The past month or so has been a real tough one. I have been unwell again with my heart filling up with fluid again. This time I left it as long as I could without getting it drained off.
In the end I felt that breathless I called for an ambulance, I have never felt that breathless in my life. It was a frightening experience, one I hope to never experience that bad again.
I was ambulanced to our nearest hospital and was looked after very well. I was very lucky I didn’t have to wait too long before my treatment started. Chest x-ray, bloods taken. The following day the pericardial effusion was drained, 1.5 ltr was removed. I felt much better, I was on total bed rest, every time I sat up my heart rate would jump from 88bpm to 105bpm. my blood pressure was fine, most of the time. Over a period of nearly a week my heart started to recover and settle down. I was in the high dependency unit for some days and as I became better I was then put in the ‘step-down’ unit, I had my own room with a view and en-suite, I felt very privileged. I came home after 5 days in hospital.
I have since found out from seeing my heart surgeon that if I was transferred over to another local hospital which does the ‘window’ heart procedure whilst my heart was full of fluid the window could have been put in then. As this hospital was only told after my heart was drained, I now have to wait until it fills up again before this can be done.
After I saw my surgeon, I then had a pre-op done, so when the time comes to get it drained again this process had already been done. One of the questions I was asked was: ‘where do you have cancer?’ I took a deep breath and replied ‘my chest, lymph’s, ribs, heart, lungs, spine, pelvis…. I think that’s it’
I then realised how much this disease is eating away at me, I am becoming weaker and needing more sleep. I don’t feel motivated to do anything.
last night (thurs) I had my 1:1 time with Vince. we had a lovely time Christmas shopping for other children, went out for dinner, the time we spent together was great. whilst he was getting ready for bed he sat and cried, we spoke about lots of things, his biggest fear is me dying. He wants to be with me all the time, when he isn’t with me and his mind is distracted when he is playing with Noah and Daniel, he seems ok.
This isn’t and its not going to be easy for any of the five children or the two parents that will need masses of support, weather its professional support, family or friends.
I talk about my death and dying very openly. I compare how well I was last year to this year, what about next year? will there be one for me?
I am going to give myself a slap and shake myself out of this self-pity.
chow for now.