"It doesn’t matter what age you are, you need to have that conversation"
Making choices about her own death and planning for the future so her family could go on living without her, was essential to Marie-Louise, who was 24 when she was diagnosed with cancer. She had a ‘here is for now and for living’ attitude, and so lived with cancer on her terms, supported by her parents, sister, brother, husband, friends and colleagues. Marie’s Mum Lena shares the difficult, but important, conversations she had with her daughter, and all the things a mother wants to do to support her child when life throws you a curve ball…
Marie desperately wanted to stay in control herself. And that’s pretty much the way she handled those very precious 17 months, being in control, taking charge of her treatment, choices to be made and taking the lead on what was her final journey.
Marie was a beautiful baby who arrived in this world and embarked on a journey of embracing whatever we threw at her and she always made the best out of every day. She had a beautiful sunny disposition.
She would set herself goals and work really hard towards what she wanted to achieve. She was a very determined young lady. By the time she left sixth form she already had a job lined up as a trainee accountant, working full time and doing her exams at the same time. Just before she qualified, she went to work for Informa and she absolutely fell on her feet there. She loved her job. She was only there a short time before she was diagnosed.
Marie was diagnosed on 1st September 2014, age 24. Completely from nowhere, she became a very poorly girl. She went to the GP with stomach ache, was referred to hospital the very same day and didn’t come home for another three days. The diagnosis was terminal cancer, they gave us the terrible news of two months to live, up to a year if she was to accept chemotherapy. The acceptance came very quickly and the rest of us took the lead from her.
"The acceptance came very quickly and the rest of us took the lead from her."
She and her fiancé took some time out to discuss and make plans for the immediate weeks ahead. She was asked to make a bucket list and she had some amazing days out in fast cars and even had a morning with Lewis Hamilton. More importantly she married her fiancé on the 18th of September, a beautiful day, surrounded by her family and friends - her dream had come true.
It was that self-preservation
Marie accepted very quickly living with the cancer and she wasn’t fighting it because Marie never wanted to be known as a loser. To be truthful, she was never going to win, she was never given any hope of recovery. When people asked if she was fighting it, we said ‘she is living it’. We never called it a battle.
A nurse specialist from St Helena was assigned to Marie as her point of contact for any support she may need and Macmillan also assisted with advice on all financial matters; after all, the bills still had to be paid and there would come a time when Marie could no longer work.
From January 2015 onwards the chemo was starting to keep her awake at night and she struggled to sleep. She wanted to do something useful with her time so she had this idea of a fundraiser, a Masquerade Ball, and in June 2015 she held a charity ball at the Community Stadium. It was an amazing ball. The support from family, friends, colleagues and complete strangers raised £13,000 split between St Helena and Macmillan. No doubt this huge event took its toll on her health. She had given it her all in the planning and the culmination on the evening, surrounded by hundreds of guests, still taking charge and still delivering for the good of the causes. The girl did good and she was totally overwhelmed by the love and support people had shown.
Marie and I together also accepted counselling from the Macmillan team, and that was our time to let it all out. Brutally honest, the pair of us could laugh and cry in those sessions, not having to consider others and not hold back in order to spare other's feelings. We could say ‘it is what it is’, and it felt good to be able to do that. Marie would crack some very ‘serious jokes’ about her own mortality and I learnt to laugh with her, because her acceptance again was the lead – my broken heart was being nursed by her even in those difficult moments.
Marie had a short stay at The Hospice in December 2015 when she had a critical few days health wise, and again in January for a drug review. She wouldn’t go to the canteen. She wasn’t in denial about how ill she was but she didn’t want to see the reflection of other people who were as poorly or maybe more poorly than herself. She just couldn’t cope with that, so she kept herself to herself when she was there. It wasn’t vanity but while she could function and put her face on, put her wig on, while she could still get up and down the corridor, she would. This thing about the pride and dignity, about who could pop in and out to see her towards the end, it was that self-preservation.
Her home was where her heart was
There are some fond memories there because as a family, we were probably slightly mad! Eight of us normally, popping in and out but it made such a huge difference to us how we were just all welcomed. Nothing was ever too much trouble; they would give us a family room, ensure we had food available at all hours, and the nurses we came to know and love. It would never be home away from home for Marie ever; her house, her home was absolutely where her heart was. But it became that easier transition when you had to go back in and there was a familiar face. She was fine with it, really good with it. Couldn’t wait to get home though. She struggled to accept help and didn’t want to be a nuisance - independent to the very end.
I remember going to Colchester shopping with Marie and she suddenly stood still in the middle of one of the side roads. It had started snowing and she had always said ‘I just want to see snow one last time’. And there were all these people going shopping and things happening around her, and she stood there and just went ‘tick’.
"I was immensely proud of them both because with every cosy chat they had, I knew they were slowly being separated."
Marie and her sister had to have some very difficult conversations. They were very close as sisters. They took the time to talk, time to reflect, time to just be together. Marie was desperate to have this closeness, this time to be honest because she needed her sister to be able to move on. That is tough when you are 24 and 26 and your lives away from your childhood home have only just begun. But it was important and I was immensely proud of them both because with every cosy chat they had, I knew they were slowly being separated.
There are people who never get that chance to have the talks, the closure, because someone has died suddenly. We were luckier than some, we were given a warning, some time to get it right. Marie used that time to try to ease the pain for the rest of us.
I just need to tell you this bit Mum
January 2016 was a blur, January was tough. St Helena was trying to get her to make some decisions about the end of life and, it wasn’t that she was in denial, she just didn’t want to say it out loud. The only thing she said to them out loud was ‘no resuscitation’.
"We had to have those very difficult discussions very early on."
Marie and I had always been very close and we had to have those very difficult discussions very early on. She talked to me to protect her husband. We could be shopping or sitting having a cup of tea and she’d suddenly say ‘I just need to tell you this bit mum’.
I didn’t find it hard, I felt proud of her that she was able to say it to me so honestly. It saved a lot of pain and discussions later on. I’ve seen it before in families where they have been unprepared. I have known families to fall out over it and so much pain added to already difficult times.
Some of the discussions we had were about a grave. One of the things she looked into quite early on after she had been diagnosed, was making her ashes into something portable. She was determined she didn’t want a grave, somewhere people would feel tied to. She was aware that at some point her husband’s life would move on, and she didn’t want him tied down to a certain place where he would feel guilty if he didn’t return to. We’ve all seen graves overgrown and left and you feel sad and somehow that picture reflects somebody unloved or forgotten. But demographics, work, things people do in life; sometimes we have to move to other places. Marie wanted something portable so that wherever we went she could go with us. Marie’s Dad has her ashes in a tattoo and all the girls have jewellery containing her ashes as well.
Marie never told me how she wanted to be remembered, she was telling me always how she wanted the final journey to be. The flowers, for example. She wanted them to be like the flowers she had in her wedding bouquet. She wanted people to dress brightly, no black. She wanted positive reflection, she wanted celebration of a life she loved. They were the kind of things that mattered to Marie.
Even with regards to the eulogy, she’d written her own and I read it in church. She said to me: ‘Will you do me a favour mum? When you are in church and you’re doing that whole thing, can you not stand there and brag about me because I’m your daughter and you’re meant to do that, but can you just make it a bit funny?'
I didn’t brag, and it was very much about her and her outlook on life. We could all learn a lot from Marie and how she embraced life; she absolutely saw it as a gift. Here is for now and for living.
"At St Helena she had faith in the staff, in their knowledge of her condition and she knew they would do right by her in her final hours."
This is it Mum
On Valentine’s Day 2016 I woke up to a missed call on my phone and a message saying I needed to go across to her house, Marie had had a really bad night. She went in to St Helena that morning, this was her choice. At St Helena she had faith in the staff, in their knowledge of her condition and she knew they would do right by her in her final hours.
Even to this day I was not aware that she was saying to me ‘this is it mum’. She sat in the bed telling me the medications she was going to need because she was uncomfortable. She mentioned to me the three songs she wanted to play at the church, which I took on board. And then we had a quick chat about how she wanted the day to be, I told her ‘I’m here and you need to tell me if there is anything we need to say right now out loud’ and she just said no. For the next 12 hours I stayed by her side, holding her and telling her she was safe, told her repeatedly we loved her. It began to snow just after eight, you couldn’t have made it up if you tried, it felt almost surreal – Marie loved the snow.
And then at half past ten she passed away peacefully with us all by her side.
I promised Marie life wouldn’t stop
Marie was born on 11th November 1989, Armistice Day, so there are poppies everywhere, and she passed away on Valentine’s Day 2016. Valentine’s, of all the days! Red roses everywhere. I try to see both as days of life and love, and with her I had both and for that I will always be thankful.
I have thrown myself into volunteering for the local St Helena shop in Coggeshall and I take part in other events planned to raise much needed funds. It gives me a focus I promised Marie life wouldn’t stop. I promised her no tears. Volunteering keeps me out there. It keeps me busy and gives me a focus.
For every book I sell, for every mile I walk from Pier to Pier, I feel that with her in my heart I am making a difference, a difference she would be proud of. She started her fundraising at a very difficult time in her short life, the very least I can do is to continue that, knowing what a massive difference their support meant to us when we needed it most.
You need to have that conversation
I think if you are lucky enough to be given a warning to do the things that are important, I think it is also important to say the things that matter. It doesn’t matter what age you are, you need to have that conversation. It’s not about you telling your relatives how you want to be remembered, it’s about how you get to say to people this is how I’d quite like my final journey to be.
Even if you don’t go down as far as Marie with the colour scheme and the flowers. But certainly your wishes. This is where I’d quite like to be at when my journey ends. I think that the way our busy lives are now, you can never have that conversation too early. We had a bit of time, we had warning, but some people don’t.
We should be getting there in the way we communicate and say it out loud. It makes it more bearable for the people left behind. Don’t write your final wishes in a book hidden for your loved ones to find at some point; say it out loud. Even you feel your family is too close, tell a trusted friend. When you are no longer here it will be much more bearable for your loved ones, knowing they respected your wishes and did right by you.
As individuals we have loved and lost, as a family we have changed forever. I have nothing but pride and love in my heart, I was lucky to be her Mum.
To contact the St Helena Fundraising team, please telephone 01206 931468 or email email@example.com , Monday to Friday between 9.00am and 5.00pm.
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