the pike) and getting mentally ready for treatment and next steps. Thank goodness the 2-week pathway is still in place and has worked and if there's any luck now, treatment will proceed swiftly and uneventfully. Lots of luck for Tuesday and keep us posted. It's not boring at all, we are all rooting for you and sympathezing with you and sending good thoughts into the universe for you, DC and DH.

Just popping on to say hello and that I’m glad to hear they’re pushing this along at a good speed despite all the other things going on in the NHS at the moment! So glad you pushed for that repeat appointment.

I’ve read all your updates and the lovely support from those who’ve dealt with this type of thing, so I have nothing useful to add, but didn’t want to read and run!

Take it easy and keep us updated. We’re all here to offer a listening ear and a virtual unmumsnetty ((hug)) and it absolutely doesn’t matter that the whole CV thing is going on, you still need support and care while you’re going through all this, so please don’t think twice about posting about your worries.

You sound like you're coping well with it all so far.
Just to say good luck x

Thank you, you're all so kind!

Seriously, if anyone can take anything from this thread, it's that the NHS isn't "closed" because of corona, even if it might feel like that. It did feel like that to me and I didn't know if I was right to keep pushing. But it was the right thing to do, because if you need urgent non-corona attention, you will still get it. Everyone I have met in the NHS this week, from the receptionists at the UTC to the haematology doctor, has been beyond amazing. They are all fantastic and I will honestly never be able to say thank you enough!

Another one here wishing you luck OP.

I had an urgent referral under the 2 week pathway last year, also due to concerns over lymphoma, because I had problematic enlarged lymph nodes in my neck that were up for months.

Thankfully I got the all clear (I've since been diagnosed with acute myofascial TMD which caused the reaction from my nodes) but I do remember how terrifying a time it was with all the uncertainty and worry. MN was a fantastic support for me at the time and it's great to see that you're also receiving sterling advice and a lot of handholds.

You are handling this brilliantly, I was nowhere near as calm and level headed as you are coming across. You are fab and I'm in awe

Hello op just stumbled upon your thread. Wishing you the very best of luck, you sound amazing. Hope it goes well

Haha, I think I only sound calm because I'm feeling too tired to maintain any level of panic! I've been up most of the night with an upset stomach. It's better now and I was hoping to get some sleep, but the kids woke up at about 7 and were wanting to chat through the door!!

Just seen your updates and so glad you got to see someone and didn't wait. It sounds like you are getting prompt treatment. Wishing you lots of luck and stay strong.

Hope you had an ok day, OP, despite the lack of sleep and that you can get a good night tonight, and a peaceful Sunday.

Hope you are all doing okay too - the social distancing stuff is hard work, in a way it's easier to follow it now that I must! So I'm sorry for those who could get out and about and can't.

I'm doing okay, thanks! DH took the kids to the park and they let off some steam. Apparently it was not too busy and they did not have to make an effort to be distant from people! Although they saw some school friends and apparently the kids were so good about not running up to each other or asking if they could play.

If the diagnosis is confirmed as being what they think, my husband and I are thinking if it would be better that they go to stay with his parents for a little while. It would be so tricky to try to manage things with us all here, in the current situation. But I don't know if it would be right. In the best outcome it will not be necessary but I am not really hopeful about that. I just don't want to make a decision that would put people more at risk. Husband thinks it would be better (for them, for me, also for him) because there's so little one can arrange in terms of childcare right now. I'm not going to make any thread about whether it's okay to send children to grandparents though, I'm afraid it would give some posters a heart attack!!

Your situation is completely different OP and if you do make a thread on sending your kids to the GP for a while, I am sure you will get compassionate and great advice, esp.. hopefully from people who have been through it and who know from experience how it is dealing with DC and this (although these are unprecedented times).

Sleep well. All good thoughts! I am glad for you that you have GP living and in good health and close enough to send the DC too.

@agonyauntie2020 It's sweet of you to reply! It just feels wrong... GP happy (delighted in fact!) to have the kids, but they are still working and Grandpa is in a key worker job so will have exposure.

I've now blown the cover that this is not in fact a hypothetical scenario

(Sorry, to clarify - I did make a thread, but without saying that it is about my situation and without a lot of details!)

When you first mentioned the possibility of the kids going to their GPs I did think it was a good idea. It will just be like a little holiday for them but will ease the situation for you and DH. As kids tend to get it quite mildly by all accounts, GPs exposure to it through his job shouldn’t be an issue for the kids. Does GM work at home or what would the arrangement be of the DCs go to stay?

I keep saying to my DCs during the war they’d have been sent to stay with strangers and work on a farm so they should think themselves lucky!

Haha, I quite like that line!

Their grandma is a piano teacher, so she mostly works (teaches) at home or at the local church hall in usual times. Right now she is doing lots of Skype teaching! But she certainly won't be restarting face to face teaching till the restrictions are lifted (she is a member of ISM and they have categorically advised teachers that they must not).

We were actually planning to go down for Easter anyway, and they were expecting to be doing that. So I hope that it would be like a bit of a holiday for them!

If what I'm expecting does end up happening (ie confirmation of this provisional diagnosis and chemo) I would just be worried sick about the impact that it would have on them in such weird and confined circumstances. And I would also worry about DH having all the responsibilities on him. And what if he got the virus? It's not like the kids are old enough to even slightly fend for themselves with minimal supervision, so it could be a bit of a crisis.

I'm trying not to get ahead of myself but I feel like we need to plan this out. If the plan isn't needed then, great! But if it is, at least we have it.

I was also speaking with a work colleague and very close friend today... she and her husband and kids have all now had it (the parents badly, the children VERY mildly) and she was offering that in a crisis, my kids could go to her. They've just had a huge renovation done, so lots of extra room, and (because of their having had it) small risk. But I don't know! It's a lot to ask.