The irony is not lost on me that it is April Fools Day and I am technically ‘full on’ back at work following broken up weeks of chemo and isolation! So, I’ve chucked a little days leave in tomorrow for some self love. As its a Monday I spend the day trying to get some motivation going, all the while knowing that I am off tomorrow and I am going to have a lie in and do sweet nothing!
My day off!! I have a lie in (after obviously getting up for an hour and rallying the troops out of the door – sandwiches made, teeth cleaned, uniforms adorned, bags packed and kisses dished out). When I finally got up I decided that I needed a plan for radio so rang the ward and asked them to confirm my appointment times. I don’t like not having a plan (well, not for the most part) so this has stabilised me somewhat today.
However it has been the only thing keeping me on an even keel. I have dry skin, am tired, have puffy eyes, stuck eyelids with no eyelashes, feel generally a bit shit, thinking why me, tidying after my cubs, ironing, and cleaning. Generally feeling sorry for myself while trying to maintain normality. And I realise that this is why work has actually been good for me. Months back when I was told by the lovely chemo nurses I had to stop working I reacted in horror. At the time I thought I needed work to keep me sane. Today I know I need work to keep me sane. Left alone to my own devices allows dark thoughts to creep in and my mental health starts suffering. Much as work is a little bit bonkers at times it is a big factor in keeping me going, being a welcome distraction to me and allowing me to regain some control over my life. It may not be for everyone but it has been my god send and I absolutely believe my family would have suffered more if I hadn’t had the distraction of craziness (I also love it so that helps!).
No. Just no.
You couldn’t make this up. I missed a call today from the new hospital who were about to administer radiotherapy and when I rang them back, the Receptionist advised that I needed to come back in for another CAT scan as the Oncologist wasn’t happy with the last one and wants another one done. WTAF. No detail beyond that. No reassurance that nothing was majorly wrong. No clue as to what could be wrong. Just that I needed to come back in.
Then the kicker. This would delay my radiotherapy for a week. Another whole week. Which would take my end date of radiotherapy right to the end of May when we were supposed to be going away for a week for the man cubs birthday and a celebration that we were done with Cancer and active treatment. That we had conquered this last year. However we are now being pushed to the limits.
The lovely receptionist then proceeded to ask if ‘that was ok’. Well no. It’s not bloody ok. It’s frustratingly not ok. What a stupid bloody question to ask me. Again I am floored by the utter lack of empathy by the staff that work the outer perimeters of treatment and their lack of training on how to deal with people who are already on the edge or passed tipping point. I can’t work out where I am today.
I rang the man cub in hysterics, which wouldn’t have helped him at work neither. But I can’t put my lovely work colleagues through my hysteria. They have to cope with my absence and general lower work output as it is. The last thing they need is me having a meltdown in the office!! I spend ten minutes ranting to no avail to the man cub, as he can’t change this outcome. Then I pull myself together, give myself a pep talk that CP would be proud of and crack on with the day.
Tonight I have got madder and madder though. I’ve been closer to Dr. Google than I have ever been, just to understand what this might mean. But I’ll send myself crazy mad with alternatives and my pragmatic head is holding its own that it won’t be helpful. I am also mad that my treatment will be delayed by a week – because what they’re actually saying is that it will take a week for the oncologist to review the results. I appreciate her caseload must be hundreds of people, but surely just get me through the process and I’ll be out the other end quicker and off the caseload. Aaaaaaaagh. It’s been a long night of procrastinating and swinging between cross and mad or mad and cross. There is a very fine line.
Wake up today in a corker of a mood, having gone to bed in a corker of a mood. No amount of sleep was changing that today it appears.
The morning didn’t really get better. As the cub is giving out the hugs and kisses as is obligatory for most mornings (she’s a right hugger and as I said, she’s getting a bit more clingy now this final phase is kicking in), she asked me a question.
‘Mama, what do I do if I miss you [insert my first internal reaction of ‘while you’re at work?].
Nope – this was the actual conversation:
‘Mama, what do I do if I miss you when you die?’
………………………………………….cue a little bit of silence as I process as quickly as possible how I respond to this while also simultaneously trying not to burst into tears and reveal that this is my biggest fear and why I saw a Clinical Psychologist in the first place.
As I stuttered through a response while the man cub is oblivious to this in his morning shower, I reassure her that I will always be in her heart and memories. That she can always conjure up images of good times we have together and I will always be hugging her wherever I am (I don’t even believe in an afterlife but at that minute I wanted to believe it for my five year old). After a few more real hugs pacified her, and the distraction of morning toothbrushing took over her main thoughts, I retreated downstairs to deal with the mundane tasks of getting ready for work.
How I didn’t break there and then I’ll never know. I’ve actually held it together really well today. But I know that this is going to get to me. This is going to pick away at my edges of sanity when I am having my dark thoughts. Because my five year old innocent angel has had to talk to me about death and question what she will do without me. Five year old. At five she shouldn’t be worrying about a singular thing in her life apart from whether she has been allowed to dress herself in what she wants to wear (and to be fair she normally wins that battle as I can’t be chewed to ever have that fight!). At five she should be worrying whether there is enough paper in the house for her to cut, craft, glue, make crap out of, or enough glitter in the world! Not her mama dying.
This week was supposed to mark the first full week post chemo that I would return to a level of normality. What I have actually done is gone backwards. Hit a wall, and then travelled backwards. Cancer and all of its gifts has continued to rule my life and that has thrown me somewhat. But I will get through this.
I will have this last part of the journey. I will get through it. I will be there to hug my cub as many times as she wants, whenever she wants, always. She has my heart and soul. And I will have this for her.