Tick tock tick tock.
My latest scan from Tuesday 27th Feb has shown aggressive tumour progression again. It is now in my interior right front temporal lobe which means I may start to haveweakness on my left side leading to movement loss and more vision impairment.
It also means they have given me just 2 to 3 months.
It has only been 2 days since I got this news and if I’m honest, it’s not sunk in. I’m just in shock, my emotions stunned into mainly just staring into space.
I’ve been told that no treatment will have any impact and therefore they’ve stopped chemo and said there’s nothing else. For once, in this whole journey, I have, for now at least accepted what they’re telling me.
But it means, for the first time, Hope has been fully distinguished and hope enables you to live – not life or death live, but living in normality rather than a sluggish ‘what’s the point’ clock watching living. It feels like thoughts of death and dying have engulfed me, holding my body in a tight embrace especially in the darkness at 3am.
I’m struggling hard to resist the temptation of just staying in bed, drawing the curtains, putting the duvet over my head and just waiting until it’s all over. But what a waste that would be. And it’s not me. I can’t let Loli’s memories be of someone that I’m not.
So I had a word with myself and I’ve asked friends and others to think of experiences I can have with my beautiful girl in the next few months, from the smallest things to super special outlandlish ideas, that we can do to bring joy, happiness and memories whilst I’m able. Sadly I can’t fly because of the pressure apparently which is gutting as the thing that makes me the happiest is exploring new places especially in the sun!
But there are trains, boats and automobiles that ensure adventures can still happen.
I will also be doing all the memory boxes and video messages for Loli to have when the time is right.
If there are any suggestions for memory making or anything else then I’d love them to be shared.
I may have lost hope in treatment options but I’m still hopeful we can make this time super special and full of joy. I refuse to let our llives be ruled by that clock other than to remind me that time is so precious and to savour every minute.
Hi Cordelia, I am hopefully years behind you, I was diagnosed with the same diagnosis and prognosis as you last summer, I’m feeling better than ever but the truth will be told at my next MRI on 26 March.
I see you’ve mentioned memory boxes and assume you’re going to put birthday / Xmas / exam congratulations cards in there? That is what a friend recommended and I bought them all and have been slowly writing them. I also asked friends who had lost parents in their childhood and they said voice notes which I expect you have covered by video messages. Have you also seen the Dear Mum from you to me a journal of a lifetime on Winstons Wishes? I am slowing doing that to to pass on my life story to my 11 year old son.
Bloody hell Cordy, you have been so strong, so determined and just through pure bloody mindedness, have managed to beat this thing for such a long time. I think it’s probably a trait you’ve inherited from your mum( who as you know I adore- heavens knows why) . I’m sure you’re beautiful Lolli will continue in the same way. You have set a very high standard. Just remember your family will love and care for Lolli just as you would wish. Mark and I wish you all our love .
Dear Cordelia,
Your message went through me like a cold arrow. I remember, vividly, the day when the doctors delivered this same news for my son. Unexpectedly, the time we had left as a family did turn into a period of deep sweetness as we just quietly, mindfully, thoroughly enjoyed each other’s presence for as long as we had. We did not do anything particularly special other than we told each other – so often that it approached embarrassing – how much we had always loved each other and will always love each other. Brain cancer destroys much, but is utterly impotent against love. We also had the benefit of visits (not too many) from amazingly compassionate people. In short, our home became a holy place – an island in the world where only loving kindness and genuine gentleness reigned.
I am sending you much love and admiration for all the strength and sweetness of spirit you have offered us on this site. You are one of those that make me believe that this disease only attacks the best of us.
May the next stage of your journey be filled with nothing but light and love.
I’ve not followed you for long but I’m so impressed with you. My guess is that people have underestimated you before. You might get more time than you think. From my perspective, 8 months into my journey, you have been wildly successful. I’m looking forward to many more updates from you but of course, you are not obligated to do anything.
No words are right. I can’t find them…
For Loli…
Talking, explaining, reassuring
Picnics.
Just being together in all ways.
Hugs.
Wear one perfume only.. so that’s your smell that she can buy to have with her forever (I have my mums Chanel No5)
I met you in the park just after your first treatment. I was so impressed by your energy and enthusiasm for the beauty of the world, and I am so sad to read your last blog. I am sure you will not remember me, but my experience of you and your determination and wonder stayed with me. Much love.
Hello Cords, I am beyond sad to hear your news, even though we haven’t seen each other for years, I want to say what a beautiful, brave & inspirational young lady you surely are.
One of the most memorable trips we ever made was to the Outer Hebrides. For many reasons, one of which was the sheer beauty of the islands, the amazing feelings the islands provoked of peace & tranquility, not to mention the ( albeit strange) people we met throughout the islands, all so friendly & interesting in their own ways. Everyone waved to you as you passed them by & most loved nothing more than stopping for a chat. This may or may not be the kind of experience you & your daughter could be looking for ( the ferry over to the islands is quite an experience too!) but it’s somewhere that always stays in my thoughts in a happy way.
In my thoughts every day…..
Sending love & huge hugs, Jane xxx
Dear Cordelia, words cannot express my sadness at this part of your journey. I lost my baby son, and am so grateful for the few, tangible things I have.
The Edinburgh Casting Company do a hand kit you can do at home, of you and lolis hands. This, is such a precious thing as it means she can feel your hand forever.
I make memory boxes for parents who have lost babies. All the usual list of things. I am sure you have lots.
It’s such a sad thing to do, but it will also give your purpose as well.
Much love
Please seek palliative care support to help you with making memories and managing everything, they really are invaluable, and will help with with your wish list or bucket list, so sorry that you have this out come, I’ve been reading your blog since you started it … stay strong for you and a your beautiful daughter x
As I said on your instagram . . . Life isn’t measured by the days we live but rather the way we live it.
The moments you now share with Loli will be her most memorable. Given that you can’t travel too much I reckon you should share some moments that maybe make you proud of what Loli achieves.
So perhaps you are there when she sings at school, dances at an event, creates a piece of art, writes a poem. Simply makes you happyy. But being her mum is something Loli will always cherish. Have fun together and with your dear mum and dad too. 💕
Oh Cordelia, this is so unbelievably sad. Your response is amazing – and truly heart-lifting. One thing I can think of, which you might have done already, is to write down the story of your life and upbringing, your childhood, your early adulthood, and that of your parents and grandparents so Loli knows where she comes from, so to speak? I have been doing this for my two daughters as I realise I never listened properly to my parents when they talked about their pasts and now wish I had as there are so many gaps – which is why I am doing it for my girls. Sending much love and thoughts xxx
Dear Cordelia,
I’m in tears.. I’ve followed your posts with the deepest care, admiration and respect for you, as well as utmost optimism and hope — — noting how different your GBM is from what my Dad’s was, and how your GBM is/was one where there genuinely IS hope.
Your ideas for the coming months are beautiful; perfect. I wanted the same for my Dad as you want for you and your daughter. So, ashesitant as I am to write to you about anything medical, I wanted to briefly share how it was that we were able to give my Dad the maximal wellness (“maximal quality”, we called it) that we wanted for him, for however much time with us he had left. We did it with Temozolomide — — daily Temozolomide (the “RESCUE” regimen). TMZ for no other reason than that he tolerated it pristinely (blood work and everything) and that it did wonders for all of his symptoms. Nothing more. This was his palliative chemo regimen a year before he died, and it remained his palliative chemo regimen until the week before he died. Our oncologist’s metrics of what the TMZ would/wouldn’t do or would/wouldn’t change weren’t our metrics. By their metrics, they estimated that the TMZ would do nothing. By our metrics, it gave my Dad absolutely everything. And, as it turned out, it *did* do something on the oncologist’s metric: it *did* prolong his survival, as well as miraculously control and improve his symptoms.
Caring about you and thinking about you all the way from 🇨🇦,
Claire
I came across your last vlog. 2nd March.I’ve not read any of your blogs until now. As a registered nurse who managed a neurology ward I could resonate with where you are at and what you have been through. My heart is filled with admiration for how you have met your challenges head on ( no pun intended!) . Any life limiting diagnosis is a shock to one’s reality and your perseverence and tenacity and care about how your illness is and will effect your daughter and close family members has proved your strength of character and radiance of spirit. What a legacy for your daughter in itself !
Being given a time frame for life does focus the attention to the things that really matter in this lifetime doesn’t it? I have learnt through my interactions with families in this situation as a general ward nursing manager and bereavement nurse (and including caring for my own younger sister with alzheimers) that it is in the simplicity of ‘being with’ that matters and not so much in the organising of any ‘doing’ , which in itself can sap much energy. A peacefilled serenity can be found in allowing the ‘doing’ to rest and just ‘be’ with the now and what is.
Finding peaceful places to just ‘be’ with your daughter where things are not necessarily done , (even if thats cozying on a setee with hot chocalate and a favourite movie) where silence and nonverbal communication is normalised will prepare for her times ahead without your physical presence.
Believing that we are all spiritual beings and that there is something bigger and unseen about the universe helps many come to terms with their fate. There is certainly much evidence to demonstrate that we are more than our physical bodies and that consciousness lives on after our physical death. ( see nextlevelsoul podcasts)
Using metaphor storytelling books to give a sense of this wonder to your daughter might help her feel connected to you spitually after your physical death. There are many fabulous books for children about loss and bereavement that you can read with your daughter and finding one that resonates with your spiritual being and spending the time reading them together will be such a beneficial preparation and comfort for her eventual loss.
Books and movies that normalise death as part of life and how the Love shared remains and lives on through us enables those difficult conversations.
I have learnt that Children remember the simplest of times and not necessary the expensive, time consuming and away from the home environments that they are comfortable in : where Sleeping in tents in the garden with family/friends is remembered ( because it is more connected to their own self) and is treasured more deeply than that trip to America for Disneyland!
Fill your days with only the people and things that really matter and bring you joy and tranquility of mind. In turn you will radiate that joy and tranquility to those around you.
Love & Light and many Blessings upon you and yours.
I’ve been following your journey for a while and I can’t even put into words how sad I am having just read your last entry.
An experience you could consider with your family is trying to see the aurora. The sun is at its peak activity now and there’s many places in the UK that don’t require you to fly (Wales, Cornwall, Scotland) and can be visited over a weekend.
Big hugs
Marta