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Friday, 9 September 2011

Disappointing Day

Today I had an appointment with a new neurosurgeon in my usual neurology department, at the hospital that I am unfortunately becomming quite a regular at.
This appointment was made for me by my neurologist, in the hope that this surgeon may be able to offer a suggestion as to the next path of action for managing my condition.
Today’s appointment was short. I am extremely reluctant to have further surgery at present and as the neurosurgeon is only able to offer surgery as a treatment- the consultation was a naturally a brief and pretty pointless one.
Despondent and extremely disappointment, I wheeled myself into the neurology outpatients waiting room, as the sting of salty tears welled up to the point of bursting point behind my eyes, the pressure mounting and mounting until the first trickle of warm liquid escaped and tickled my face. I wiped the tears away discretely as I wondered just where this intense emotion had emerged from?
Deep down, I should have known that this wouldn’t have been the most fruitful of consultations: yet despite my vast experience of being poorly and hospital dependant, I still naively trusted in 'the system', that all I needed to do was sit back and ride the ‘treatment train’ and rely on the fact that everybody caring for me would always know my full case history and that each appointment would be with someone who is fully informed of my complicated condition.
I am most certainly not proportioning blame or critism tonight, I only mean to highlight the fact that perhaps we as patients have to keep abreast of all of the treatment areas pertaining to our own conditions; as unfortunately our predominantly wonderful NHS staff are so overstretched that they often get such little time for consultations. Our GPs have to work such long hours and have so many patients to contend with, that we can hardly expect them to know every patient’s case inside out and back to front and not forget a single detail, particularly when they are as complex and comlicated as mine!
Today’s consultant was great and very helpful indeed and I feel it important to stress that I thankfully simply can not fault my GP either. My problem is not the people who are treating me, but the fact that I have so many people treating me.
Spinal Surgeons, Neuro Surgeons, Orthopaedic Consultants, Physiotherapists, Hydro therapists, Occupational Therapists, GPs, Pain Consultants, Pain Psychologists, Mental Health Teams, Urology Consultants, and Neuro Urologists; I’ve had varying combinations of all of the above treating me throughout the last five years. That is an awful lot of areas for one consultant to be fully briefed in, so I appreciate why so often they are not and how crucial areas of my condition are sometimes overlooked.
Fighting back the tears as Garry and I meandered our way through the maze of corridors back to the hospital exit, I felt a hundred eyes upon me as there was no stopping the tears from rolling down my cheeks by this time.
Wonderfully supportive as ever, my wonderful husband clutched my hand tightly all the way back to our van where he then held me close and stroked my hair and made me feel safe and secure and that there was nobody else in the world but us.
Why was I so upset? I have certainly had worse news than- ‘unless you want further surgery, I am yet another consultant who is unable to help you’, that’s for sure!
I believe that the thing that upset me today was that I had let my guard down and let myself have hope and complete faith in the fact that the consultant that another consultant has said would be able to help me, would be able to do just that. He couldn’t and my faith was unfounded.
I feel that today the emotion leak happened, as lately I have been feeling quite insecure about so many areas of my life. For starters, with a foreign holiday fast approaching, I am extremely upset about not being able to do anything about my weight, (which is a huge three to four dress sizes bigger than my slim Virgin Atlantic 'Trolley Dolly' days of size 6- 8!
My medication which they simply can not reduce or find an alternative for at present, makes me put on weight, as well as making it really hard to lose weight. I also obviously posess a body which is completely incapable of exercising, so dropping any pounds is consequently nigh on impossible and insanely frustratingly!
I have also recently been feeling immense frustrations that even though I am enjoying writing and establishing my charity- I still have to rely on my husband for financial means.
When I add all of these things together, (along with many others factors that would take the whole night to cover fully!), I realise that I have such very little control over my own life!
This point was only emphasised today, by this consultation demonstrating that I crucially have lack of control over my treatment also!
Today I was told that it was really quite ridiculous to be under another spinal surgeon here in London, when the surgeon who performed my operation, (although in a different NHS trust), would clearly know what is going on inside me much better than anyone else.
I REALLY appreciated today’s consultant’s frank and honest appraisal of the situation, however I couldn’t help expressing to the poor guy, ( who was the first person in ages to listen bless him!), that this is something that I felt was logical and sensible a year ago- only to be told that this was not the case and that I should trust in them!
A year trusting them and not my instincts and experience has cost me a year of my life- a year which is a pretty significant loss in time, when at 28, we still have many hoops to jump through and consultants to see, before we can even begin to find out whether physically having children is even an option for us with my condition. I panic that with that, time is not on my side.
I’m cross, upset and disappointed in myself that I didn’t have the faith in myself, to speak up and not follow blindly as consultant after consultant would contradict one another and still I would not vocalise the contradictions that they were making with one another.
If I have come away from today with anything, it is that we certainly should have more faith in that which we have learnt along our difficult paths and to not always blindly follow the sentiments of people who may have medical knowledge and training, but unfortunately do not have the time to know you and your extensive history inside out as well as you- we are our own experts!
This is obviously not to say that we know best and that we should ignore the advice of the real experts; but it is to say that maybe we are unfortunately the only ones who have all of the bits of the puzzle of our treatment and we should not be afraid to voice concerns or opinions that we may have.
I’m afraid to say that in chatting to others, it seems that there is a strong consensus that many of us feel intimidated by consultants, registrars etc. not to do just that and speak up- but this is a whole other post entirely!
Well, that’s what I’ve learned from today. I hope that your day has been a good one.
After an emotionally draining time, the thing that has made me smile today is simply sitting snuggling in front of the tele with my boys!
When the chips our down, my husband and Barley dog are ALWAYS there for me and words just can not express how grateful I am for these blessings!
I pray that you have as strong a support system as I.
If I am well enough in the morning, ‘my support system and I’, are off to support our friend in a charity event that he is hosting and I don’t believe that I will have any internet access.
In case that this is so; I wish you a wonderful weekend.
Goodnight everyone.


  1. Grief, what a horrible day. It almost feels like you need a doctor who is 'on your side' like having your own lawyer or something, although I'm sure none of the medical professionals have been 'against you'. I do wonder though, whether this demonstrates a sin of omission rather than commission ie.they may not be trying to waste your time, but without paying sufficient attention and listening, the result is much the same. The pity of it is, you're the one who takes the consequences, but thank goodness for all of those you have around you.

  2. It's not much but it's all i have:

    I love you x

  3. I can not stress enough how much I can relate to everything you have written here. I have a very loving husband, whos also very supportive and the only means of our income. I've had so many hospital appointments, with some of the same you metion...and each time all they can tell me is whats wrong with me, that theres nothing they can do and its all a case of pain management. I would not be able to tell you how many times I have cried the same tears. I also have days of utter fear, when I realise that this is going to be the rest of my life! What kind of pain am I going to be in when I'm old? It terrifies me. I have only just discovered you r blog today, through the Sun newspaper article. But I cant wait to read more and hopefully get some real support.xxxx