Where do I start?
I've had quite a time of it over the past fortnight.
We managed to get a week away, all of us without incident. I had to remember to pack all my medical things (all new to me) but we made it. We stayed in a little lodge in Northumberland and just relaxed, did a little sightseeing and laid in most days.
The children played outside in the big courtyard, it was nice just sitting watching them play on their scooters. Carefree.
Some good friends visited the region once we were home, they have twin boys the same age so it was lovely for the boys to all play together and for us adults to talk and while the time away. We also managed a lovely ride on a heritage railway together which the children thoroughly enjoyed with tea and cake afterwards.
By this point though I was starting to feel rough, I knew I wasn't right my temperature was spiking and I was feeling quite unwell.
I was due to visit London for my latest immunotherapy infusion so was determined to travel, I was prescribed some antibiotics for the infection and all was felt to be ok to travel.
My dad came with me this time and we caught the train down and went to the hospital for my routine pre-treatment bloods and to see the doctor.
We then went to the hotel and settled in for the night, however, I felt unwell before I went to sleep and woke up in the early hours with a temperature of almost 39. At this point I was really feeling quite poorly so it was unfortunately a situation where we called an ambulance.
The ambulance arrived and assessed me, my temp was still up despite paracetamol and my blood pressure was very low which worried the paramedic team. I was blue lighted with my dad up to the nearest A&E where I remember (at this point I think I was going in and out of consciousness) being rushed into Resuscitation which I knew didn't bode well.
My really low blood pressure was worrying the doctors intensely and my dad was informed I was very sick indeed with sepsis.
At some point over the next few hours I was transferred to intensive care where I was stabilised and given some medication to help raise my blood pressure, oxygen to improve my saturation and fluids to try to protect my kidneys. As I understand it they were in a very poor way.
Over the next few days I remember small periods of lucidity, I knew my dad was with me (for which I was eternally grateful), I got to know some of my nurses (one on one nursing) and listened to some of the Doctors. But other times I was entirely somewhere else and was informed this was normal and was down to the infection.
I lost my temper one day after being laid staring at a door for probably three days at that point? They moved my bed over to the window and I remember the relief I felt at seeing real people walking around below. I had some awful nightmares during this period also and never wish to repeat them ever again, I have never been so grateful to wake up. Truly.
The temperatures that I kept spiking were awful, I was sweating so much, I had raging headaches, stiff neck and could just never seem to feel cool.
I was nursed carefully and thoughtfully through this awful infection and I am forever grateful that they saved my life. I had been informed that it had been a close run thing and had we left it any longer to call an ambulance it may have been a different story.
During my time in intensive care I had some lovely visitors, some mum friends that I only knew from an online group took time out to come and visit me. An old friend came to see me and my mum and almost step sister also visited. All of these visits meant the world to me. My dad was a constant, there each day for hours on end, watching me sleep or talking to me. Team Verrico made this possible and both my dad and I were so grateful for their help. I was so scared. I was scared to sleep. Scared I was dying and having someone with me from home saved me from going totally under, mentally.
They eventually transferred me out of the Intensive care unit though once my bloods had improved enough to suggest I might have beaten the infection. This is when things started to go wrong.
I was moved to an older building at another site and into a small side ward where I was with one other person. The room was very small and the ceiling very low. By this point my dad had had to return home and I was on my own. My claustrophobia was also really affecting me and stopping me from relaxing or concentrating on trying to get better (I hadn't eaten in a week and had no appetite).
Luckily the lady I was sharing with was a truly lovely person. She had had surgery in the pelvis and was recovering, unfortunately she suddenly began bleeding out and was rushed back into surgery. I was so worried for her and her family they had been through so much, having recently lost their teenage daughter. Despite this and her medical issues when I broke down with home sickness she got out of bed to hug me and console me. She genuinely cared for me and how I felt and I felt so selfish that I was being so self orientated when others were dealing with so much more.
Again some lovely people came to see me to try to raise my spirits and it was good to see them but still I was very upset and beginning to feel unwell again. I had not seen a Doctor in all the time I was at this hospital and nobody had taken my bloods nor were they attempting to restore my pain relief to pre-sepsis levels (it had all been dramatically reduced to protect my kidneys).
I am afraid that I self discharged this week after trying desperately to get transferred back to my home hospital. Mr H and I determined that in order to recover I needed to get home. But that in itself was a real challenge, we needed childcare and Mr H who had himself been through a mental nightmare over the past week not knowing if I was going to make and not being able to come to be with me had to arrange to get down to me. In the end it was decided that he would come down on the train and we would hire a car to get home. This in practice was not so easy and Mr H struggled with his anxieties while we tried to get taxis and find the hire car that we had booked at the rail station. All we then needed was for him to drive for roughly four hours to get home with a sick person on board who could at any point be taken even sicker and need a hospital. We did make it and I am currently resting at home with my family around me and I do feel better for it but still not 100%.
I've have now also seen my own GP, had my bloods taken and we are now waiting to find out if I need to be readmitted for continuing treatment.
It has been a scary, harrowing time for me the past fortnight and I am so afraid that I will have to go through this again. Essentially I am now at high risk of constant reinfection due to the fistula which they can't fix for fear of making things worse. The infection is starting to evolve to be resistant to the antibiotics available to me and ultimately it is likely that this will be the thing that will take me. I know I have had far more time than most from diagnosis but I want more.
I want more time to see my little ones grow up, I want more time to spend with the man I love. I want to spend time as a family doing things families do, going for days out, being together and loving each other.
Very selfish of me but there we have it. I know that this cannot happen though and I know I will never accept that my days are numbered.
