Not much inspiration for blogging this past weeks. My life has become a round of hospital appointments, hospital admissions and chemotherapy sessions. In addition I juggle to keep going to WORK at same hospital, so it feels as if I live there.
I feel that it is really important that I go with Michael for every appointment and chemo session and he says it really helps. “Useful to have somebody besides me to hold my tea while I dunk my biscuit!” He joked. ( because the other hand has a drip in it)
Certainly one thing I have discovered is that it is difficult to make healthy choices for food at this hospital when I am living on what they sell.
Still the positive side, as I pointed out to Michael, is that in the last three weeks we have racked up over £300 in Hospital Saturday (insurance)
payments towards the PARIS AT CHRISTMAS fund as every overnight stay and chemo session day stay pays £30.
Having said that, having a loved one with a serious illness costs money. Not only is there the cost of parking, petrol (which is very expensive in the Uk) taxis and all this hospital take away food mounts up…… don’t get me started on the absolutely scandalous exploitation of charging the sick, the dying and those who care for them, to park their cars at hospitals!
I am sure those people reading this who do not have a NHS, must think I do not appreciate how lucky we are to have excellent cancer care, no questions asked, no need to worry about the cost.
Believe me one of the very positive things I am grateful for every day, is that Michaels is getting the very best treatment, free at the point of administration.
Then there was the cost of pyjamas, which Michael does not normally wear and a £50, top of the range tympanic thermometer, …. as Michael claimed our home thermometer was faulty, after his second admission in a week. The old thermometer and the new one show exactly the same temperature, but he will believe what he wants to believe anyway.
The other expense is the cost of the privatised hospital phone and TV System, which is extortionate, but you cannot leave a sick man in isolation with no means of communication or distraction! If I am away from the hospital and wish to ring him it costs me a minimum 50 pence per minute! it is cheaper to ring home from Paris! The “package” which gives the patient calls and TV, costs £10 per day, which over his six night stay cost £60.
I also don’t have the time or inclination to cook my usual healthy stuff, so ready made meals are becoming the norm.
The chemo seems to have affected Michaels taste and stuff he normally would eat lies in the fridge till after the sell by date. Usually a couple of days over would not bother me but I have become paranoid about infection and won’t take the risk.
The haematology oncology nurse is optimistic about the chemo blasting the
lymphoma (blood cancer) but, as she said to Michael, because of his underlying bone marrow problem, which suppresses his immune system, “we don’t want to loose you to infection along the way and you need to be vigilant.”
In some ways I feel like we’re descending into a dark cave, with no idea if there’s a way out at the bottom. Occasionally I will look up and marvel at the beauty of the clouds in the sky.
Of course I don’t go around all doom and gloom. Somebody today told me I always seem very positive. !!!!… Of course I try. As I said before I try to find something positive every day and it DOES work and I don’t think about cancer all the time as I did in the beginning and I don’t have an overwhelming fear of losing him all the time, like I did at first. In some ways I have come to regard the situation as “normal”
I can function,…..I can concentrate on my work. We can laugh, we can talk, we can tell each other how we love each other, we can even be grumpy with each other. We can point out the beauty of life to each other, we can go hours hardly speaking, each lost in thought……. and we can even plan the future……because until we know different , we have to.
But all this must take such an effort….. and I am SO tired!
A year ago I wrote this post,” I want to be a slut” and it is one of my most popular
Denise, even though it is hard for me at times to read about what you’re going through because it brings back many bad memories, I wanted to leave you a short note saying that you are a very strong woman and you will be alright.
I know how hard it is to be in your shoes right now.
Sylvia, thanks for your candid post. I am sorry if I am bringing back painful memories. It has occurred to me before that there are those for whom my musings may be uncomfortable to read.
However I find it helpful to document my feelings, good and bad.
My hope is also that some may take comfort from knowing that other people have been on the same journey and like you have come through.
Thanks for your encouragement.