3.11.2019

Black tunnel

I'm not even going to apologise for not blogging because it happens all too often now.
I am in a very bad place. I'm not sure if anyone will 'get it' exactly but I need to at least try to get it down and out of me. Mish's death hit me hard, she did everything right and always pushed herself so hard to get through her health issues. We had become close since her transplant. Then suddenly this incredible life force who I felt so much of a kindred spirit with was gone. All the hopes I had of growing our friendship further, the places we would go, just having someone to talk to who understood, all disappeared with her.
I've since lost another of my friends the incredible Stacie, another bright intelligent woman and another acquaintance from my hospital also passed. I feel tbh, that death is so close. I talk about it a lot, I worry about it a lot and my family tell me not to talk about it so much but it's kind of understandable in a way. I have been dodging serious illness and death for at least10 years, my whole life really but it's become very real these last 10 years. I'm under constant threat and on top of that my friends are being picked off one by one around me. 

Facing your own death is a very sobering experience. It makes you fearful and anxious and scared. It makes you look back on your past, your present and trepidatiously, your possible future. You think of all the things you wish you'd done, admittedly they are narrowed down to the most important things but you always wish you had more time. Cancer seemed to shock all of those feeling into turbo drive. How could I possibly survive that on top of everything else. And I am so grateful I did. 

But it's a bit of an anti climax. And it's like being dragged down a very dark hole. To spend your whole life fighting so hard to live gives a great importance to each day. However, fighting for your life so often, diminishes your body making each day more of a struggle. This is not said for pity, I hate pity, but it occurred to me the other day that I have never had a day feeling really well. I can't imagine not being fatigued, hurting or something else like breathless, nauseous, or something similar for a whole day. Let alone a whole life. I can't imagine going to hospital maybe 5 times in your entire life. I read a blog post or article I can't remember now about how this woman, same age as me, went out and felt ill. She said when you feel poorly, you just want to be in your safe place at home. This was huge for me. I always feel fragile, vulnerable; there's always a good chance I'll need to rush to the loo, or not be able to talk for fear of being sick, or feeling so rundown and exhausted I don't know how I'll get home. No wonder I feel so anxious when I'm out and about! 

I have to face the fact that it's very likely that cancer will come back to visit, I'm still on the drugs that caused it because without them, ironically, I would die. My lungs could still suffer rejection. I could have to put my life on halt at any moment and start very aggressive treatment. Plus as described above, I would say the strain of treatments and illness have left a big impact on my general health now and I accommodate things that most people wouldn't even think of. Since chemo I feel as though in my painting the colours have faded, everything about me is a lot dimmer than before. I find daily life a lot harder now. 

 Yet, knowing I'm not going to grow old, seeing in very vivid detail my friends who have the same hopes and fears as me die, just makes me want to live. Really live. Again, not big things but important things, things that mean a lot to me. To go out, to see friends, to travel a little. I have always wanted to be an actress to be in musical theatre, I always pursued it after every knock back, every halt to deal with health, I could never let it go. I think that means it was meant to be mine. It's a passion that I still can't let go but in the darkest quietest corner of my heart, I know it is one of, if not the biggest thing that my health has taken from me. 
Relationships pressured to the max, no possibility of children, a limited number of years, but that will always be my biggest regret.  

Most of all I just want to be happy. I'm not happy. There are times when I'm happier, but mainly it's a very dark place right now. Imagine all of the above, the Ct scans to check for cancer that roll round too quickly, the daily body check to see how these lungs are doing, and the fear that goes with it. The daily deluge of symptoms that often rob some of the joy from happy situations and means that so much planning is involved that often events lose a little sparkle. Then the fact that you feel weak and hopeless, that potential has dissipated away. That I can't be normal, pay rent, have a full time job, have a part time job, be married (honestly I couldn't take all this baggage into a new relationship and why would anyone want to deal with all this?) have kids, have your own home, independence, a life like anyone else. My reason to get up every day can't just be to fight to stay alive. 
I have good things and believe me or not I am grateful for so much of my life and what I have. 

But I need that reason to get up in the morning, something to make it worth fighting for that's mine and no one else's. I've tried to go big, to the very basics and everything in between but lately, it feels like any little idea I have that I think might be something I could grab on to and find fulfilment in just ends in a dead end. I've never been able to sit around with no purpose, and while I adore helping others, I really feel this time I need to do something for me.

I don't know how I go forward from here, but I'm so tired of going from one disaster to another. The last 5 years feel as though my only achievements have been to survive what should have killed me. I want to live, I want to be here, but I want to have a purpose and find things to make me happy and right now, everything feels so futile.

To anyone who suggests it I am speaking to a counsellor, I just don't feel talking is doing anything anymore. 
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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.

X

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12.31.2018

2018....


2018 has been a difficult year to say the least. This time last year I was going into the new year with a newly found cancer diagnosis. It was a new hospital, a new condition complicated by my many others, new medical staff and a whole realm of things that were foreign and scary. The world became a terrifying place and once again I felt as though death had somehow caught me up and was following just out of reach behind me. I had no faith in my new team and I had so many doubts about being here for Christmas 2018. It speaks volumes that neither mum nor I can remember anything about last Christmas or new year.

In 2018 I've realised that that medical team deserved my faith. They have been utterly incredible. So have Harefield. Together they have adjusted treatment, got me ready for surgery, listened to my thoughts, fears and goals. They have all worked together and made me feel very safe and included in my own care. 

2018 made me realise once again, im tougher than I thought. I've endured 6 cycles of chemotherapy (18weekly sessions). I've had major surgery to remove half of my stomach including the tumour. I had to fight to prove surgery would be in my best interest, I recovered better than anyone including myself could possibly have imagined. I have had a clear scan and right now the cancer is gone. 

I've cried, and been scared, elated, hurt, broken and everything in between. I've had the most hideous symptoms and felt incredibly ill. I have met many incredible people. I've gained and lost friends. I've missed out on lots of things I had booked or arranged to do but became too unwell.




I don't know what the future will hold and it still terrifys me. I have scans again soon to check my body again. If something shows up another battle lies ahead. Am I even capable of fighting any more? 
The world is still a scary place.

However, 2018 proved that even in the darkest of times happiness can be found. I've had a holiday to Dorset, then Center Parcs, then Copenhagen (the trip I couldn't make last year). I've visited friends, seen the new Fantastic Beasts film, eaten takeaways, met an old friend who is extremely special to me. I've hugged my family, laughed with them. I've been surprised by people's love and support. I became a godmother and met the two youngest members of our family. I've gone to afternoon tea. I've had a spa stay. I've celebrated Birthdays and Christmas. We've been out for lunch. I've been silly, ive had fun, I've sung. 











I had a concert dedicated to me and money raised for the Marsden on my behalf. I've delivered my Easter and Christmas goodie bags. I've gone to the theatre and seen amazing work. I've received so much love I was able to cover my wall in well wishes! 




Despite all the bad times and everyday struggle, there are still plenty of good memories. If you are facing uncertainty, illness, cancer or something else. Remember, good is always there among the bad. Search for it. There will be someone to help you, myself included if I can. You will get there.

I don't know what will come next year. I can't predict it. I'm still scared but will I still fight? You're damn certain I will. A huge thank you to you all who have read my blog, supported me on social media, sent a card, left a comment and generally been there. I appreciate every single one of you. Enjoy your New Years Eve and may it be a year of good things to come. 






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