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?

Reeny my goodness... you're coping with so much. I admire you. Will the surgery you're waiting for make any difference to your mobility?

I'm really struggling here :( Took the DCs to the playground and had a lovely cup of coffee but have now crashed, physically and emotionally. Saying 'I don't think I can cope' is meaningless both because there's a screen between me and everyone on this thread and because, well.. what option do I have? Chocolate and Valium...

reeny, hopefully more will join the thread, who you can swap wheelchair experiences with.

Breastmilk, even when we really cant cope, time still passes until we can again. In the meantime chocolate and valium sound like useful tools. I would think you a very strange person indeed if you were coping ok with this. it is ok not to cope for a bit.

I'll join if I can.

Had my major surgery to have 1st rib removed and one of the scalene neck muscles in Sept for Thoracic Outlet SYndrome. Developed large haemopneumo thorax and had to have emergency lung surgery.

Still have flashbacks of chest drains under local that hadn't worked (sorry Largeglass, I know this is nothing compared to you), ICU, arterial line.

Now am having pelvic floor repair next Monday 26th due to bowel and bladder prolapse.

Still not been at work since Nov 2010 and can hardly do anything with my son (AS) due to nerve damage.

This is nothing compared to most of you but my previous 2 surgeries have left me feeling so very nervous of surgery whereas before the complications I was not at all worried about having a rib removed!

Thanks. And thank you for all your support. I'm going to get into the bath with the anti-MRSA pre-operative foamy stuff. It actually smells quite nice. I've decided not to tell DH that I'm not actually medically required to have three baths a day

Hi Ben10 - we crossed posts.

What you've been through sounds awful... very scary.

I've sometimes had flashbacks of frightening or unexpected procedures

Has the nerve damage left you in pain? How are you managing with not being able to look after your son?

of courese you can ben10 :) i am not surprised that you are feeling nervous. Have you conveyed that to the consultant? dont forget to tell the anaesthetist too of your worries. When I had my tonsils out yonks ago I told him how I was terrified of being sick and so I got lots of anti-sickness stuff. . Hopefully not too long to wait now, though it must seem an age.

Breastmilk - that sounds like handy stuff for germy kids I hope you have a lovely bth. Funny that it smells nice!

Also (and apologies if I'm stating what you already know) most anaesthetists will do general anaesthetics for people who are particularly nervous about local anaesthesia or conscious sedation...

Thanks all. The nerve damage is from the rib pressing on my nerves for x number of years and from the surgery itself. I thought that I'd be more recovered from the rib resection now as it was 6 months ago but the TOS facebook group I'm on shows this is pretty normal recovery. My hand is left freezing cold and numb and my chest burns constantly if I miss my tablet. I have fluctuating symptoms and sometimes can't walk more than 15 mins without pain and then other times I can manage. My face goes numb if I do any thing with my arms out for too long, like driving or computers. I think I am concerned as my arterial symptoms are worse on the left hand side (no blood flow when I raise my arm) and I don;t want to have to go through it again.

I have private insurance still and the emergency surgery was done at a top London hospital. The surgeon was the best in the country at the surgery I needed apparently but the aftercare left much to be desired when I left ICU My parents actually made a formal complaint. I think that is still in my mind too.

I have my pre-op appt on Monday so will speak with them then about my concerns. It is at my local private hospital who nursed me fantastically after the first op so I know that they won't leave me with no pain relief, no bed pain when immobile etc etc.......

I am having a GA again and I was very sick from the morphine PCA the first time - I went through about 8 different anti-emetics. I didn't have one the second time and had lots of anti-emetics which did do the trick.

Sorry, that was rather longer than expected

ben totally understand your nevousness, I get scared too, the GA's usually ok but last couple of opps pain afterwards was indiscribable,
I still have some nerve pain and numbness, after the thoracotomy's
I think from what I've read it takes a while to go.
My main scar is also very red and sore, resorted to buying stretchy crop tops as I think it's my bra aggravating it.
breastmilk I think 3 long baths a day perfectly reasonable :) hope all goes well Tuesday.
reenypip not a wheelchair user but did have to use one for a few weeks when my balance went, borrowed one and it was awful, so low to the ground and uncomfortable. I worked with a young man, who used a wheelchair before I had the dt's we managed to fundraise to get him an off road wheelchair which he loved.

Carry on. I don't think there's anyone on here who'll complain about a long post... what a difficult position you're in.

I really hope that you'll need less pain relief this time around. Morphine has never made me sick but has always given me this strange sensation of being stuck to the ceiling watching everyone. Or maybe I'm just mad. Really hope that Monday is reassuring.

I'm so hugely grateful for this thread. Calmer now, at least for now...

LargeGlass Thanks. It sounds as though you've been completely to hell and back...

breastmilk The anticipation of surgery is the horrid bit as you can't do anything about it. I think that medically prescribed baths are vitally necessary even if they dont have MRSA treatment in them!

I'm sure the pain won't be nearly the same but then my whole perception of pain has been changed by lung and bone pain...

(((hugs))) to the rest of you. Sorry got to stop typing now

Some people here really have been through the wringer.

When I was waiting for my heart surgery, I met a person in the park (another dog owner) who had been through a double valve replacement. I really found talking to her helped calm me down, and it was reassuring meeting someone who had survived heart surgery. One of the things that she said to me was that the pain from a sternectomy was not too bad, and much to my suprise, she was right. I think it is because there are not too many nerves where they cut.

She had previously had lung surgery, and said that the pain after that was unbearable, and that heart surgery was a doddle compared to lung. Her words resonated with me when I read Largered's post. One of the things they have in common is the bastard scar. Mine comes just below my throat, is a deep red/purple colour and most of my clothes show it, so can't be worn. One of the good things about having a female surgeon was that she didn't minimise the scar problem. She was frank before the op, and said that the scarring would be large, but was unavoidable. At least I didn't get an unpleasant surprise.

I did post a previous topic on here about MRSA and C diff. After my spine and foot op, I caught MRSA all over body and in my wounds, and got into my blood causing septacemia, possibly from central / femoral line. I also caught c diff at the same time.
It was horrible. But I'm so glad I survived. But I think more research is needed into the after effects of it, as I've deteriated further since it happened.
That's why I'm partly nervous about the recovery of my next op.

www.butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf

The spoon theory is fab! A lot of people don't understand how chronic illness affects us, I found this brilliant and I've handed it to family members to try help them understand. It made me cry. I'm obsessed with spoons now lol and I've even made my own jewellery.

Also this is excellent too, describes exactly me.

www.butyoudontlooksick.com/articles/written-by-christine/chronic_illness_feelings/

Hi

I was told about this thread by Breastmilk :)

I had 3 brain surgeries last week (I have threads about them on here so I won't bore you all again)

I am currently enjoying this weekend then I need to deicide whether I am going to have another brain surgery or eye surgery (most likely brain surgery)

I had a MRI today to see what my brain is playin at as I either had a seizure or my something else the day I fell downstairs. I find out the true reasons on Monday why all of this mess on has started.

I am so nervous as I don't want to have seizures and I already have a "fake" tumour (one of my ilnesses mimics a tumour). My Neuro surgeon thinks it could either be Seizures caused by my illness or a real tumour :( but surely he would have seen the tumour when he went into my brain last week?

I hope surgery goes well on Tuesday Breastmilk

I use the spoon theory daily, I use it especially to people who do not understand my illness :)

I like the spoon theory, too. But really, there are a lot of people out there who will never ever understand chronic illness, pain, fatigue or unexpectedly fluctuating symptoms. I once had a long conversation fairweather friend in which I thought she was really trying to appreciate how I felt... she then asked me to replay the favour of listening by going out with her that evening... right after I'd told her that I just cannot, cannot, cannot leave the house after that time.

But a thoughtful and very wise friend once said that it's not that people cannot and don't want to understand, it's that they can't bear the thought of something similar happening to them. Whereas countries such as Niger and Swaziland and Afghanistan have female life expectancies of around 40ish, women in Britain are not expected to suffer serious of life-threatening illnesses in their 40s, 30s or 20s. Even my cardiologist said to me 'I really don't like having this conversation [about the possibility for sudden death] with you, Breastmilk. It's too much for someone so young to face.'

So yes, the spoon theory is scary because anyone, anyone could lose their spoons...

Reeny yes, MRSA/C-diff... scary, I agree. I've been scrubbing DD's rubber sucky with the decolonisation foam in an attempt to help the kids not to worry. But it all sounds such a stressful time for you. Thinking of you..

Mad About the scarring... I've heard that John Lewis and such places offer free 'personal shopper' consultations, and am wondering whether they'd offer any creative advice to women with scars to hide? I'm a bit nervous about asking, though, at the moment.

Backpack Scary, scary about the tumour possibility. But as you say, hrd to imagine that it would have been undetected after all you've been through this far. And the MRI will show for definite either way, I would guess. And in terms of the waiting... I'm sure they would get back to you like a bullet if they thought the MRI did show one.

Feeling so grim this morning. Just so ill, and so down.

I want to get the church but they'll all be sympathetic and I'll cry. Every time someone tells me that their great uncle had the surgery in his 70s and lived for another ten years and even did the gardening and played carpet bowls, I just want to scream about how I'm only thirtyfuckingfour, have no interest in gardening and would prefer to compete in the Tour De France than roll a sodding ball across the floor.

I've already utterly melted down because DS has a new curl in his hair and he's so unbelievably beautiful.

I'll go and put the porridge on.

Thanks for listening.

Breastmilk - hang in there.

Thanks.

How are you doing?

I'm ok today. Havent got out of bed - and had a bacon sarnie bought to me :) life is much easier in bed! pondering timings of chest x-ray tomorrow. Its a drop in clinic, but to get a lift I need to go during my working hours. I dont want to miss work if I can help it, but it would be much easier with a lift.

also need to speak to consultants secretary in the am - again during working hours and she seems to be difficult to get hold of. Things are never simple.

What scares me about all of this chasing round for appointments, test results, secretaries etc... how do people who can't read or use the phone manage? I suspect they don't. Perhaps that's part of why those with less education die young? Bleak thought.

But kitten good luck in the morning. Go with the easy option and get a lift to the X-ray.

How's everyone else?

Still feeling pretty awful. But not long now. Less than 48 hours.