August 15, 2022

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A blog about a girl's life

Misplaced within the system: Susceptible youngsters in England miss two years in school rooms due to an absence of particular faculties

I feel we as soon as counted that she’d had a complete of 9 operations...
I feel we as soon as counted that she’d had a complete of 9 operations (Image: Bea Downing)

In Could 2017, my older sister Harriet (Harry, to me) was identified with a main excessive grade medulloblastoma — a uncommon mind tumour in adults. 

She was simply 27 years previous on the time.  

She had been having complications for round six months, which had been getting progressively worse. Initially she thought they could be migraines, which do run in our household, however Harry observed that they received worse when she was transferring, lifting issues or exercising. 

Harry went to the physician and she was given migraine treatment in addition to a referral for an MRI to be carried out in a couple of months. Nevertheless, with a household vacation developing, she determined to have a personal scan as an alternative. 

The specialist known as her simply hours after she had the scan and informed her to go to Hammersmith A&E by taxi – not the tube. 

They informed us they’d discovered a tumour on Harriet’s mind.   

All through her sickness she was fiercely courageous, taking up each single therapy that was thrown at her. Following her preliminary mind surgical procedure, she had every day chemotherapy and radiotherapy, which we might drive to — we’d then watch Love Island in mattress collectively afterwards. 

Specializing in mundane every day duties helped us get via today as we appreciated the particular time collectively greater than ever. She had such a optimistic perspective in these first months and she made associates with so many nurses on the Royal Marsden Hospital that it was simple to overlook that she had a Grade four mind tumour. 

Fundraising for the Mind Tumour Belief abruptly turned a giant focus for all of us

I feel we as soon as counted that she’d had a complete of 9 operations, a whole lot of IV chemo periods, 45 radiotherapy periods, 485 days of oral chemo, cyberknife, focused drug therapies and 12 platelet transfusions. 

No matter they urged for her, she tried it and she by no means as soon as complained, both. 

Initially, issues seemed promising. As Harry celebrated her 28th birthday, her chemotherapy got here to an finish with the affirmation that there was no proof of any tumour remaining in her mind.

Bea's sister, Harriet, outside in a garden
Harry was so pragmatic after we obtained dangerous information (Image: Bea Downing)

However simply six months later, Harry discovered a lump in her neck. 

Her GP stated it was more likely to be a reactive lymph node as a result of her therapy. However a routine check-up with her oncologist and follow-up surgical procedure discovered that the medulloblastoma had unfold.  

This terrible information — that the cancer had returned and Harry would wish extra most cancers therapy — got here simply two days earlier than Christmas.

Main mind tumours hardly ever unfold exterior of the central nervous system however that’s what had occurred. 

Harry had surgical procedure to take away 160 lymph nodes from her neck. However scans after the surgical procedure additionally confirmed that the most cancers had unfold elsewhere too and so she wanted quite a lot of chemotherapies to try to maintain the most cancers at bay. 

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Only a few days after Harry was first identified, my brother Henry, Harriet and I made a decision to arrange a supporter group for The Mind Tumour Charity and lift funds to plough into analysis on excessive grade mind tumours. 

The organisation is the world’s main mind tumour charity and the biggest devoted funder of analysis into mind tumours globally. It’s due to Harry’s particular tumour kind, how mind tumours typically hardly ever unfold, and the way Harry’s tumour kind doesn’t typically current in adults that we wished the cash we increase to be funnelled straight into this particular space of analysis. 

We have to know extra about this devastating illness. 

Fundraising abruptly turned a giant focus for all of us. We quickly set about organising rounders tournaments, second hand garments gross sales, a black tie public sale, gigs, carol providers and lockdown on-line wine tastings.

Many associates received on board to boost cash too and so they have run triathlons and marathons, held artwork auctions, bake gross sales and cycles all to assist our fundraising and assist The Mind Tumour Charity. 

However in June 2020, we had the information that each most cancers affected person and their household dreads: we have been informed that Harry’s therapy was not working. 

Harry was so pragmatic after we obtained dangerous information. She would immediately begin planning a social or charity occasion to boost more cash. I feel this was a distraction but additionally understanding that she had restricted time left spurred her on to squeeze each ounce out of life that she might. 

We spent the next yr collectively as a household consuming scrumptious meals, ingesting wine and benefiting from the time we had left. 

Harry’s fierce willpower and dedication in the way in which she approached her sickness and dying is one thing I’ll by no means fail to be in awe of. 

Taking care of her at house within the months earlier than she died was vastly traumatic and but additionally an unimaginable privilege. Her perspective and perspective on life has influenced me enormously and adjusted the way in which that I view issues without end. One of many ultimate issues she did was make donations to the 2 hospices who helped to take care of us at house — even then she didn’t cease pondering of others. 

Simply 12% of individuals survive a mind tumour analysis for greater than 5 years

Life is rarely to be taken without any consideration. Harry’s stoicism and intense bravery enabled us to look after her with minimal assist from others, having nurses solely are available a few times a day to manage ache reduction. 

All of us moved house throughout this time and we took an prolonged time without work work to be with her. It meant we have been in a position to spend 24/7 collectively as a household, watching ridiculous TV programmes, laughing collectively, crying collectively and bonding in methods solely those that have been via such a care will perceive. 

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It was a relentless supply of hope and positivity for all of us that our fundraising would hopefully assist others — and for Harry, that she was leaving one thing behind in The Harriet Downing Fund: a devoted fund which is sorted by The Mind Tumour Charity to particularly increase cash and consciousness in Harry’s title. 

Bea's sister, Harriet, by the sea
Harry was a drive of nature (Image: Bea Downing)

Now we have to this point raised over £230,000 for The Mind Tumour Charity with plans to boost rather more. It’s with nice pleasure that Henry and I, together with our mum, keep on Harry’s fundraising legacy and proceed to unfold consciousness, spurred on by our unconditional love for Harry and with her voice in our heads telling us that we should not quit! She is our inspiration and at all times might be.  

Harry was a drive of nature. She had an infectious persona and she was the form of person you meet and develop into associates with immediately. Her power was brighter than anybody else within the room. She had a means of caring so deeply about these she cherished and, on the similar time, being brutally sincere and telling everybody precisely how she noticed the world. 

She was at all times unapologetically herself and I used to be fortunate sufficient to have her as my older sister and my greatest good friend. 

We not too long ago celebrated what would have been Harry’s 32nd birthday with a gaggle of her associates at a Thai restaurant in Clapham — a spot Harry cherished and the place she typically selected to have a good time her birthdays.  

After I went in to pay the deposit, the proprietor requested if it was for a birthday. I replied sure, it’s for my sister Harriet’s birthday, to which she replied: ‘HARRIET! What an incredible girl!’. She didn’t know that Harriet had handed away.   

Equally, I had a message on Instagram some time in the past from a beautiful woman who we took a pottery class with final yr. She stated: ‘Harriet was an unimaginable soul who had a big effect on me after that quick three-hour class. I nonetheless speak about her and her fearless, robust and impressive outlook she had on life.’ 

It truly is inconceivable to say what number of lives she touched and the way a lot pleasure she dropped at so many individuals. Contemplating her comparatively quick life, I’d say that is fairly an achievement. I hope I proceed to have these encounters with strangers who inform me how hilarious, beneficiant, decided and type my sister was. 

Simply 12% of individuals survive a mind tumour analysis for greater than 5 years. 

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Whereas there have been some encouraging steps ahead in each analysis and care in recent times, progress isn’t taking place quick sufficient. There must be better funding in world-class analysis, to assist diagnose the illness earlier and to higher perceive the causes and discover new remedies to be able to give these affected hope of extra time to dwell and a greater high quality of life. 

The Mind Tumour Charity is decided to take a position one other £40m in forward-thinking analysis over the subsequent 5 years to assist double survival and halve the hurt the illness causes. Within the meantime, it supplies very important assist and assist for folks affected by mind tumours and the large psychological in addition to bodily trauma they’ll trigger.

It’s now 5 years since my lovely sister Harriet was identified with the mind tumour, which she would then die from when she was simply 31 years previous. It’s troublesome to place into phrases the humongous gap she has left behind in our lives. Regardless of understanding she was terminally ailing for a very long time earlier than she died, nothing can ever put together you for dropping somebody you like a lot and have by no means identified your life with out. 

Sooner or later, there might be a treatment and numerous different sufferers and households will face a really completely different final result. 

Nevertheless, within the meantime, every donation is a step in the direction of not solely the tip purpose, however a serving to hand alongside the way in which for each household affected.

I wished to share my sister’s story within the hope that it could assist different households going via this, and to encourage folks to think about donating to assist fund analysis.  

Harriet lives on in all of us in the way in which we method our lives and within the methods we attempt to have a good time the ordinariness of life, understanding that we gained’t be round without end. We maintain these we love tight, in the way in which she taught us greatest, and keep in mind the phrase she at all times used to say: ‘We’re right here for a superb time, not a very long time’.  

Harriet documented her experiences on Instagram @ThatCancerLife. It’s also possible to donate to The Harriet Downing Fund here.  For extra info go to: https://www.thebraintumourcharity.org/ 

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