Hello dear readers,
I guess it's time I updated you. We've been busy but not in a good way. I stayed in the hospice for 6 weeks in the end. Warning: It's a long one......
Whilst I was there I was eating my breakfast one morning when I suddenly felt very wet. I am incontinent so I thought I'd just check all was ok. I was very much not ok, the wetness was blood and lots of it. I just panicked. It was pouring out, I pulled the emergency cord and then thoughts of dying rushed through my brain as the blood just kept coming. The hospice staff arrived quickly and promptly got into action, they gave me a drug to calm me down and another that can slow or even stem bleeding. I was really in and out of focus and scared that this was it this was the end. I must have passed out because the next thing I remembered was being in A & E and suddenly Mr H was there as well as one of the hospice nurses.
They got the bleeding stopped and then took me for a scan to see if they could see a bleed site. After this I was taken down interventional radiology who stented one of my main arteries. This whole procedure and morning is very fuzzy and I remember the overriding feeling of adrenaline and primeval fear.
I was sent up to the ward and was to be observed overnight. The next morning I went back to the hospice having been told that they could not guarantee I would not have a similar event. The Dr explained to me that my tumour was muddled in amongst my veins and arteries in my pelvis. It had weakened many of the structures and also had many unstable blood supplies of its own. They could not do anything to prevent a further bleed as working with the tumour structures could make matters worse.
It has also been confirmed that I have a fistula between my bowel and my urinary tract which is giving me the perpetual nasty infections I have been developing. So things overall are not looking too rosy.
Following the bleed I stayed at the hospice for a further three weeks then finally it was agreed I was ready to go home. I was so relieved and excited to be living with my family once more. I was also nervous. I was going from a place of relative safety to a more chaotic one.
They arranged for me to have a 'rescue pack' of antibiotics in case I developed yet another infection, highly likely and sent me home with a good supply of medication. They also provided me with some midazolam to calm should I bleed again
We had been home for an hour, done a bit of unpacking and just sat down to relax when suddenly I felt very wet again. I went to the toilet and sure enough I was bleeding very heavily again. This time I panicked but remembered the hospice had given me the midazolam so we dialled 999 I took the medication and we waited. It is the longest time ever when you are waiting for an ambulance. There was blood everywhere. I told Mr H I loved him and he reciprocated. In reality the ambulance arrived within ten minutes and I went to A & E. The bleeding had slowed by the time we got there but they struggled to get a cannula in and took me round for a scan to see if there was an obvious bleed site. Unfortunately not. Again another night in the Freeman hospital for observations and home again next day for take 2.
I have just had yet another bleed which thankfully was slightly less ferocious but still worrying.
Although I am obviously happy to be home I am finding it very difficult to settle. I am like a cat on a hot tin roof. If I suddenly feel wet (being incontinent this is often) I have to go and check if I am bleeding or not. Constantly. All day. How do you live normally knowing you might bleed heavily at any time? I am trying to fight this thing but I have nothing in the armoury. It is bare. Mr H also has to deal with this. That at any moment he could possibly lose me. But even more immediate is the pressure he now has to ensure that I am not on my own for long periods or even worse alone with the children.
It is awful that as a mother I cannot be left alone to care for my children. The risk of them seeing me bleed and possibly pass out would be terrible and not one we are prepared to take. So now I have to have a babysitter 24/7. I am looking into getting an emergency call button system installed which would mean I would have a pendant to wear and should the worse happen I can press the button and they will initiate the call to the emergency services and call babysitters and even potentially visit the property.
I cannot drive my beautiful little car anymore. It is hard to think about going out and about for days out with the children or going shopping. We were planning to take a roadtrip up the west coast of Scotland and do some wild camping in the summer but this will now be impossible. It has taken our freedom.
And now this blog seems to all about a platform for me to moan and to elicit sympathy. It is not that. It is about telling you what happens, how we feel about it, how it affects us and hopefully raise awareness.
We are thankful that you listen. It helps. Thank you xxx
