Nothing more than bad bedside manner

Today was a bit of a strange day for me... I had my first appointment with the "new" consultant at the hospital where my haemophilia doctors are based. Needless to say, it was a very poor experience, especially when you compare it with the excellence of the haemophilia centre. Hands down, the haemophilia clinic is probably the best run clinic I've ever been to, with some of the best doctors I've ever seen. And it's all under the NHS, unlike all my other doctors. I was transferred there from the same consultant privately, as the NHS has more extensive services and better back-up for people with bleeding disorders.

The new plastic surgeon, however, was awful. On the outside, he was smiley, friendly and kind, but it soon transpired that this was more than an inaccurate reflection of his personality. I don't think he fully understood the difficulty I am facing with disengaging with my private consultants and moving to the NHS. He didn't appreciate the slowness of the transition, and the fact that I can't just move on with a clean break straight away. Especially now, when there are added complications that must be addressed in good time. It's hard to make such a big change without time.

Whilst I can understand where he's coming from, he told me right at the start that he wasn't going to treat me if I was seeing the other consultant. He wasn't even going to come up with a plan nor tell me what ideas he had, if any. This, I thought, was appalling. How is it so, that he can write me off straight away, without a second thought? Furthermore, the way he treated me was worse. He wanted to see the wound that was left - which was totally fine by me, until he decided to take the scissors and cut right about the wound. I couldn't help but flinch; his response to which was to chastise me that he was just cutting the dressing. When you've got a bone infection and a degrading joint, the slightest touches and movements hurt. I didn't mind the pain, and I didn't recoil, but it was his reaction that disgusted me.

He proceeded to tell me that he was going to apply silver nitrate to the wound. Not something I particularly like, but I kept quiet nonetheless. He left the room, while I gathered my belongings, only to find that he'd gone off in another direction, out of sight, when I came out. I was left standing in the waiting area for a good few minutes. When he eventually found me and took me to be silver nitrate-d, the process hurt me so much that tears just welled up in my eyes. He saw this, and remarked that even his paediatric patients let him do this without it hurting. Now, I know he's been there and seen it all, but it was genuinely painful and I was, again, appalled at his words. However, the worst was yet to come. A nurse came over, and instead of being discreet, he exclaimed to the nurse, "Look, she's upset now!".

I just couldn't believe the whole experience. After that, he took me back to the waiting area and demanded that I "sit there" while he had a look at my MRI. Five minutes later, he asked me in, made a few comments and decided that I wasn't worth seeing again since I hadn't fully cut off connections with the private side.

All in all, I can definitely say I won't be going back. Not because he's not a good clinical scientist. But because his bedside manner and treatment of patients was so very poor that I can't stand being insulted and humiliated like that. Not only did he upset me, but he commented that my vascular surgeon "wouldn't care about my hand, and just the vessels" in an extremely derogatory way. I'm not going to pretend that everything's been plain sailing, but I know for a fact that my vascular surgeon has always had my best interests at heart, despite being a little bit slap-dash at times. This is no way for the new surgeon to behave, not least to belittle my other doctors. He even mentioned that I've been wasting my time over the past few years. Thanks, but no thanks.

One day to go...

I know I haven't written an update in quite some time, but this time tomorrow I'll probably be going down to theatre for my surgery. This will be the last try to obtain skin cover on the tumour defect wound, so that I can begin other sorts of treatments to heal the bone, nerves and the aesthetics (though this is relatively unimportant to me at the moment).

I'm nervous, but I trust that God will look after me, and show my surgeons the light. Pre-operatively, I will get my DDAVP infusion and intra-operatively, two units of blood will be transfused. I have been very anaemic for quite a long time, and I quote that even my haematologist said that I am " very iron deficient". I am due to see him again in a fortnight's time back at the OPD about my platelets and he has already liaised with my surgeon's haematology team (since I'm not having my operation at the same hospital where I see my haematologist).

My surgeon is going to send the anaesthetist up to the ward to set up the lines that I will need. My veins are rather poor and we aren't keen for a nurse to do the job. I've had cannulae in and blood taken from nurses six times this year already and each time has taken them several attempts to get into the veins. Hopefully it won't be too bad tomorrow, I don't know how many lines they will need though, as it seems that I'm having so many things via the IV route. It's probable that I'll just have one, and they'll put a splitter on it (at least this is what I'm hoping for...!).

***

Chinese New Year is on Sunday; I hope I'll be home in time to celebrate the day with my family, not in the hospital. It would be the second New Year running that I'll have spent in the hospital. Last year, I was in day surgery by myself as both my parents were working and it was a school day. This year will be the same, but I'll be admitted as an inpatient, but I have my best friends coming to visit me tomorrow evening. I hope I can be well enough to see them.

I don't have a lot more to say for the moment, apart from I wanted to thank all my friends who have supported me throughout these four years. I have grown so much, physically and emotionally and I wouldn't be the same person, had these events not taken place. I'll try to post another update at some stage, but for now - all I know is that I'm in good hands.

Big(ish) update!

I got into medical school, as of Thursday! I am SO excited to begin the journey that should take me to a doctor! Though I've decided that maybe I'd prefer to do medical law, but we'll have to see when the time comes since it'll be in five years time at least.

For my "good results", my father has just bought me a MacBook Air! I'm so so happy with it but I still feel like it's much more than I deserve. I will also be getting a new pair of Uggs and Converses in the near future so I am really excited for that too.

On another note, I was at the hospital on Friday and had a chance encounter with a violent and aggressive patient who was aggravated over the lack of receptionist at the desk when he arrived in the department. Even my surgeon was vexed by the man's behaviour which is unusual since my surgeon seems to have the patience of a saint! I am being admitted next week for some surgical procedure or other and will have to call his secretary tomorrow to find out details and ask where I need to go since my surgeon runs theatre lists both in Harley Street as well as Greater London.

I have had some terrible bleeding lately which is the main reason why I haven't been updating as regularly as I want to be. I am getting some bloods done too next week, as I can't get in to my GP for the next three weeks so we will pay privately to have them done when I am admitted next week. I also realised a few days ago that someone has been giving my insurance policy number to their hospital for treatment as I am receiving phantom bills from hospitals and consultants unknown to me... Once again, I have a case on my hands that has come about through no fault of my own and needs sorting. Similarly, but thankfully, my issue with the other private clinic I attended has been sorted. They decided to freeze my account to investigate matters and then adjusted my payments and informed me that things had been wrongly billed. This is still no excuse for their pathetic letter, waffling through reasons why they billed me for wrong things, despite having been told by the nurse himself that I was wrongly billed for monetary reasons!

I have already met a couple of people going to the same medical school as me and I am so excited to attend some of the Freshers' events with them. I'm glad that I have met people beforehand as I would otherwise be more apprehensive than I already am to go to uni!

Anyway sorry for the super long post but I haven't updated in a long time and thought I should! I hope you've all had a gorgeous weekend, just like I have. Lots and lots of love to you all :)

Appointment thoughts

Back from the hospital and it didn't go as I'd hoped. My surgeon said that there may still be bits of AVM in my finger but that they're not significant enough to warrant any (more) treatment of any kind. The overgranulation has gotten worse (after an improvement last week) and so we're back to square zero again, so it seems - not even square one, because it's worse than that. Today he said to me that we'd taken "one step forward and two steps back" which is a real shame. He wants the next appointment to be in mid-August (three weeks today) but remember when he said that was when I'd have surgery?

So, I'm a worried JJ about university and about things. I've worked so hard to get the wound in a healthy state and suddenly we're here, and it's worse than before. This obviously means that surgery will be delayed but I want to write to my surgeon tomorrow and ask him a few questions. I don't understand why the granulation tissue can't be removed surgically and then for the new graft to be placed on top. At the moment, it's just hard for things to sink in - on top of that, I've had the sick bug pretty much all week! I'm feeling a bit better today though which is great, but I wish I had two pieces of good news to share!

I was at the hospital from 2pm till 5.30pm again today - most of the time was spent waiting for my surgeon to make his way through the Olympic-caused traffic in the city centre! He arrived at about 3.30pm and I saw him, had my dressings done, and then saw him again. I've been prescribed a new anaesthetic drug which I hope will be helpful at relieving the physical pain of my ulcerated goodness-knows-what (since it's not really AVM)!

I was watching the Olympic opening ceremony earlier, and although Daniel Craig's appearance is rather cheesy (among many other acts of cheesiness), I can't tell if I'm annoyed or shocked at Great Ormond Street's appearance. I would have thought that the hospital has enough recognition, both on a national and international scale, that this wondrous opportunity would be given to a lower-profiled charity. Don't get me wrong, because I know GOSH does some great stuff, but it just goes to show how many people are just swept under the rug that is the NHS. Sometimes, I overanalyse things, but if I were ten years older or younger than I am now, maybe I would get the treatment and help I need for a better quality of life. If I were little, people would see the injustice of a "suffering child" and as an adult, people would be more fearing and more willing to act - if I had a (respectable) job and family of my own, who knows where I'd be now.

Maybe this is self-pity, and if so, I apologise because it wasn't the intention. Once again, the cliché proves true: money cannot buy happiness, health and love.