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Tuesday 14 May 2013

Pheochromocytoma and Kidney Tumor Post Op Blog

Well I've done it again and not blogged for ages, mainly because I have just felt too ill to be able to sit at the computer to try and put how I am feeling into words and explain everything that is going on, its been an awful few months since I last blogged but there is finally light at the end of that very long tunnel.

After 2 postponements for surgery, I finally went into The Churchill at Oxford on the 9th April and had surgery on 12th April.  I saw both Mr Sullivan, renal surgeon and Mr Mihai, adrenal surgeon during the 3 days I was admitted before surgery and they explained what would happen, as I was having a double operation they could not be able to do this keyhole but it would be open surgery and just be a small wound on my left side, more about this wound later! I woke up on the morning of surgery very apprehensive, I was last on the surgical list due to my operation being very tricky and as it got nearer to the time I was due to go down the more I felt that I could not go through with it.  I was alone and very scared, I just needed someone there to sit with me and hold my hand to let me know it was all going to be ok......

They wheeled me into the anesthetic room, one of my favourite nurses from the ward, Alice, came down with me which was just aswell as no one could tell me if I should keep my knickers or not so I kept them on, well they had to come off and I also had to take my belly bar out, not very easy when laying flat, they asked if I wanted to sit up to be able to take it out but I told them that if I did that then my belly button would disappear!  They then started getting busy but I had to go through my ID with them first and I couldn't speak as I was choking back the tears, Alice told them I was very scared, they all reassured me and helped me have the courage to continue.

The anesthetist explained that I would have an epidural but in order for them to put that in, they would have to send me off to sleep and then wake me up again to make sure its in place.  Last thing I remember is turning onto my side so they could start, I woke up with an oxygen mask on and a very nice male nurse at my side telling me well done and it was all over, I was very confused and thought he meant the epidural was in but he actually meant the whole operation was done.  The more conscious I became it was apparent some things were not right, I could not feel my legs and I could not move both of them, the left leg was worse than the right one, I already have nerve damage in my right thigh so that wasn't too much of a surprise, then all of a sudden it felt like someone had stabbed me in my left shoulder, I have never felt pain like it, well not at this stage anyway.

They took my arm and started moving it around, I was crying in pain but it eventually wore off and I was extremely grateful, they said this was because my arm had been secured above my head for the duration of the operation, approx 6hrs.  I still had the problem with my legs, it later appeared that the epidural was the problem so they did not seem too concerned.  I was told the operation went really well and that instead of taking the 2 tumors from my kidney they removed 7, I was in even more shock!  I had been in theatre and then recovery for 10 hours, it had felt like minutes for me!  The nurses greeted me back on the ward and got me comfy, they did something called a block test, which is basically putting ice cubes on different parts of my body so see if I could feel anything, my left leg had no feeling still and my left side and my tummy.  They then told me they had to remove the dressing as the air needed to get to my wound, what they uncovered completely horrified me and I was scared to move as I had been glued back together!  They left me armed with my morphine and nurse button.

After a sleepless night of being woken for obs and doing the block test they told me  then I had to get out of bed, I thought they were joking and was petrified the glue was going to come undone that was holding me together and also I could not stand up as my left leg still had no feeling so I couldn't put any weight on it, we also had to negotiate the drain that was in my left side and the catheter.  I felt awful and regretted having the operation so much, was the pain really worth it and now I was faced with a lengthy recovery and know that one day I will have the same double operation again but on my right side as I have a mass on my right adrenal and kidney.

I had things coming out of me everywhere, I had a central line in which was quite handy as there were 3 attachments that could be connected to it, made things alot easier for the nurses.  Physio came to see me once the epidural was lowered and my morphine increased as this gave me back the feeling in my left leg, it was time to get me walking about which was sheer hell and I also had a few things still attached to me so that made it more difficult.

A week after the operation there was talk of me going home, I was shocked as I did not feel ready, I could not even get in and out of bed without using the bed control that would sit me up, I would not have this at home so how would I cope?  They took the drain, catheter and central line out all in preparation of me going, I was also still on oxygen, so again I was surprised they thought I was ready.  On Saturday I had a lovely new nurse I had not seen before look after me, she contacted Mr Mihai as she was worried about my breathing and I was sent for a chest x-ray which showed some fluid had built up around my left lung.  I was told coughing, walking and taking deep breathes would clear it, I was also put on very strong anti-biotics.  Coughing and taking deep breathes is virtually impossible when you have practically been cut in half, luckily I had made friends with a lovely lady on the ward and so we would go for walks together, when she had visitors I would go on my own, I would walk a bit out of the ward and did not realise one of the consultants had seen me until they mentioned how pleased they were with how hard I was trying to get back on my feet.

On Tuesday 23rd April I was discharged from hospital and left the ward staff a lovely box of chocolates as a thank you for all they had done for me.  Hilda gave me one last shower before I went, she was also a great help in my recovery and gave me my first shower after my operation, which I believe was the turning point for me getting my confidence back and make me realise that I could get over this.  My wonderful friend Sammii came to pick me up, Sammii had also bought me in, Lorna had been house-sitting and looking after the cats for me and my amazing friend Beki came and stayed with me for nearly two weeks once I was back at home to care for me, they all did an amazing job and I will be forever be grateful for all they have done for me and still are. 

I'm slowly getting better but keep over doing things as I feel ok and keep going then bang, I'm in agony and also for the next day afterwards.  I still cant feel my tummy but that's probably a good thing as it means my wound does not hurt, I am due to have another chest x-ray in a couple of weeks to make sure all the fluid has gone from around my left lung.  Below is a picture of my war wound 18 days after surgery



I would like to thank everyone for all your support and well wishes before and after surgery, thank you Donna for my lovely flowers, Twinny and Sissy for my card and bear and Lorna and Beki for my card and guardian angel pin.

Shellie B

8 comments:

  1. Hi shellie, Bless you, you are a wonderful person and from what ive seen are probably one of the strongest people ive ever met, keep it up <3. You are truly inspirational,xx

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    1. Beauty and you by kelly,xxx

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    2. Oh dear my eyes are leaking, thank you for such lovely and kind words x

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  2. Whooooo ...wow !! You truly are a remarkable person! Great blog, and lets have more as no one has gone through so much and many can gain strength, courage and understanding from your story.
    If you can overcome all that you have gone through...... you can achieve anything you want lady. I bet your mum is smiling down on you so so very proud x

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    1. Thank you Darren,you also have made my eyes leaky. I don't think it's sunk in yet what I have been though but again such lovely kind words about my experience. I hope I can inspire other people to keep seeking answers when you know that something is wrong inside your body as eventually you get results x

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  3. Your so very brave Twinny I Think the world of you sweetheart . Love you to bits xxx

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    1. Thank you Twinny, I couldn't have got this far without the years of support you have given me, love you sweetheart xxx

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