Support thread for those awaiting (and undergoing and recovering from) medical appointments,tests and surgery: PART TWO

[BreastmilkDoesAFabLatte]

This is a continuation of this thread, started a few months back by ohyouBadBadkitten as "a thread for you to vent in or post your 'hooray's'". Everyone is welcome, regardless of the nature or duration of their illnesses and whether or not they have a diagnosis. The last thread dealt with a real diversity of long-term and acute conditions, as well as many of the mental health challenges and fertility questions commonly associated with them.

We should probably add the standard sort of disclaimer about not necessarily being qualified or insured to offer proper medical advice, which means that if your symptoms start to sound a bit scary you'll get a few of us rather assertively shoving you in the direction of your local A&E department. As madsometimes puts it, "A&E for Mumsnetters would have Boden medical gowns, Farrow & Ball paint schemes and fruit shoot free vending machines selling organic elderflower presse. Pinot Grigio would be dispensed at wine o'clock. There would be public information posters warning about the dangers of googling Dragon Butter... the injuries resulting from Friday night threads would be quite horrific." However, we all know the reality of medical emeregncies to be signifiantly more stresfull than that, so if it's not life-threaningly urgent, we'll hold your hand and chat and support and speculate on the basis of the reasonably half-informed knowledge gained by our own life experiences.

Welcome. The kettle is on...

BM, how did your appointment with your GP go the other day?

Backpack, if you're lurking, it would be great to hear from you.

TeamGB - good for you!!! what is life if we don't seize opportunities and try out new things if we can? What method of transport does your commute use? I think the important key to getting the most out of it and enjoying it is to make sure that you view rest times as importantly as work times. How long is the course?

gp wasnt too concerned about the HR - he said it can be normal for some people - yes that is true, but its not normal for me. But he said the important thing was if it was causing symptoms and as its causing palpitations and dizziness I'm to see what happens when I cut down the dose. We struggled to work out which dose to cut down, so we settled on the evening one as thats when I'm brady. So we shall see.
I know it is helping me function - I had to stand still a lot this afternoon and didnt have to ask to sit down. So that is good :) wish the headache would go away though

Thanks for the encouragement OYGGB. The course runs from September - late June, and I will need to take a bus to the train station, train and then tube. The train and tube parts are only 15 minutes each, but with connections and waiting it will be one hour. I'm really looking forward to the course, even if it doesn't lead to anything. I have never studied physics before, and only chemistry to GCSE, so it will be a challenge. I've just told dd1 that I'm starting at college, and she told me not to be so silly because I'm too old. However, she did like the idea of us being study partners.

You do seem to be very sensitive to heart medication. I wouldn't be happy about a hr below 50 either. When I first started on my betablocker, I had a terrible persistent headache and a weird tingling in my wrist, but after a few weeks the side effects went, never to reappear. I suppose the only other options are to email your consultant, if cutting your evening dose doesn't work.

OYGGB thanks for the coal tar advice. I've bathed in it twice this week and it seems to be quite good at clearing the extra skin, which tbh always feels like half the battle! i can deal with the redness and soreness, but I absolutely hate shedding skin everywhere, especially on my head.

pavlov so sorry you have chronic back pain. it used to be the thing that went wrong with my body when put under stress and i spent days laid up in pain with it. i hope that you become confident in the decision about surgery.

i don't know if you've tried it, or it's suitable for your condition but i had infra red light treatment on mine, and a very good osteopath. when mine goes, my shoulder and arm down to my fingers loses sensation except for constant pins and needles, so the osteopathy really helps.

teamGB i went to uni a bit late and changed career - it was incredible. one of the best things was that i knew why i was there and was very prepared to work hard and take every opportunity. most of the younger students loved their course but also felt the pressure of leading the "student life" which inevitably led to lower grades than t hey were capable of,but they had fun! i think being a mature student is brilliant and there was a lot of support at my unis for me - both financial and pastoral, so go for it! also,many employers would be delighted to find they could employ someone with qualifications + life experience on a graduate-type salary. 'twould be very good for their business under the current economic problems to have someone who they didn't have to put so much effort into supporting. (crap for the teens I know, but you should take full advantage of it).

Tmc, that's great :) you may find it helpful to increase the frequency.
Another thing that has helped is the tub of coconut oil you can get from holland and Barrett. Rub it onto your scalp and then wrap your head in cling film for a couple of hours. It makes the scale much easier to come out and then the topical treatments can get to where they are needed. Out of curiosity, do you still get back pain?

Mad, connections are always the nuisance bit with commuting aren't they. Perhaps viewing it as time out for yourself might help?

I think the thing with the hr med, is that naturally at night when I'm sat quietly and all is well etc my hr is quite low. I will contact my consultant if it doesn't settle. Tonight I'm trying postponing my dose until bed time and then take the half dose, so that I still have cover by the time I have my morning med.

Mad, have pmed you.

thanks oyggb i've got to go to H&B next week, so i'll grab some. I had some lovely coconut moisturiser that worked for awhile, so fingers crossed the oil will. i haven't had the chronic pain recently, but a few twinges. doesn't feel like the same thing though. the pain is i think a hangover from a very old injury, so don't expect to be free of it for much longer. it tends to flair every 6 months or so.

TMC I was seeing an osteo through GP but he was some sort of, i don't know, saw himself as a doctor and gave advice and directed me to other places (he did refer me to his boss who referred me for MRI so not all bad) but did not do any hands on work after the first two sessions when he vaguely tried acupuncture. I sort of got the impression that osteopaths did not really do anything! I now know that is not true and others I know who have some back issues have been referred to him too and their view is that he is useless! And people who have seen proper osteopaths who give good reviews so maybe I will try again.

I do have shingles. Not bad. Not really ill, have felt a little off colour, and have some face/head pain but nothing really bad, and luckily, I am already on tramadol/paracetemol and took some diclofenac as did too much walking on friday, so probably did not see the effects as much! rash is pretty minor. So should not be a huge strain on my health resources.

I received another letter from the STBXconsultant yesterday. It turns out that the recent terrifying diagnosis was an error... caused partly by syntactic ambiguity and the rather unusual use of inverted commas in the consultant's letter, compounded by the failure of the consultant to send six months worth of letters to my GP rendering the GP unable to decipher the grammatical idiosyncracies of the consultant, and blown into a crisis by me jumping to the conclusion of the worse-case scenario.

In other words, it was certainly a horrific cock-up by the hospital, but I did make everything worse by panicking.

The consultant has apologised for the long series of admin glitches which has led to this point, but sounded utterly resentful of being made to take responsibility for what was primarily his secretary's mistakes. PALS have assured me that the hospital admin systems are working to locate all the lost notes and letters and post them to the GP and new consultant at the new hospital.

I'm just relieved not to be dying. Too relieved to be angry.

I know that I just need to get used to this happening. From what I've heard and read from others in my position, all such admin gliches and delays are simply par for the course and an everyday part of living with chronic illness. But how I get used to that I don't know. I fully accept that I need more help with all of this. But the reality is that such 'help' simply doesn't exist... I'm either too old or too young, or have too rare a diagnosis to be eligible for any of the 'specialised' mental health 'support' 'services' out there at all, and the generic services just don't sufficiently seem to grasp how I'm feeling, and I don't really qualify under mental health as my anxiety is pretty much specific to situations such as this. But I'm just now too tired to work out how I respond to all that.

I just need a very relieved vat bottle glass of , and I want very much to thank you all for your support.

I feel an utter twat, I really do. But thank you, all of you, for your support.

I'll catch up with this thread once the DCs are in bed and I've found the corkscrew

raises glass of to BM and offers a dollop of rather dubious raspberry sponge :)

I can't believe they put you though this (well I can believe it) your idiot old consultant probably had no idea of the nightmare that he and his secretary started.

You probably do need support, but you know what, I reckon anyone would in your situation, so dont you dare to be hard on yourself for that. It is an odd person indeed who can swan through substantial chronic illness without worry or stress. It is completely normal while you get a handle on life changing stuff.

Are there any online support groups for your condition? Its not the same as being face to face, but they'd have an idea of a little of the stuff you are going through?

In terms of online support, I don't think I'd ever find better than this thread. You and mad/teamGB come so close to my experience it's almost (or maybe is) divinely-ordained, and so many others have been equally as supportive. And your sponge cake was yummy too. Thanks. Just cooking for the whole crowd of the family but will catch up later...

Here, here OYGGB - takes a glug sip of and toasts BM.

Your complications must have been rather similar to my non-existent (I hope) afib - an admin error. Where your hospital went wrong is by not having any specialist nurses that can be called up. The arrythmia nurse that I spoke to is funded by the BHF, and it's his job to explain all aspects of conditions to patients, and liaise with consultants where necessary. Of course, he's not available out of hours or at weekends, but he did manage to calm me down when I went into panic mode. I seem to remember that the cock-up in my notes happened at a weekend too .

I'm so glad to hear that our worst fears have not been realised now about that bike...

About that bike... I'm working somewhere that'd be a very straightforward bike ride away... I'm very tempted, though still very nervous about cycling again. Though that said, I'm still shaking from the events of last week...

I think you're right in your appraisal of the hospital set-up... it seemed as though nobody, nobody but the consultant was able to answer any questions on anything. A lot of pressure on one person, aside from anything else.

It's great to hear about your study plans. My guess would be that you'll breeze through the Access course, as you just come across on here as fearsomely bright and clearly already very educated. I mean, you already seem to understand the maths behind aortic z-scores, and that's beyond the level of scientific literacy of most first year undergrads.

OYBBK/GGB That cake was lovely and went so nicely with the Pinot. Can I have the recipe? And how was your holiday?

Pavlov TMC Reeny

Backpack

I have stopped all my meds. Cold turkey. I say that. I am anticipating that I will need tramadol this evening, not for back pain today, but due to dependence i tried to stop a week ago, within 12 hours, i was feeling very ill and very anxious/horribly depressed (i am guessing depressed, i felt a morbid fear of the future in the middle of the night, everything felt wrong and I felt scared. Took a tramadol, felt ok again I am vaguely considering a glug glass of wine to replace it.

I have found what helps. Swimming. I had stopped pretty much doing all exercise apart from now doing the physio stuff. It happened by chance, as I was taking the kids for a swim with DH and decided to try a length. walked much better afterwards and today I have been walking without a crutch and went to the beach with both children and just me and we went in the sea (i paddled). I took hardly anything to the beach, so am learning that it is not all or nothing, but a compromise of what I can do.

I just dont want the meds. I dont like them, i dont like how i feel, i dont like not being able to reduce or increase as I need without it messing with me head/body/children. I am using heat/ice/exercise and going back to basics with the pain meds. I cant wait to see gp yet again, or physio who cant advise me. I have not told DH as he won't be happy. But, as soon as I feel clucky and angsty with the children I will not go on, I will do the 'weaning' but if I can go 24 hours without any, that is a first for a long time (only 3 hours to go!).

Er, do be careful. I mean, the thought of being dependent on meds would scare me as well... but stopping cold turkey isn't always advisable, for a number of reasons.

I'm glad the swimming helps, though. Could you get to the pool more often?

Can I come in please? I'm in a bit of a panic as I went to the GP today about a nasty tummy bug and side pain and she noticed during examining me that my womb is much larger and harder than it should be. She is booking me in for an urgent scan and said its likely to be fibroids but my head is spinning with all the things it might be. I am 48 and peri and have been on the mini pill for 4 years so I am unlikely to be pg and she listened for a foetus anyway and didn't hear anything but I think I might just POAS to rule it out. If I still wasn't so queasy I might be tempted to have some wine.

bm I willbe careful. Feeling like I have a cold, suspect it is withdrawal! How bad is that?! So, as I am feeling generally rough and back actually is hurting this evening I have taken one tramadol and feel soooo much better. Which it would I guess whether it's a cold or withdrawal. But, that is one since 10pm on Sunday, so even if I have one every day to wean off that is still better than 4 x daily.

whatkungfuchange hello! You are very welcome here but sorry you have to be. Good at your gp spotted it and is proactive, it is a good start. I he you get an appt soon and feel better. And awful you don't even feel like wine!

whatkungfuthat sorry got your name wrong my iPad has a mind of its own!

Thanks Pavlov, I did the POAS and as predicted it was negative. I am trying to tell myself that everything I have googled suggests fibroids. Hope your back feels better.

I just cycled to work meeting. First time since surgery Definitely a hooray-type moment..

Did you make it back again BM?

Welcome kungfu :)

How's it going Pavlov?

Thanks GreatBritain. I had a scan and have a massive fibroid that starts really high up. The radiographer couldn't see my ovaries etc. just to check so he is going to do a CT scan in hospital.

Do you know how long the scan will be?

No, he did go to great lengths to try and reassure me it was routine though so fingers crossed.

Cool, I hope you don't have to wait too long, it does sound like you are making some progress with understanding what is going on.