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.

BTW is it worth asking MNHQ to change the thread title? It wasn’t selfish in the first place and now that things have moved on, an edit might be helpful.

Feeling much better, thanks! Temperature is down and the IV fluids (yes, Miles, I have been on them) have perked me up a lot. I'm actually feeling better now than I have been for about a week!

Spoke to my DM earlier (and my step dad). There was about 20 minutes where I feared she was about to leap on a train.... at some point she appeared with a suitcase which she has apparently been keeping "packed and ready to go" since the lockdown came into force (where is she intending to go with it, I wonder??). She would never recover if I died before she was able to see me again, and so on. Eventually I was able to convince her that I had no intention of dying before she is able to see me again and she calmed down and decided that she will sort out some boxes of provisions, as she hears the rationing in London is very bad! (I don't know what they are reporting on the French news.) Probably because "this fat mayor" hasn't organised the food well. (I think she meant BoJo rather than Sadiq Khan....) She is a lovely, caring mum and I wouldn't swap her for worlds, but she is a master of drama......! But this is the way that she handles hard situations.

I hope I should get to go home tomorrow, all continuing to be well

Ha that made me laugh (fat mayor ) but your mum is a drama queen isn't she!

Glad to read your updates, OP and very glad you are feeling better than you have in a week. Brilliant work with your DC1 and your DM. The hardest parts of telling ppl are pretty much well underway now, along with getting used to the idea yourself and planning for the weeks to come. Well done!!! Fingers crossed for a decent night's sleep, discharge tomorrow and a swift diagnosis and treatment plan.

Good morning!

I hope you slept well, that your temperature continues normal, and they they let you out!

Weren’t you due to be seen as an outpatient today anyhow? Perhaps they can cover whatever stuff is needed where you are, then wave you off until actual treatment starts

I have to say, your DMum sounds fab - I bet life has always been vibrant near her!

Temperature down and I am good to go shortly - yay!

I was due to have bloods done today in outpatients, but since they are the same ones I am being checked before discharge, the appointment is not necessary.

I've also just been informed that my bone marrow results will be back tomorrow afternoon, so it is a day earlier than I expected. Eek.

But I feel better now because I'm well and truly mentally prepared for the worst news, basically, and if it turns out to be anything more benign it will just be a very pleasant surprise.

My mum is once again declaring her intention to jump on a train - apparently there is one at quarter past 4! I think I've managed to persuade her that it is a crazy idea (and I'm genuinely not sure they would allow it, but she can talk people into anything to tell the truth). She would be risking herself and others, she couldn't actually see me "properly" and the trains are ££££. But I'm still terrified that her next telephone call will be "I'm on the way!" (Or, worse still, "j'arrive!").

If she arrives, where will you put her?

Glad you’re on your way home. Hope for good news tomorrow. Phone consultation or face to face?

Glad you're well enough to go home very soon!
Best of luck for your results.

Phone consultation - I have a face-to-face appointment booked for Friday, unless there is something unexpected to cause a change of plan.

A nurse told me today that, because of the corona situation, some things are being stuck together to avoid extra appointments. So if my diagnosis were to be as expected and treatment had to start quickly, then there probably wouldn't be a preparatory appointment where they show you everything and "put the line in" (I forgot to ask what this means ) but they would do it all at once. It sounds like a bit of a whirlwind!

Stepfather just messaged me, that he has managed to convince DM that it will be better to "wait a few weeks". Thank goodness!

Hello OP. I’ve been reading from the start and I’m sorry you’re going through this. My daughter had cancer as a baby and in her case the ‘line’ was the line through which chemo is administered. Sending you strength, you sound like a wonderful person

By putting the line in she probably means a central line. It’s more comfortable than repeat cannula and helps protect your veins from some of the more viscous chemo.

Oh, thanks for this!

That makes sense. I was worried that my arms are starting to feel like pin cushions!

Hi just wanted to say i think you are amazing with the way you are coping with everything .

Feeling like a pin cushion is par for the course in the early days - they always seem to be after more blood!

I hope the phone consultation goes well

The phone consultation went okay. The biopsy did confirm the provisional diagnosis of AML, but I feel like I was expecting it and it hasn't come as a horrible shock. Maybe it is going to hit me again later - but I almost feel better to know what I'm dealing with. Before it was trying not to get my hopes up that it could be something less serious after all.... and that was hard work!

I have my appointment on Friday in which we'll discuss treatments and apparently I will meet a nurse and have an opportunity to ask questions. They've also confirmed that I will be able to be treated at the current hospital, since they are continuing with cancer treatments there (and indeed, I think, moving others' treatment there too). Since the hospital is really close to our home, in makes life a lot easier!

It's probably time to make a decision about DC's arrangements and DH and I are going to talk it through later this evening. I know DD1 won't want to go to grandparents though She's already said that she doesn't want to go away!

I am slightly worried about the AML chemo - it sounds so tough and I'm worried how difficult it may be to cope. I'm also supposed to be WFH (although my GP issued me a 2 weeks sick note last week and said she's happy to extend it as much as I need). I don't know how much, if any, work it will be realistic to expect I can do over the next months. But I don't want to be lazy either! Well, these are all questions for the appointment, I guess....

Thanks to all who have been so supportive.

Oh OP. I'm so sorry. I can imagine it must be a weird relief in some ways to know for sure rather than wondering. But also sad news. Best of luck with your treatment and all the practical arrangements. My advice is to take as much sick leave as you need and don't worry about working unless you want to (for a bit of normality, distraction etc). Otherwise just focus on rest and time with family.

Thank you I think you're probably right about the sick leave. But I'll see what's advised! It's all so hard to plan in the current situation anyway.

Oh what a difficult time for you all. I really wouldn't give work a second thought if it was me. Seriously, no-one will expect it.

I had Covid and I was affected for about 2 weeks, and Im still loosing weight, still pretty wiped out. So its entirely possible you have had Covid. It doesnt matter you have to be very sick to go to hospital or get tested so you will never know until we get the antibody tests. If it is Covid you are definitely over the worst. The best thing is the NHS 111 website.

I know what you mean about big getting easier when you know what you’re up against.

Do you know if you have any of the mutations? I’m less sure of the role in AML, but I think if you have it, it increases the treatment options.

As they said they wanted to reduce the number of visits to the hospital, will Friday be F2F or by phone?

If you want to start reading up, then I recommend Blood Cancer UK - which was called Bloodwise until today, what timing! - or CRUK. There’s also Leukaemia Care and Macmillan

it’s been a dizzying week for you. I think you’ve got through it really well - don’t worry if you crash and burn later. Just be kind to yourself right now

@Jourdain11 I've been following your thread, and am in awe of you and your good humour and selflessness.

A dear friend of mine has a different blood cancer - incurable and life shortening - NOT AML, I hasten to add - a much rarer one, so not much work on research to cure it ... (it's under the umbrella of non-Hodgkins lymphoma)

Anyway, she was told that during the initial chemo (to be followed by stem cell therapy) it was possible to keep working. For her, it's the stem cell treatment that will need to be done in complete isolation etc. But they're doing watch & wait with the chemo, and have been for over 2 years - which is good if nerve wracking.

So there may be a possibility of keeping a semblance of normal working for periods of the chemo ... see what your oncology nurse says. It may be important for you to keep that part of your life as normal as it's possible to be. OTOH, there's no compulsion to do so.

Anyway, just wanted to pass that on, and good luck

So, it was quite detailed and I'm pretty sure I missed a few things. But what I definitely did catch was that the test detected some protein CD33 which means I should have another drug alongside the chemotherapy.

Because of my age and previous good health and lack of any other medical conditions, he says the recommended treatment course would be Remission Induction followed by Consolidation. And it is likely to be in hospital for most of, or a big chunk of the time during the treatment due to the effect on health, risk for infection, etc.

He also pointed me to the Blood Cancer pages (although he obviously didn't know the new name!!!!) and basically the plan is that on Friday (which is face-to-face) I consent to treatment and we get through as much of the preliminary stuff as possible. My low neutrophils are apparently "worrying" and they do not wish to hang around.

It was a bit non-stop! I feel like I didn't take in half of it. But hopefully on Friday it will be easier to understand things and think of what questions to ask...

Thank you for all your support, it has honestly kept me sane (as sane as I ever am!) this last week It has been hard in these circles not to be seeing people and getting a bit of normality!

You're amazing. Good luck.

My friend says she deals with it by being pragmatic, and taking it step by step.

Awww, thank you But actually, I think anyone who is surviving at the moment without going round the bend is pretty amazing. I'm currently lying on the sofa bed in a pretty un-amazing way watching Downton and eating mint choc chip ice cream (one of DD2's "essential items" from a family shopping trip earlier, I'm told!).

I'm not sure re. the lymphoma and leukaemia chemo if it is similar or a bit different, but I think the latter? As I understand it, the first two cycles, the "Induction", is full on, for AML...

Period drama and ice cream - perfect! That's my comforting combo of choice atm! DD2 is right about essentials