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37. Bang, bang, bang my head..gently on my keyboard

Posted Oct 04 2009 12:25am
Sometimes..just sometimes you have to wonder if you are actually meant to be here. I do, but just sometimes. It seems that everything I do at the moment conspires against me, in every way. I won't go into huge detail but the job centre are appallingly inefficient, unhelpful and rude. I know they are all under pressure with the amount of people now being out of work but honestly, they all have jobs and its also MY problem. I am currently trying to apply for a job set up just for me and they don't seem to want to let me become employed again! Joy!!

Another minor setback - Uni want to meet with me as they didn't get my qualification information on my application - even though we quadruple checked it before it went out to them. More joy! So I still don't now if I have a place or not.

And finally, to top the last week off I went to meet with my breast surgeon today to after being re-referred back into the system in order to plan my surgery within their 13 week deadlines.

I get there, pay £2.30 for parking and find out as I am checking in that the woman behind me is also seeing my Breast Surgeon at the ame time as me. I checked with her in the waiting room and she was confused too. It turns out that the surgeon isn't even in the hospital and won't be seeing either of us. He had a teaching day booked but no-one thought to tell us. So I was led into see another breast specialist and told to strip down to the waist..then my notes came out, then told that I didn't need to be examined at all and to pop my clothes back on again. Apparently no-one really knew why I was there, other than to make a firm appointment for my breast reconstuction surgery and there was no-one to talk to me about it. I tried not to feel disgusted but I was, I felt let down. I complained that I had driven into the city, paid to park and I wasn't leaving until I had spoken to someone about my operation, physical expectations and my after care plan. They left me sat in the room for 15 minutes alone waiting for them to make something happen.

On exiting the room the other surgeon asked me who my breast care nurse was.."You haven't assigned me one". The surgeon frowned worriedly and shared an "oh my god" moment with the two nurses waiting on his next move and flustered about in various directions trying to get someone to speak to me immediately.

So, I sat in the waiting room again..and waited. Thankfully a lovely nurse (now my breast care nurse) came out and took me into a side room and we briefly discussed how long I would be out of action with a kettle, a shopping trolley, a hoover and a car - likely 1 month no heavy lifting objects or objects above the waist and 2 months for normal daily tasks like kettle, hoovering etc but that was a minimum only. I didn't know this but they are going to take the whole of my latimus dorsi back muscles out..OMG! She told me to prepare myself for that and that physio might be needed, especially if I want to paddle my kayak again. She did say a lady they treated now rides horses again but does feel weaker than she used to.

I realised as we talked that I had so many questions and although I have had a disjointed and rather bumpy journey towards my breast reconstruction surgery so far, a lot of which I have had to push for myself, I am still grateful that I am able to do something about my BRCA1 situation. If you are following my blog and wondering about your own family history, my journey is not the norm, most people are steered through the shortcut route whilst I, like the very day I was born feet first with my umbilical cord wrapped around my neck, chose to go the difficult route. Do not be put off by my journey - just let my discoveries help you think about things you may not have thought about already.

So, to list some things for recollection on Wednesday (when I finally do get to meet my breast surgeon again). This is useful for me and anyone else waiting for their surgery too - I guess there are so many things that you do not think about and wish you had.

Q. Will I get to discuss what is going to happen to me when I get to hospital, my operation and stay in hospital?

Q. Will I have drains in my body after the operation?

Q. Will I need to sleep upright at home?

Q. What will I be able to do and not do and for how long?

Q. When will I be able to live normally again, without fear of tearing scars?

Q. How long will I have to take painkillers?

Q. When will I be able to drive again?

Q. Do I have to have someone empty my drains at home? Will that be my chosen carer (Chris) or visit my GP or what?

Q. What will I need to sleep in whilst in hospital? Especially having scars front and back at the same time - how will they clean my wounds?

Q. How long will I have a catheter after the op?

Q. Will the painkillers give me constipation as they are likely to be opiate based?

Q. If so, can I take other things to counterbalance the effects as exercise will be zilch and drugs will be daily?

Q. When will I be able to wear a bra again?

Q. Will I get an MRI scan before or after my operation?

Q. Will I be in an intensive care unit initially and for how long?

Q. Does the surgeon have a lunch break during my 8 hour operation?

Q. When does he go for a pee?

Q. When do the nurses go for lunch and a pee?

Q. Who will be keeping an eye on me whilst I am under anaesthetic and everyone is eating lunch?

Q. What support is there after my surgery for psychological support, if necessary?

So..that's all for now..I think I might just give them this list to answer. I need to know all these things, is that normal? I dunno.. I am giving my life to them, to the surgical team..and I need to know these things for me. Giving your car to the garage for an MOT, you don't question, but this is my body and my life.

My life..
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