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.

[Theukisgreatt]

Thinking of you, OP. X

[Jourdain11]

@Vebrithien Actually, I love drawing! I haven't had time to do it for ages, except for doing the kids' birthday cards, but I want to try to get started again. We live on the top floor of an old three story building, so I have a lovely view of lots of rooftops and gardens. Lots of things to draw!

I'm also expecting a call about my appointment at some point.

DD1 just came outside the door and said daddy says your tummy is still bad, shall I make you some toast (so sweet and I was sad to have to say no!). She then gave a very big sigh and said in world-weary tones: "Are you having another baby?" She makes it sound as though I've popped one out every year!

[Tiredmum100]

Aww, bless her. I've been thinking of you OP. Hope you're feeling a bit better this morning. Its horrible waking in the night and all you've got is your own thoughts. Hopefully things will feel better now.

[MilesJuppIsMyBitch]

Morning OP! Thanks for the shout-out iVampire

Jourdain11 it does sound like they're testing you for lymphoma. I have it (like iVampire's leukaemia mine is chronic & managed), and there are so many types it'll make your head spin, but there are so many fantastic, effective treatments out there.

I've been staying off MN for my own sanity recently, but I'll check this thread. I'm not a medic, but I'll do my best to answer any questions you have from my own experience.

Lots of for you

[Jourdain11]

@MilesJuppIsMyBitch thank you so much for coming to post! Like with @iVampire, I'm so sorry that you've been through this and that it's chronic, but it is really positive to hear that there are great treatments available!

Do you mind if I ask you a couple of questions? Mainly one, actually: what were your symptoms before being diagnosed? Everything was so non-specific in my case that I originally thought it was just a virus or being a bit run down or something. Mainly just aches and pains, feeling very tired and getting out of breath, losing weight, nosebleeds and stomach ache/full tummy feeling.

Also, if you don't mind me asking again, what happened at your appointments and how long did it all take?

My GP just called and said that she spoke to the department and the registrar and they've booked me for Tuesday but they may be able to fit me in tomorrow and will let me know later today. She also said I need to get my FBC redone tomorrow regardless to check the neutrophils haven't gone lower. Bloody neutrophils!

[Hauskat]

Sorry but I haven’t read the whole thread. Just wanted to add a voice saying that you are losing weight fast and with the nosebleeds I would def want a second opinion. I DO have anxiety but I have also had doctors tell me that physical symptoms were a result of my anxiety. That you may possibly be anxious is not a good reason not to explore other more physiological causes. Was the doctor male by any chance? I would try again. I read as far as you can’t ask for specific doctors but if you say you would like a second opinion would it be possible to get that? I don’t think you should wait it out and see. A month is a long time already. But I also wouldn’t go to a hospital or to the gp in person. I don’t think you sound selfish at all.

[Hauskat]

Oops sorry! Glad you got some help op

[Jourdain11]

No need to apologise and thank you for replying anyway! Yes, the doctor was male but in truth, I think the lack of investigation was as much my fault as his. I had to pick up the kids and we were on the way home, so it was a rubbish time to talk and I was quite content to let him rush through it!

[iVampire]

I hope they do fit you in before the weekend. The waiting around when there’s unfortunately quite a high chance that something is badly wrong, but you don’t know exactly what of what can be done about it, is one of the very worst parts

[iVampire]

There is also this amazing thread

www.mumsnet.com/Talk/general_health/3827476-Cancer-support-thread-74-come-in-were-here-for-you

which welcomes those who are going through all the uncertainties of the early testing days (it’s also where Miles and I first ‘met’)

[MilesJuppIsMyBitch]

Hi Jourdain11!

My symptoms were actually very different. I'd had an odd blood-count for years (and was already being monitored by the haem dept).

I started getting lumps on my neck. Apart from that I felt fine.

I got my two week referral, and the first thing they did was a thing called a needle biopsy in my armpit. I really found it ok. They stick a needle in and try to get a sample of the lymph node.

They didn't get anything conclusive from that, so next step was to have the lymph node removed from my armpit (general anaesthetic but no overnight stay), which they then have to put in a Petri dish, pour exciting chemicals on & wait for a couple of weeks to see what happens. (Can you tell I'm not a scientist?).

Got an appointment sent through to see the haematologist, who told me I had lymphoma, but they were going to watch and wait.

The next week three more lumps popped up, so it was onto chemo.

Turned out I was stage 4, but the chemo got rid of all lumps.

I still have an enlarged spleen, so I have immunotherapy every eight weeks (although it's paused for now because of CV).

I can't do as much as I used to, but I still work (part-time), look after the kids and have a decent life.

Hope some of this helps. The waiting and uncertainty are the worst but one.

[Jourdain11]

I hope so too! Fingers crossed... I just want to know, as quickly as possible, at this point.

Thanks also for the thread link - I kind of feel like I shouldn't post there because I don't know what it is yet.... it could yet be something completely benign, although I'm trying not to get up my hopes unrealistically.

The DC have gone to school today which is far from ideal, but husband could not get the time off today. He is hopeful that they are going to have "hub" schools for the Easter hols because most of the schools have such low numbers and it's stupid to keep them all open for just a handful of kids. If that's the case he can probably extricate himself from duties quite easily!

[Jourdain11]

Miles thank you! Wow, that sounds drawn out... poor you, the waiting must have been horrible.

Interestingly, I've also had an odd blood count for years. My neutrophils have often been borderline low, although I think the lowest they ever got before was 0.9 which was not supposed to be a massive cause for concern and eventually my GP called it "idiopathic neutropenia" or something, which I think means that I just had weird blood for unknown reasons (and no, I'm not a scientist either!).

[Jourdain11]

Just got a call from them - it's tomorrow!

[iVampire]

I’m really glad that you’re not going to have to wait until next week.

Terrifying as the prospect of the appointment may be, it’s better to know.



and just in case it gets banned tomorrow for later!

[Jourdain11]

Haha, thank you - good point about the !

I am also very glad that it is tomorrow and I am actually no bothered about having to go on my own. From what they told me, it sounds like there will be a lot of waiting around between the different bits and in some ways it's easier just to keep yourself entertained!!

Thanks again

[MilesJuppIsMyBitch]

Really pleased they're bringing you in so soon.

And do visit the cancer support thread - it is definitely for people who are being investigated, as well as people who've been diagnosed.

[Jourdain11]

I have done, thank you I'm just nervous about the appointment, not sure what to expect, but I am so glad that I'm not waiting till next week.

The good thing is that I'm so tired today that I can't actually stay awake for more than about half an hour at a time.... I just keep dropping off to sleep ...... so it does limit the possibility for worrying 😂

[Stuffofawesome]

Fingers crossed for tomorrow. You're managing splendidly in strange circumstances

[Jourdain11]

Thank you! I'm not sure how excellently I'm doing, I feel like it might all hit me tomorrow and I'll completely flake out.

The kids are back from school (I still feel really bad they had to go but there was no alternative today) and nicely tired out 😉 It was nice that they at least got a bit of distraction from the whole situation.

I'm also getting myself worried because I've had a really bad tummy upset this afternoon - vomiting and needing to go to the toilet lots (sorry to be a bit graphic.....). I'm scared I've picked up a bug. But it is probably just nerves! My GP told me to call the surgery, the hospital or 111 if I was worried about anything, but it seems stupid to make a fuss about anything and everything

[agonyauntie2020]

Nerves can do a lot of things, OP and I would think if you mention this at some point tomorrow, they'll test you for what they need to in relation to your immune system.

One more here feeling relieved your appointment is tomorrow.

I think medical stuff and how you do with it cognitively happens in stages, what doesn't feel right at one point (posting on the cancer boards) should be accepted as right for that day.

Please be kind and gentle to yourself, you are very generous with others.

Virtual hugs and support for tomorrow. Great suggestions everyone has made so far about taking a notebook to write things down, books/magazines etc. If you have headphones, I would take them too. Hospitals and waiting rooms can be a bit much and as long as you can see if anyone is going to call your name, listening to a bit of music or a podcast can help you escape. Also some mints (it seems to be ok to eat/drink for these tests) and a small bottle of water.

[sproutsandparsnips]

Hi OP wishing you all the very best for tomorrow. I've just read the thread from the beginning and was very pleased to see you had sought another opinion as your symptoms were very worrying.
So, I will think of you tomorrow .

[Jourdain11]

Thank you

[Jourdain11]

I'll update how it goes. Although I'm sure it is getting boring by now, but I want to do it since you've all been so kind

[iVampire]

Not boring at all!

Make sure any devices are fully charged (or even take a charger with you ). I can’t remember how long I was there the first day, but some others have been many hours.

Try to get a name/email for someone you can write to with the 1001 questions that will occur to you just after you’ve left. Also useful contact phone numbers (unit reception/admin is often the handiest, as they can always point you in the right direction)