There has to be more ‘up’ days than ‘down’ days….

It was Valentines Day on Friday and cupid doesn’t have to do much around here for the love to be flowing. Pete and I decided not to go to town on gifts and meals etc, so after a very busy day for Pete and a highly emotional week for me, we were happy just to have a cuddle watching a comedy on the sofa. But in true Bear style, he bought me a bunch of red roses and prepared a lovely rose bath complete with red rose petals. Bless him. He never wants anything in return but loves to spoil me rotten. I then slept like a log. Thankfully I don’t lose sleep when stressed, probably due to the big Bear arm that keeps me safe during the midnight hours.

The weekend was great, dressing up and going out with friends, eating delicious vegetarian Thai food and having so many laughs. Sunday my mum arrived and we prepared bacon butties for a lounge full of men watching football. Good times…

But last week I have to say I was having a hard time. Thursday I had a meltdown. I have been trying to organise going to Germany for more treatments. In a number of emails it was transpiring that I couldn’t have an appointment for the next few weeks which is when I figured it would be best to travel. I would have a good blood count as chemo would have ended and I wanted to get a treatment in before I go for GcMAF (which I have been told is very complimentary to immunotherapy). I was given dates to have leukapheresis (full blood taking) again. I couldn’t understand it as I had enough blood taken when I went for treatment in November. I was then informed they had started using my blood as they believed I would be there today! I was so confused as to how they would think that when I hadn’t given my scan results until Tuesday afternoon?!  Then nothing. Communications went cold and I was left dangling. I was so stressed and upset?! So many questions unanswered and desperate to get something booked I decided I simply couldn’t deal with it anymore and felt at my wits end. I offloaded to Pete who sent a very well worded email and we finally got a reply that evening and things started to become a little clearer. I know I am hard work and high maintenance but I felt like everything was conspiring against me.

This had a knock on effect for me and I couldn’t pick myself up. I had a bad day to say the least. I felt wrecked and my thoughts were dragging me down. I kept thinking that options were running out and  what had I changed in the last six months that has meant the canSer is still growing? I might have even gone as far back as thinking, ‘why me?’ (You know it’s really bad when that thought creeps in)

I had a coaching call for my health coaching course to the U.S Thursday evening and I had a heart to heart with my coach. Ever honest I told her I was feeling low and how it isn’t like me. She was so supportive and made me feel much better but she could hear the stress in my voice to the point where I was trying to catch my breath. Sometimes I wonder if putting it all in my blog scares people and if it’s a little too much information but my coach suggested that it could be good for me. So here I am telling the world how I feel.

You see, I have bad days too and getting less than good news really does have a knock on effect. Yesterday despite the weather being amazing, having a lovely time with my man and having the pleasure of mum arriving for the week I felt discomknocerated. (Great word right? Pete taught me it.) I felt unsettled. I couldn’t put my finger on it and I am having trouble releasing worrying thoughts.

I am trying to use my thoughts to focus on the canSer going and getting smaller but I also feel not giving it too much thought is a really positive thing. I don’t want to get embroiled in worrying and looking for a resolve. I want to live my life. But if I am being really honest then I should say that I keep having really morbid thoughts and flashes of what will be if I die. Now I know we will all die but I mean I really do feel that my survival is being threatened and I am now really worried that I may not make it to my 40th birthday! I know crazy right?! I have never doubted myself and I believe my existence will definitely be for more than five years. But this has really worried me. I really felt so settled before. My plan was solid, I was on top of the canSer and as long as I could keep it under wraps, control it, that I would be here for many years. As I keep saying I feel great. If I can continue to feel that way then there is nothing to worry about. But I am worried. I am so concerned as to how quickly health can change. I know from speaking to people, I have seen it and I also receive emails from people I have only just been in contact with who sadly have passed away so suddenly. Mortality is such a weird thing. I don’t want to spend my time worrying about this.

But sometimes I just have to say it. It sucks. I am thirty eight years old and I want to be a little bit ignorant and revel in the ignorance that I should be alive for another fifty years! And I guess who’s to say I won’t be. We are all going to die. I just guess that I feel like I am being presented with death all too soon. I suppose sometimes I feel a bit jealous that other people don’t have this to think about. I just want to live! And there we go back to being me again. There is nothing stopping me from living. In fact if I don’t want to wish for the worst then living is exactly what I need to do.

It’s like having therapy, putting it in words on here. My positive nature always shines through and sense prevails. I know what I need to do and I know I have so many more options. I needn’t worry about what may or may not happen. I wonder if I am already assuming the next lot of treatment I am booked to have, will not work. Part of me thinks that, maybe. Just a little. I like to think that I am just planning ahead for every eventuality. Others could see it as being negative.

So that’s that. I am plodding on and trying my best. I hope that I am not just going through the motions. Every supplement, juice, exercise, stretch, positive thought and plan, I hope is having an effect at elongating my life. I have never ever listened to the doctors when they told me it was incurable. But sometimes it hits me like a train. I am afraid of getting ill and dying. There I said it. Sometimes I like to have a good old cry. But then I am a girl. And we cry real good. At nothing mostly. An advert on TV or a cute you tube video. But I cry because I want this thing to stop. I have had enough of this living nightmare and I don’t want to put my loved ones through this anymore.

But I can’t make it stop. No more than I can make time stop. I can only do what I can do. That is, look after myself, love as much as possible and keep trying because there is no other option. I am not about to lie down and give up. As long as I have the energy and breath in my body I will live my life as happy and as full as possible. I urge everyone to do the same. Never give up and remember there has to be more ‘up’ days than ‘down’ ones. It puts everything into perspective.

The moon looked beautiful last night. I can’t wait to see it again tonight. There, the little things mean so much more when you put it in perspective. Be grateful, be happy and love as much as you can. That’s a good motto to live by I think?

Right now that’s off my chest I can move forward…. Thanks for listening. X

 

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