To say I have been through the wringer is an understatement, mostly due to myself and with a little help from oncology.
Where to start.....
Feelings, well my feelings have been on quite a roller coaster ranging between happiness, a terrible loneliness, and sheer anger! The happiness is the day to day life that is still here, having my Jon still here and knowing that we love each other more than life itself.
The loneliness is at trying to keep hold of myself while doing all I can to care for and love my Jon.
The anger started rising around the time the tears dried up. Crying (from time to time) was/is a release of tension for me, and I feel so much better when I stop and pull myself together. But for some reason for a period, the tears just wouldn't come and so the tension built up.
What was I angry with? The answer to that was everything! It is, I have since found out, a normal thing in the life of anyone who is dealing with something stressful in their life.
I was so angry with the situation Jon and me find ourselves in, resentful that our life has changed so drastically with no hope of ever getting back what we once had. I have tried all the way through this journey (there's that damn stupid word again!) not to dwell on the past and what once was, but now and again it all catches up with me.
I am angry that you get told one thing one minute, then it changes the next minute, I am talking about the medical outlook on Jon's health now, and not the prognosis, that never changes. I want certainty, and realistically I am never going to get that am I?
Not being able to plan ahead with even the simplest of plans is so frustrating!
Anyway, my saviour in all of this anger and frustration has been my wonderful counsellor Helen from our hospice. That lady has a way of presenting the picture I have of life in the present, in such a way that makes me feel all of my feelings are actually worth the time I spend on them. As long as I work through them, get them out there, and put them away dealt with.
With the help of Helen I have taken some time and have been able to sort out the negative feelings and dwell more on the positives.....and yes, there are so many more positives than you might think.
Since doing that, the tears (not too often) have returned and the tension gets released.
Jon has been on a month of steroids, which has just come to an end.....and now the "crash" of ending them has started. The main one at the moment is the extreme fatigue, and breathlessness, this hopefully should level off in a week or two. He finds this very frustrating as it limits his daily life in what he can do, but, we both learn to order our day so he can get the most out of it.
I cannot explain in words just how heart wrenching it is to have to watch all this going on, and not be able to stop it. All I can do is make sure all the medication is taken and that he eats/drinks and sleeps as much as he can. Doesn't seem enough somehow.....
It may sound to you the reader, that life is running at a low right now....but that wouldn't be completely true, we do have some wonderful times! Just having the company of this man I love dearly, watching tv or having a meal together, sharing funny moments and jokes, outweighs all the less happy times.
All of what we are going through has made me appreciate the "small things" in life, things that I have overlooked before. It may sound a bit silly, but taking the time to stand and look at the sky at night, the flowers in the sunshine etc and even the rain as it falls. All things I have taken for granted before.....this is life!! It's not until your life is shaken to the core that you realise just how much is going on around you that you simply "miss" out on every single day.
A week or so on from the last paragraph and things changed, the steroid "crash" came and caused a few problems. All of Jon's symptoms worsened and eventually I had to get the Macmillan nurse in, I cannot praise her enough, she was on it right away and sorted more meds out to help. He is now back on steroids for a while longer, then my darling will have to go through the "crash" yet again.
Sometimes I feel sadder than at other times, at times like that, I look around the rooms in our house and look at all the wonderful photos that remind me of all the special times we have been privileged to have. We still have more special times ahead of us, of that I'm sure, and those times will keep us going and see us through :)
I read alot from other "carers" and I think the most central thing in their/my life, is fighting to be heard by medical staff. I/we get the impression "they" know best and I/we know nothing........but, we KNOW the person being treated, we love them dearly and know when something isn't right. My greatest wish is to be heard........without being patronised or even ignored. In my case, I know my darling, I know when things are not quite right. The only exception to this is our Macmillan nurse, she listens to both of us, and she doesn't make me feel like a spare part in my own life.
This darling man is the reason I will fight to the best of my ability to make sure he gets the best care possible, it's what he deserves!! AND he would do the same for me.........that's what love does, simple as!
Onwards and upwards! This month is Jon's birthday, he will have made it through a whole year of getting "money out of this bloody goverment", meaning his pension lol. This is something to really celebrate!
Now I have to try and figure out what on earth to get him for a present, we have had this for years, me asking what would he like and him saying "nothing", ha! Don't think it would go down too well if I decided to take him at his word :)
That scenario is just a little peek back into "normal" life, and that is vital to keep us going, and by god we will keep going.
