1.22.2019

The 22 day review of 2019..

So, 2019 has been a year of two halves already and it's only the 22nd day. In fact a it's been a bit of a roller coaster with it ups and downs but I'll try and include the significant ones here. 
The year started well taking out my eldest nephew to have something to eat and visit the cinema. I wanted to start the first day of the new year doing something independently with family and making up a bit in the aunt stakes. The boys in particular are so good when I'm not able to do things but that's not the kind of auntie I want to be or them to remember. That doesn't mean extravagance but spending time and listening to them which in my bad days can be very tricky. 

The next day I was up to Marsden for my first CT since finishing chemo. As you can imagine the stress and anxiety surrounding this had been intense. It had insidiously made itself felt over Christmas and new year, like a huge weight hanging on my shoulders. 48hours later I found out that my CT was stable with no reason for concern at this point. Relieved was not the word! I saw a friend the next day and I practically skipped into her car, she was glad to see me looking so happy.

I booked to go and see Matilda the musical the following Wednesday to celebrate 3 months of no hospitals (this is a miracle I can't tell you). On the journey there, a call came through from an unknown number (never good). It was the dr I had seen 4 days previously. I'd had to repeat my tumour marker blood test as the previous sample wasn't viable. The results were back and higher than they should be; these numbers measure the body's response to cancer cells in the body. Being high is not good, however she was very reassuring to me and has basically prevented me having a bit of a break down. The dr explained that in me there are other things that can raise this number, that my CT is fine, and that she had taken my consultants advice and no one was too worried. The plan is for me to monitor any changes in my condition, have another CT scan in April just to be sure and recheck the blood level then too. I know that the team are incredible and have full trust in them, I know they would pull me straight in if they were concerned, but it a tiny bit of the shine of my first good report and that threat always just behind me came into view again.

Over new year I had a couple of friends who have been struggling badly. Two I know are now at home on palliative care, both I believe younger than myself. 
My other friend Michelle was also admitted to her local team after new year. Mish had been transplanted a year ago but had many issues in particular with her stomach which was having terrible reflux and this was damaging her lungs badly. I'd known michelle for years but just to chat now and then. She was my diabetes advice guru or anything else medical that went over my head. She was unbelievably clever.
She was the first person I visited in ICU, as you probably know I am not a fan of ICU and have had counselling to help with that, but I knew I wanted to be able to go in to see her. Mish was more determined than me, she fought her way back more times than I can count. She went to A&E as her lung function went down and quickly found herself in ICU, and things completely disintegrated. Mish put up an incredible fight, more than anyone could have asked of her, but sadly she passed away peacefully a week ago. I can't tell you how sad I feel. I've lost many many friend to this cruel disease but every new loss is mourning for them and the ones who've gone before. Mish was extraordinarily kind, she came home to me to massage me after chemo because she knew how awful I felt. She made everyone feel special, she was extremely clever, determined, funny, caring, and a bit naughty sometimes. It's sadder because in the last year we had grown closer and I couldn't wait for us to stabilise a bit in 2019 and have more opportunities to spend time together. I miss that this will never happen and I miss my beautiful, happy friend who understood without being told.
The last time I saw her was in Harefield when I gave out goodie bags. We sat together and she seemed to be doing better. She was so pleased with the goodies and wanted to do similar things at other hospitals. We had a great big hug before I left, I can feel the warmth of it now. Michelle, you were one of a kind, I'm so grateful that I had you in my life and could call you a friend. I'm devastated that you never reached your full potential because you had so much power within you. I miss you and will always miss you. 





What does all this mean for me? Well a bit of an epithany in a way. I've been going and doing as much as I can. Cancer threat, disease and death being so violently on your radar that it's closing in around you will do that. Make you panic that you need to do everything before it's too late. Keeping constantly busy with things  means you have moved on and don't need to think about the cancer journey you've been through or the uncertain future, the fear that one day that 'friend in ICU" will be you, you can't spare a thought for the end of life arrangements you've been putting into place because you're simply too busy. I'm sure you don't have any loss and fear and grief and pain to deal with, you know it's all been dealt with. Except it hasn't. 

What I thought I'd dealt with has simply been held back. It had to be while I was having treatment, it had to be to get through each day with this new terrifying threat and it had to be held in over Christmas and until the first scan when I'd know immediately whether my year would simply be wiped out with more treatment. Good results! Relief comes bursting out! But so does everything else. I've been dealing with it in small little trickles like the rise in anxiety, the tears coming on more often but now it's like a damn bursting. The loss of Mish has actually helped to unleash it all.

Im getting very anxious at home and especially away from home. I get completely out proportion in my fear to do certain things. I'm not sleeping very well at all, am often very quiet, dizzy, and tired. My mind feels as though so much is rushing through it that I can't make sense of any of it. Combined with grieving, loss and adjusting to a very different life it's all quite hard going. My amazing psychologist got in touch after a panicked email at 11pm one night and slotted me in for a phone session the next day. He is going on 2 weeks leave but made the effort to make sure I'm ok and to reassure me that it's very normal for this to happen. He advised me not to keep pushing myself, to slow down and cancel the things that were causing me distress and panic. Take some time to heal. It can't be rushed. I've followed his advice and though I feel more vulnerable, I also know it's the right thing to do. I still manage to enjoy some things and it's a lot more likely when I'm not physically and mentally shattered. 

Sorry this has been along blog but I wanted to get it all out. I never want people to think I'm not always so grateful for my life and my donor and everyone who has worked so hard to keep me here. It can't be all gratitude though, it can devastatingly tough and I'm navigating the best I can.

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