Janemcs
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Coping with serious illness and fear

Janemcs
Posted by
08 Feb 2017

11 months after my stem cell transplant I got seriously ill and ended up back in hospital. For the first time since my diagnosis I was really scared I might not get better. How do you cope with that?

Seven weeks ago, on 30th December I was admitted to hospital with a high temperature. I'd spiked a temperature for the first time since coming home after my transplant almost 11 months earlier.

I'd had a cough and cold for a few weeks which just didn't seem to be getting better, and the day before going into hospital I was just feeling totally rubbish. Once I got admitted to hospital I deteriorated very rapidly. My temperature remained high, I couldn't eat, I couldn't breath and I kept vomiting. I was immediately put on IV antibiotics but, for the first time, they didn't seem to be helping. Three days later and I was getting worse rather than better. I was also getting scared. My doctors hadn't managed to pinpoint what was wrong with me, but they'd ruled out a bacterial infection and were suggesting that it might be viral pneumonia. That's when I got really scared. I'd heard of so many patients with AML falling victim to pneumonia. I was really worried that having gone through all that gruelling chemotherapy and the trauma of a stem cell transplant that my immune system would fail me and the pneumonia would get me. It was the first time since my diagnosis in December 2014 that I really and truly thought that I might die.

That's a pretty hard thing to type. 

I'm very lucky that I have wonderful family and friends around me to call on, and in the middle of the night I was able to call on an amazing aunt. Bizarrely at 2am she happened to be awake and online and was able to offer some words of comfort and reassurance, and also and oddly some random photos of animals which did strangely help. 

The next day I on my aunt's advice I spoke to my consultant who reassured me that I didn't have pneumonia and that although I was pretty desperately ill I would get better. Of course he was right and within a couple of days I had stabilised and was starting to recover. 

What have I learnt from this experience? What words of advice can I offer others?

1) Friends and family are amazing. You're going to need them

2) Talk to people when you have worries. Just talking to my aunt that night helped me to feel better and after chatting to her I had formulated a plan to help me cope.

3) I was too scared to talk to my husband and those closest to me about my fears. I wasn't sure any of us could deal with the emotional overload that such a conversation would cause. My aunt, although family, was slightly removed from the situation and therefore able to offer more constructive support and advice.

4) I did survive. My fears were unfounded and I'm getting stronger every day

5) I'm very grateful I'm alive

Comments

09.02.2017

Hi Jane, thank you so much for sharing this blog, which I can imagine must have been very difficult to write. I can only imagine how frightening this must have been for you after all that you've been through. It is so good to hear that you have such supportive friends and family around you, and that you are getting stronger every day. Thank you so much for sharing your words of advice with others - I wish you all the very best, Alice