Support thread for those awaiting medical appts,tests and surgery

[ohyouBadBadkitten]

It seems that there is probably rather a lot of us who are impatiently waiting to see consultants, have tests or waiting for surgery. So a thread for you to vent in or post your 'hooray's'

me. Am waiting to see my cardiologist. been a bit of a catalogue of delays and getting lost in the system. I have a wonderfully supportive gp who has just calmed me down after me losing the plot a bit when I found I wasnt on the appt system.

How about you?

badkitten sorry your feeling so tired, hope things have been better today?
breastmilk glad your've got your appointment, maybe see if you can be referred to a pain clinic, I was after my last surgery and found them so helpful.
backpack can't believe the awful service from the out of hours that's crap.
girraffe don't go over doing it your body needs time to recover even if
the steroids are giving you false energy.
kitten well done for making it through first week back, it's an amazing
achievement, now try and have a restful weekend.
mad glam your've had your ECG, madness that you can't alter your appointment.
I went to see the my respiritory consultant yesterday, although it wasn't him at first just s reg that had never met me ,
He was perplexed why I wasnt on respiritory ward as had gone to see me there the day before
He let slip that my infection markers crp were higher on discharge than
In admission! Doesn't fill you with much hope does it.
Anyway after fumbling about for a while he went and got my consultant,
Had my bloods checked this morning to check crp so hopefully it's gone down.
He wanted to up the steroids again which I 'm not happy with so settled at 20 mg a day for now, also upped the methotrixate again.
He's in agreement that I need to be seen in London so have a phone appointment with my GP on Monday to discuss it.
Oh also he mentioned the persistent tachycardia and extra beat, but didn't mention doing anything about it
Sorry for the long moan again :)

LGR I hope the phone appt is fruitful. Why on earth did they let you out so soon? sounds like you also need to be reviewed by a cardiologist. You could ask your gp about that.

Super tired today. Hey ho. Am trying out a new pillow - one of those memory foam contour ones, to see if it relieves the pain in my shoulder. Don't think I can judge the results from one sleepless night!

How is everyone today?

I'm tired too. I keep waking up early, and then I can't get back to sleep. It feels like my heart is pounding. I don't think that it is, but my heart rate cannot go below 60 bpm, and that is a bit high for deep sleep. I might ask the technicians about this next month. I think the machinery is clever enough to have different settings for different times of the day.

I'm off to see my mum by the seaside with dd2, and am staying overnight. Dd1 is on a trip, and tomorrow dh has the unenviable task of supervising her homework.

Hi, how's everyone?
Haven't been on in a while. Pain at times is almost unbearable and agony :-( even on fentanyl and morphine.
Dental op cancelled for 3rd time.
Rang spinal secretary again, age said there are still people who have been waiting over a year waiting for op, and I've been waiting since July. I asked if can be sent to another hospital, she said some people can but because of my complicated history no one would take me (that's what she said)
I'm totally fed up and my positive attitude is somewhat going downhill.
Been to self catheter lessons, but failed to do it myself.
Firstly my anatomy down there is not textbook. So can't see the wee hole even with mirror. Lying on bed I can't keep my back and legs bent.
So I come away deflated.

Reeny. I can almost understand your spinal op taking a long time. It is clearly very specialised and needs a particular team of surgeons because it is complex. What can be the possible explanation for delays to your dental op though?

Oh Reeny

I can imagine being unable to self-catheterise must make everything feel worse. And whhhhhhhy did they cancel the ddental op again? :(

Kitten I hate the field tests aswell as I always think the machine is not working as I can never see the lights properly. When the DR asked me how it went the first time I replied "well it would go better if you had a machine that works" when the machine was tested it was found to be in excellent working condition.
I just find them boring now as I cant see many lights so I very rarely press the button :(

breastmilk pleased you have put an appointment on at the GP's :)

Reeny Hope you get the ops soon. I had to self catheterise once and couldn't do it. So I had to get the nurse to do it in hospital which was more embarrassing them going on the bed pan for the first time.
I had the same problem as you and could not find the wee hole. The nurse found it first time.

I had my Field test and a Goldmann test yesterday that showed my vision is extremely damaged. I have an enlarged blind spot in my left eye and it I am expected to lose my sight very quick, When I asked if my sight would last for DD starting to school in a year september the DR shook his head and said very quiet "No" I burst into tears then and luckily DP asked the question how long and we were told 3-6months if I'm lucky. He said this birthday is most likely the last time I see my birthday cards :( .

Ive done nothing but cry since that appointment, It was all through one hospital not treating me correctly and giving me treatment when I needed it. Instead they are making me go blind :( . I hate that hospital.

Ive got a lot of questions to ask the DR's/Surgeons who are treating me now. The main one is what happens to my care when I'm blind as the number 1 treatment is to save the sight as they cant control the headaches or the shunt blockages.

I don't want to live a life of darkness, I like my sight it is everything to me, I cant lose I just cant. I need it.

I will lose everything when my sight goes how will I cope?

Hope everyone is doing good.

I'm going to step away from MN altogether as I need to spend time with my family. I don't know if and when I will be back as it depends on my sight

I hope everyone gets all the treatment they deserve :)

BM how is your pain now?

sofa had to be moved for plumber. long story involving water going in to below flat and no one agreeing on the cause

Was feeling better but woken up (now) feeling strange stingy feeling in chest, hard to explain but only get it when feeling rubbish and sats drop if I walk about. Only found that out by accident. Popped my monitor on then walked back to bed. Peak flow down between 200-250. Going to have a neb to see if that helps.

backpack that is crap about the hosp :(

largeglass are you on pred?

Oh backpack :( I don't know what to say.

But please, don't go. Could you start another thread asking for other MNetters who've lost their sight in adult life to tell you how they coped?

In the meatime, though... keeping posting here as much as you need.

giraffes Frustrating bout sofa... does that mean you've got damp-type problems to make your asthma worse? I once had to dispose of one to prove to landlord that it wasn't the cause of a flea infestation.

Pain isn't too bad. I've just realised, though, I'm required at a work social this afternoon, and wondering whether I have sufficient spoons for that and for church...

Backpack. I am so so sorry.

Have you contacted the RNIB ? I know that is a very difficult step, as to do so, you are acknowledging the truth of what is happening to you. They can help you put practical things into place now that will help you. Whilst that wont change what is happening to you, it may ease some of the practicalities for you and your family.

Just popped in quickly to see how everyone is as I need to get my backside into gear and do some housework this morning whilst I have some energy.

I couldn't not comment backpack - I am so so sorry about your sight

Backpack, I'm so sorry. It is so unfair. I hope you do take OYBBK's advice and contact the RNIB helpline. You need to plan for the future.

It would also be a good idea to reach out for support and advice from other people that have lost sight as adults. I know the RNIB has a discussion forum, and I'm sure there are others. We are your friends, but I think you need contact with people that have already experienced what you are going through. They can advise you on technology to help you, and just give the emotional support that you need.

Hi its my first time posting on this thread.

I am currently being investigated for bowel cancer. I have my hospital appointment a week on Tue. I'm trying really hard not to think about it but it keep creeping in. In fact I would say it feels like its always with me like a black rain cloud.

These last few days I have started to feel really quite unwell. I had intended not to tell my dc anything but its becoming harder and harder to try and pretend everything is ok in particular now that I don't feel good.

Do you think I should say anything or carry on as I am and wait until after my appointment?

I also have to speak to my manager to arrange the time off I will need. I was going to tell him I did not want anyone to know but is this more of a pressure?

Please help I feel so lost and confused.

Oh backpack :( that is so unfair, :(
Giraffe how's your chest feeling now? Yes I'm on pred, hate it but need it :(.
breastmilk hope you had enough spoons today? I managed church and the cinema I'm shattered now.
reeny can't believe your op was cancelled again, so frustrating!
mad hope you can get the setting sorted, it's amazing that you can control heartbeats with technology.
Waves to everyone else.
Having a naughty glass of red tonight, then to bed.

Hi slippersandpjs and welcome... though for your sake, I do wish you weren't here :(

I'm so, so sorry you've got the worry of cancer hanging over you. One thing I would say at the outset... please, don't allow some of our horror stories about delayed tests and misplaced referral letters to frighten you. Most of the rest of us on this thread have very rare and unusual conditions but the way the NHS manages suspected cancer is different... all sorts of protocols and procedures come into force and the coordination and communication is usually very good.

But waiting is awful, I agree. Personally speaking, I've found the waiting for tests and treatments worse than the aftermath of diagnosis and surgery (though this thread only starts four days before my surgery which came three years after diagnosis, so you'll have to take my word for it )... at least knowing what is or isn't wrong can to some extent be easier than dealing with the unknown. There were points when I resorted to valium

As for who you tell you're being investigated for cancer... at this stage, I would advise telling

a) only people who you are 110% sure would be kind and supportive and helpful - do you have a good friend who'd be there for you?
and
b) only those who absolutely neeeeeed to know where you're going on Tuesday - personally speaking, I would tell a manager as little as possible

As for DCs... I don't know. I don't think I'm best placed to comment as I was diagnosed before either of mine were born, and was in my 30s before my mum became seriously ill. How many DCs do you have, and how old are they? I'm sure others will come along in a minute with their experiences...

Hi slippers, and welcome to the thread.

The decision about telling people about serious illness is such a personal thing, and is even harder when it comes to children. In my case, I was having a heart operation which was high risk, and would put me in hospital for at least a week. My children are 8 and 11, so they needed to be told beforehand, but not too far in advance. My aim was 2 weeks before the op, but it actually was longer because my date was later than I predicted. The children were distressed, but we also had the chance to spend special family time together.

In your case, I would wait until your appointment before you tell anyone beyond very close friends and family. Then you will have more of an idea of your diagnosis, and treatment plan. But that is just me. The decision of when to tell children depends on their age. If they are older then they may have an inkling anyway. Once again that is just me.

All the best for your appointment. I hope you get some answers soon.

BM no thtey cant decide if it is my flat or next door that has leaked in to lady belows flat - all very confusing.

LGR yup hate pred too. sensitive teeth bluugh

had some sort of new allergy tonight. ate something out a graze box and have tichy tongue, tight throat, wee bumps on lips and then as evening progressed tummy cramps. Had some piriton. It is somthing new everyday atm.

giraffes We've recently had an absolute genius of a plumber solve our ten year long saga of the mystery leak. A bit of a trek from you, but he works up and down the country, charges no more than his less-skilled colleagues and I'm sure would come to Glasgow if you paid the petrol...

How's everyone this morning? I'm still in pain, and just had a very confusing email from a friend. I've posted about it as an AIBU which is just bitchy and horrible of me. Argh. Why can I not think before I post? Sorry.

I'm the same about posting BM - sometimes things feel very urgent and I can be rather impetuous (says the lady who just ranted down the phone at her dh because he moved dds orthodontist appt to a ridiculous time 2 months after its due. Rant was well deserved but not while dh was waiting for a plane. oops)

I am doing ok. My pillow seems to be helping my shoulder I think and getting used to it, so I slept pretty well.

Welcome slippers. I'd tell your kids that you arent feeling well and so you are seeing a doctor. i wouldnt pass on your fears though. I hope the appointment tomorrow goes well. Have you had any tests yet?

Happy St George's day .

I have my own reasons for being thankful today for my OHS being over, and hoping all the best for my ablation which I'm cacking myself about. I know today has many meanings for people in England, and they are not all numpties, but some are. Today is for me to think of the all the talented staff that have helped me get to where I am today, and hopefully for a healthy future. I may moan sometimes, I'm nearly always often scared, but I am very grateful.

Sorry, will stop rambling on, and no, I'm not on the .

What a lovely yet immensely challenging post. Mad you have taught me so much about staying positive throughout all this. DD and I were talking about [dragons]s today, too.

I am thankful today

... that I am alive. I could have been Fabrice Muamba or the woman who just died in the London marathon or the member here who died last year :(

... that I was diagnosed. For years I persuaded doctors that my symptoms were simply a feature of my madness stress-related. It took my current rather brilliant GP and an extremely wise and clever friend to persuade me that this mightn't be the case.

... that I am sufficiently intelligent and literate and educated to know what investigations and surgery I needed to consider, with the bloodymindedness confidence to coordinate my own care and to sort out cockups kinks in the system myself.

... for my DH and kids, who are the most wonderful people on earth. And for my family and friends who have been so dedicatedly supportive during these past few weeks.

... for this thread, which has been a far greater source of emotional support than anything else. Until this thread came along, I'd thought I was alone in most of what I was feeling and experiencing. Now I know that's not the case.

We all have our dragons to slay but dd2 would not allow this to happen because she believes that they are an endangered species.

Hello,
Hope everyone is as well as possible.
Since serious chronic health problems and life threatening illnesses, it has changed my view on life.
I came across Buddhism a few years ago, and I try to use some of the techniques to live a positive mindful life.
My favourite words from Buddhism, I use a lot. The past is gone, cannot change it, accept it and let it go, the future is yet to come and anything could happen, tomorrow may never come. So live now, right now, in the present moment as mindfully as possible.

I'm also using other Buddhism theories and techniques to live a full filling life as possible.
Suffering will happen to everyone. We have to accept that. We can't run away from it. It will happen (in some form or another). So we have to realise that and accept that. It's how we deal with it that matters.
Everyone, wants to be happy and free from suffering, so thinking of that oneness that we all have in common.

It's too detailed to mention it all here, but I find it really helps me.
Some people completely shove the idea off when they hear 'buddhism'. They may think oh no not my thing I'm not religious, before they know anything about it.
You don't have to be religious to use the ideas.
I would really recommend looking into it and the techniques and theories. They use Buddhism ideas in CBT and things like that.

A book I'm currently reading is 'Buddhism for Mothers'. It's really good. I've hired it from my library before buying it.

Just fed up waiting to see what is happening with my kidney. It hurts constantly, from a dull ache to a horrible renal colic, and everything in between. I have to wait to speak to my own GP about how to deal with the nausea, tiredness and pain I have to deal with as a part of this, and also my arthritis, which seems to be flaring a bit at the moment, all my fingers and toes are so sensitive. It's making me a grumpy mummy, and the kids of course notice and start to act up more, meaning I get stressed and anxious, so been popping my diazepam to try to stop myself getting into a manic episode on top of everything else.

Could do with something to focus on to help me cope, so might look into the book recommendation.