So this is me again, back to the hospital with a temperature of 40.1C feeling really rough and on oxygen. Here is the full story of what happened the night I went back to A&E again..
Its the beginning of the June and I was back to the A&E again. I was not feeling great and my temperature was very high 39.5C. I had to go thru the same procedure as before , more blood tests, more blood cultures, observations, chest x ray again.... at which point I was shouting at doc really angrily to stop doing X-rays on me as I knew they re not gonna find anything (first time I shouted at someone). I had X-rays done so many times by now, in fact each time I came to A&E, where by the way they know me by now as a patient with mysterious fever. Even doctors in the corridors recognised me and were saying hi to me with a certain sympathy and sadness in their voice.
However Ive been told its a hospital policy to have X-rays done and they had to follow the guidelines. I know I had an option to refuse but being a good patient I had it done anyway and yet again nothing was found.
In A&E I was shivering uncontrollably, my jaws movements were involuntary and rather fast and aggressive that at one point I thought what if my teeth go ! Thats the last thing I need, fracture of my premolars/molars ! I was shivering so bad that mum put a blanket on me and held me tight for some time to try and ease my discomfort.
Not long after I was given IV antibiotics / paracetamols I was transferred by an ambulance to "my hospital". I was given a lovely specious room with my own toilet which was absolutely fantastic.
I desperately needed a loo. Thats when I had a shock horror ! My underwear, my jeans were full of blood ! I only had my period about 2 weeks ago and this didn't look like my monthly period. It was a horrendous, undignified and embarrassing bleed. My nurse kindly got me some funny disposable hospital underwear along with a hospital nightwear. It was nearly midnight and my parents managed to go to my flat, get me some of my stuff and come back to the hospital despite of the visiting hours being over. As soon as they came back I began shivering uncontrollably again. Nurse took my temp and it was 40.1C. At this point my mum said I started hallucinating and mentioning fish to her but she couldn't understand what I was talking about as I didn't make any sense. So I was given more meds and finally fell asleep.
Next morning they transferred me to oncology where I have seen some more familiar faces, from nurses to my doctors.
I felt really rough in the next few days. I couldn't eat anything. I d wake up in the morning with my PJ and bed covered in sweat, you can almost drain it. Id quickly run to the shower with all my fluid / antibiotic and anti inflammatories attached thru iv line to me and only to come back into newly changed bed to sleep again.
I had a lot of tests done incl MRI scan which is a very noisy scan ! I felt so rough that I slept thru my scan. Nurses had to wake me up when it was all finished with a big smile on their face . I was sleeping loads and not eating.
It was decided that I should have my picc line back again as they could not find a veins on me any more and were considering stubbing me in my leg.
However, me being me ( noting is ever straight forward with me !) when picc line was inserted instead of going close to my heart it has gone thru to the other side of my chest ! I am truly weird. Even the nurse said she had never seen that on X-ray ! so I was back for adjustment of the picc line and as usual fell asleep at the procedure ! At this point all the nurses were laughing in my oncology ward ! I kept on falling asleep thru everything ! so we all giggled a little on my account :-)
At least I have my picc line back ! So no more needles and stubbing and all the blood tests / iv drugs etc were all done thru my little line in my arm and its all finally pain free !
I ve seen so many docs at this point from oncology to microbiology, bone people, nutritionist etc etc
Finally a big mystery had been uncovered after the number of scans.....It was my gall bladder that got infected and thats the culprit of all my fevers ! So I was on iv antibiotics and still feeling sleepy, tired and not eating apart from taking fortisip ( nutritional shake the only thing that kept me alive !). As a days went by I could hardly get myself to the shower / toilet each day. Thats when the ward received a phone call from haematology that my haemoglobin was really low 6.3 and normal range is from 12 -16 I think !
My doctors were surprised I could even walk ! So I had 3 bag of blood transfusion ( pain free thru my picc line :-).
My bloods results
So eventually I started improving slowly each day. I even managed to eat some food too ! and was more awake. I found comfort in reading a book my friend Silvi suggested. It by OSHO - The art of living and dying.
When I started feeling better the whole situation started to sink in slowly. One night I found myself crying so much. I needed a release from all this tension, endless hospital visits, my deteriorating situation, my poor parents etc etc. I ve cried so much, I wanted to scream but I couldn't do that so instead I silently cried at my very bleak situation. This is when I realised I only had one tissue left ! I than laughed a little and thought to myself "I ll have to limit my crying due to the lack of tissues "!
So I fell asleep ...
The next day around lunch time I was in a little bit of pain and needed oramorph top up. As I was the first bed in a very long ward I could see nurses going passed in front of me with a trays of food.
At that very same time my nurse was taking a bloods from my line so I said to her " With all those nurses going pass me with food trays I felt like I was a judge at the Miss World competition "!
She looked at me and smiled. We giggle at the fact that it might have been my morphine kicking in but she did find it funny that I managed to entertain myself with a good imagination on the oncology ward.
My good old friend Tesni came to visit when I started feeling better and I appreciated her company.
She was naughty and brought me McDonalds meal I was craving for and gave me a toy from her happy meal ! It was naughty but so tasty ! Thank you Tesni :-)
After cheering me up a little and feeding me with tasty meal (compared to my hospital food ) Tesni left.
I felt guilty because of my recent enjoyable, delicious and mouthwatering junk food meal that I had so i had to compensate it with a few healthy treats
Few days later my good old friends came to visit from Oxford. Rachel, Kerry and Adi (who gives the best hugs in the world !)
It was so lovely to see them and they cheered me up a little. We talked about our good old times, laughed about dental mishaps we all had and how Adi and I played cover orange game in between patients. That little game was almost our ritual we had to do in between the patients !
Ive laughed so much that even my nurses noticed I looked a lot happier and better. It was such a great way to spend my hospital afternoon. Even though I don't like people visiting me in the hospital I really appreciated that fun afternoon I had with them.
Than as a surprise visit my friend Omar came down to see me with his sister after his trip to USA. It was so great to see my good old friend. I finally had a bit of the chance to talk to his sister about little things that made us all laugh :-)
My last hospital visit was from Irene our neighbour that I ve not seen for a while. She was a lawyer who gave it all up and became a healer. Great and very kind person that I'm so glad I had a chance to meet and become a good friends with.
My lovely docs Jason, Jackie and consultant were really happy with the way I was improving slowly. Jason and Jackie have been absloutely fantastic during my 10 days stay in the hospital. They ve organised everything so quickly for me that I don't think I would have had any better care if I was a private patient in super swanky hospital. I ll be ever so grateful to them both.
My nurses were also all very kind and chatty with me that I appreciated a little distraction from my grim hospital life.
So finally I was discharged after 10 days. It was so great being out, even though my energy levels were not that great. Its like I went to to hospital in the winter and came out in the summer. It was so nice, warm and sunny. I enjoyed a short ride in the car, in the sunshine and watching the world go by.
Next day I even managed to go to my favourite place to eat as well and enjoyed my flowery tea and the evening sunshine.
I guess sometimes a will to enjoy life despite of feeling rough is much stronger. Also I think my life will be a very short one so I often force myself to do small things that make me happy on a day thinking I ll be paying a price later on but its worth it for now !
I was absolutely knackered when I returned home
I was happy to be home, have my home comforts and my own toilet ! But somehow sadness would often creep in and spoil my happy days.
I often would look at my poor parents and how they are soldering through, loosing and forgetting themselves in all of this and putting me first. My mum looked drained and very tired but was still looking after me at this bad time.
All this would often make me feel so sad but i d try not to cry in front of her. Even when i did feel tearful i d run to the loo so she would not notice. I hope she ll cope after I'm gone, i d often think that.
However, for now I will try and enjoy every moment with them ..
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