#AlexIsALLin

See Alex's blood stats

So far Alex has had
17
blood transfusions

Alex has inspired
127
people to give blood

That’s a whooping
59,690ml
of blood

Life without Alex

Life without Alex
August 21, 2017

For those of you who have been following Alex’s blog and don’t know her personally we sadly lost Alex in February. I know there were a few of you she spoke with who had been or were going through treatment and she found a lot of support and resilience in talking to those in similar situations. I am so sorry to be the bearer of this news and sorry it didn’t come sooner. Don’t let this cast a dark cloud over your fight but take inspiration from Alex’s. 

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For weeks, even months now I have been telling myself to write down how I am feeling, memories that come to me, and things I want to say to Alex. But I haven’t. Why? It’s 6 months on Wednesday since Alex passed away and I have not approached how I feel honestly. I have talked a little and written a few texts to Alex. But that’s it. No one tells you how to deal with grief and no one can. I’m not even sure I know what it is apart from a label to give some sensation and process you’re supposedly meant to go through. 

Many of you who know me well, who I’ve let in, will know I’m not good at talking about how I feel. Mum and I often have our best talks over text and I don’t think that’s necessarily bad. I find it hard to verbalise emotion as it’s too overpowering so often I become closed off or mostly I just cry!!! So I am hijacking Alex’s blog to talk about my experience over this 6 months and to just write….i hope others might gain something from it. To start talking about grief and dealing with losing someone so close. After all Alex wanted to talk honestly about her experience with leukaemia and treatment so I should follow suit….

To begin with in the hours and days following the early morning of February 23rd 2017 where I felt Alex leave this world i think I only experienced shock. Despair of course, but also an out of body sensation where it wasn’t happening to me. I’d seen it countless times on greys anatomy and I just felt like I was watching an episode where the family are told what’s happened. As a lot of you know this virus came out of nowhere and struck Alex hard. She fought of course but before we knew what was happening it was over. So it was very difficult to accept. To understand and appreciate what had just happened. 

I’d never seen someone die before. That sounds so obvious writing it down. But I think that explains in part how I processed things in the following months. The only losses I’d experienced were my grandparents when I was very young. To be told that your sister was not going to be resuscitated again after a long period of CPR was like being punched in the chest. You want to argue with the doctors but it’s a losing battle and that’s a real struggle to get your head and heart around. The helplessness. I can’t even explain. It’s nothing I want anyone to have to go through. And then to see her slip away was indescribable. All I can hold on to is we were there when she went. Holding her. That image, the sensations, the feel of her skin as I kissed her goodbye. I will never forget. It was horrid, but I hope it was peaceful and comforting for her. In a way, I believe the fact we were there and it was so unreal helped. Not sure why. It haunts me but it also comforts me. 

The following few days I had a huge amount of support and love from friends and for that I am eternally grateful. The heart wrenching, chest crushing feelings that wash over you in the early stages of grief were there and I felt I couldn’t breathe but had those around me to breathe for me. You know who you are. 

I still find it hard knowing that many of Alex’s closest friends never got a chance in the last few weeks to properly tell Alex how they loved her and to say goodbye. That hurts me too. I hope you don’t dwell on that. I’m sorry you couldn’t come to her. But she knew she had love around her. So much. From the beginning. 

The first month arranging funeral plans and seeing friends a lot meant it was sort of clinical, I’d managed to disassociate myself with what had happened. A coping mechanism I suppose. Also mum and Mike were so distressed I was trying to take some of that away perhaps. So I was focused on raising funds to remember Alex and say thank you to Southampton. We saw her doctors and nurses and celebrated who Alex was. I slowly got my routine back and returned to work. Life frustratingly waits for no one and moves on so I did too. I told myself Alex would want me to be happy but deep down I’d found myself feeling guilty for not being more distraught. Our minds are strange things. Some days the Little things would upset me but then I’d go days being OK and wonder why I wasn’t depressed. Why I wanted to be I’m not sure. Probably felt it’s what Alex deserved. The strongest emotion in the first couple of months was I found I’d be angry at people (people I didn’t know) often for no big reason. But work, my friends, Alex’s friends, Callum, mum and Mike were all there for me in their own ways and this was so important. Although I didn’t talk I knew a hug or text was just a moment away if needed. I hope I was there for my mum. She has the most amazing friends but I also wonder if I did enough for her….

Now the excitement of summer plans is almost over I’m still as busy as ever but I’m finding things harder and guess that’s why I wanted to start writing (my way of talking). many questions continue to circulate my thoughts and maybe always will:

  • Am I inherently selfish for being able to get on with my life?
  • Do my friends think I’m cold for doing so. For talking about Alex without crying. For being happy
  • Am I cold?
  • Why did this have to happen? Why am I here and not Alex?
  • Are my friends scared to approach the subject now especially as I seem OK?
  • Will my mum be OK? 
  • What will the future look like?

Then the more tortuous thoughts of: I should have done more, I should have been there more for Alex, I should be doing something more now, I wish I’d stayed with her that night. Why didn’t I stay. She would have stayed with me. 

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The hardest and most prominent emotion is that I’m exceptionally sad she can’t experience this wonderful world anymore. I’m sad for the things she will miss in her life and i can’t share with her in mine. However, that she had her 30 years is magical and I remember that every day. There was and is so much to Alex. Such a huge energy that I can’t really see everything she was and is to me right now, like I need to remake the puzzle, if that makes sense. The difference I’ve noticed recently is that I really want to remember and embrace things about Alex and about our years together rather than put them out of my head. 

She well and truly embraced life. Seems such a cliche but I can’t not say it because it’s so true. Even her illness she embraced. She wasn’t afraid of it. She didn’t ignore it or shut down. She shone!!!! She has helped others through it in life and hopefully in her death too. It is this that helps me appreciate life so much more and I am still angered by people who take life for granted and/or the life and love of others. 

So…. That’s been life without Alex in as best a way I could describe. Life is odd. Life is precious. Alex is somewhere in the universe just not physically anymore. I feel happy and sad together it’s confusing. What I do know is She is a continuous inspiration to me. I believe she’s helping me get through this and is by my side. For me and for her I want to continue with her desire to raise awareness. So after sometime I am going to post again but about the virus so you all have an understanding of the risks to those who have undergone stem cell transplants and what happened…. then I hope to continue the writing she did on ALL and try to promote donations of blood, platelets and stem cells. I will be doing the London marathon in her honour next year (hopefully) wearing the weight of half the transfusions she received (~7kg)

Please please talk to me about Alex and about how you’re doing. I always think of you all. Also, If you want to contribute to the blog please contact me and please keep posting your blood donations online and sharing 

Love you always Alex

Harriet xxx

  • Grace Ward

    Hi Harriett, Thank you for writing this brave post. My name is Grace and I also write a blog about Leukaemia (leoaftercancer.blogspot.co.uk) and I used to chat to Alex through Instagram, particularly about GvHD. It’s so nice (nice?) to hear about her final days because I know this sounds weird but when you only ever know someone virtually and then they pass away you don’t get any closure and I found myself deeply sad about her death for a long time. She was very supportive to me and gave me loads of great advice about ECP and just understood everything I was going through. I really miss her. I am sad I never had the chance to meet her. My heart goes out to you and your family, I can’t imagine the pain you have gone through and continue to feel. I have recently suffered a bereavement in my family of a beloved cousin and can relate to your feelings of guilt for not feeling depressed all the time, it’s like you feel like you should never be happy because your loved one isn’t able to experience that happiness too. I think everyone grieves differently and there is no right or wrong way. I look forward to your future posts. Best wishes, Grace xxx

Quote of the day

“Strength does not come from physical capacity. It comes from an indomitable will.” Gandhi

December 11, 2015

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