Debra Allen
In memory of Victoria Emma Caldecourt
Fundraising for Sarcoma UK
Story
Victoria Emma Caldecourt, her journey and the reason for this page, told through the memories of the people who loved her most….
The reason for this just giving page, is to raise money for Sarcoma UK, to help them provide education and research to fight the never-ending fight against this horrific disease.
There are many types of Sarcomas not all are cancerous, unfortunately for Victoria, she was eventually diagnosed with Leiomyosarcoma, a rare type of malignant cancerous tumors that arise from soft muscle tissue.
The inside of our bodies, all our vital organs are covered with soft tissue. Doctors who were looking after Victoria, had over 90 years’ experience between them they had only ever seen two cases of the cancer that was present in Victoria, both in women over 55 but not as severe as Victoria.
Much more information can be found on-line.
To respect Victoria’s wishes, her funeral will be held at Weeley Crematorium, Colchester Road, Weeley, CO16 9JP, on the 14th
September at 11:45.
Please no cards, no flowers and NO BLACK.
If you planned to buy flowers or a card, please leave a message and a donation on this just giving page, and all will go to support Sarcoma UK.
Victoria’s story….
We realise that you all have busy lives and may not have the
time to read all that’s written below, so to summarise the story that follows, Victoria suffered greatly on and off for 5 years with this horrific disease, the last eight months being far worse that what had gone before, many issues arose throughout this time, HRT to control the growth of the leiomyomatosis, a full hysterectomy, then the cancer, radiation damage, chemotherapy, bowel failure, Victoria would vomit and excrete faeces with her urine, she would suffer from water retention causing her legs and lower back to swell to twice
their original size, back pain, kidney failure, causing her to writhe in pain, she couldn’t walk, she was unable to eat, and suffered from severe sleep deprivation, at the worst she had six tubes in her tiny body, in her back her chest, tummy and leg.
To compound the physical pain and suffering an overstretched NHS, covered by overworked underpaid nurses, compounded by the
impact of Covid-19, an underfunded NHS that is not fully fit for purpose, and NHS that does not communicate between departments, overstretched Nurses who do not have the time to read their patient notes, countless times she was asked if she was pregnant, a
lot of the support that she needed was not there, this all added to stress that could have been avoided, the government needs to act.
The full story - Our first memory of anything wrong came in the July of 2014, Victoria collapsed in agony, writhing on the floor in extreme pain, she was rushed to hospital and was found to have fibroids that had wrapped themselves around her ovaries, apparently very rare that they do this, this we will find to be a common theme through the next 6 years, the words uncommon and very rare occur throughout.
Victoria writhing in pain was to become something we and especially Daniel would witness on many occasions.
2015, after one of what would be many many trips to
hospitals in London and one of several failings by the NHS, or rather the pressure and underfunding of the hard-working staff and the NHS as an institution.
She was told by a nurse on the phone the day after a CT scan, that they had seen something and that she needed to come in to see the doctor, and recommended that she must bring a close member of the family with her, Victoria who was on her own at this moment, broke down in uncontrollable tears, fearing at that time her worst
nightmare.
Daniel in Milton Keynes, Dad, in south east London and her
mum at home in Clacton all rushing to meet with her at Homerton Hospital, Denise by train and tube. We met Dan and Victoria outside the hospital all of us in tears. Finally, we met with the doctor, who was somewhat bemused by the emotion in the room and the
panic in our voices, the appointment was feedback on her recent tests, the nurse had got it wrong, at this point there was no news of cancer.
Two more occasions we experienced similar, another she was
told there were lots of dark spots on her lungs, she said “lots, how many”? “1,2, 3, 4, 5, 6” as he counted the spots from the picture in front of him, many" he said, followed by I will call you back tomorrow after speaking with the surgeon. The call came the following day, with an apology, they were in fact blood vessels, he also added an apology if he had ruined her nights sleep!
One more, she was called by the gastro team who read bad
news from the results of her last tests results or what should have been her last test results, it took Victoria to point out that the notes he was reading were in fact from the test some three months prior, he just didn’t check the date….
In August 2017 a 6cm tumour showed up on a scan that was within her leiomyomatosis. because leiomyomatosis was classed as so rare, the decision was made that this was probably something to do with the existing condition and they sent her away for three months to see if it would grow or not. Then in October 2017, the 6cm tumour
had then grown to 17cm and Victoria was diagnosed with
Leiomyosarcoma, a cancer so malignant and aggressive, statistics said that she would pass within 5 years. October 19th the tumour was removed, followed by a full hysterectomy on 30th November to
remove any other potential cancer sites. Later a 5cm cancer tumour was found in her womb. At the age of 32, Victoria and Daniels dreams of having a family taken from them.
January 2018, Daniel took Victoria to the west coast of
America on a trip from San Diego to San Francisco, after a fraught start to the holiday, “they lost Victoria’s luggage”, once it was returned, they had a fantastic time, and returned home not knowing what was about to change their lives forever, it all sounds wonderful but it took a lot of courage for her to make that trip after all that she had been through up to this point, with what was to come she was glad she did.
Following the trauma of the hysterectomy, and returning from
America, Victoria endured 6 weeks of pelvic radiation treatment between Feb and April 2018, we all look back, including Victoria, and with hindsight maybe should have chosen a different path, but she was such a fighter, 5 foot 2 inches, under 7 stone of pure courage…
25th August 2018, Daniel proposed to Victoria at
a special picnic for two on the beach at Bournemouth, three times they attempted to get married each time defeated. First time because Victoria had to have emergency Chemotherapy to which she lost her hair and then the second and third time by Covid lock downs…
Unbeknown to us all the radiation treatment was to cause
more problems than the cancer. Initially the removal of the cancerous organs showed that there was a 2mm clearance and all had been removed.
Radiation however had screwed up her bowel, leaving her
unable to eat for 5 months, she ended up with a tube to feed her (TPN) this gave her the nutrients and all the essentials that she needed to stay alive. This did not satisfy the craving for food, and the hunger pangs she would experience. She stuck to her regime with courage and dedication, undergoing oxygen therapy every day for 8 weeks to help aide recovery of her bowel, that Christmas (2018).
Victoria and Hannah, had bought Dad a dream holiday for the three of us a trip to Hong Kong for his 60th, we didn’t know how we would manage it, but Victoria was determined it would go ahead. She organised everything, all her TPN and saline arrived at the airport, boxes and boxes, she booked all the restaurants, day trips and hotels, including a trip to Macau, and Disney Land, a trip of a lifetime with my two daughters, my two best friends which will last
in our memories forever.
She had a tube fitted in her tummy, to enable her to eat a
little as she was now a little stronger, which worked Ok for a short while. By the time we reached the end, she had two tubes one to administer TPN and the other vitamins, they could also be used to take blood, she had tubes attached to each of her kidneys, as they would not drain properly, she also had a line in her leg to administer the drugs she needed on a daily basis.
During July 2019, traveling business class courtesy of
Daniel she travelled to see her uncle, aunt and cousins in the US, this was the last time they would see their cousin.
1st August, was she told me the best she had felt in a very long time, she had her TPN tube removed so that she could swim in the
sea on a planned holiday to Sorrento, she had a wonderful holiday, this was to be the last time she was truly happy.
By the time we had reached 30th August 2019 the cancer had returned, and now the next stage chemotherapy, we were all very scared at this point none more so that Victoria herself. Every week attending UCHL on the Euston Road, apart from all the heartache of the treatment and what it does to the body, let me tell you something that no one would think.
Her chemotherapy started on the 16th September
2019, one session every three weeks, and due to finish before Christmas, her favorite time of the year.
Again, yet another setback, the chemotherapy she was on was
not working, the doctors put her on a more powerful drug, upped the dosage and started the cycle again, meaning that now it would not be completed until February 2020.
Victoria was so very poorly, nauseous (often vomiting into a
bowl in the car) she’s faint and weak, UCHL is just 26 miles door to door, and the appointments are usually 8.00 am. To get there for 8.00 you have to leave at 6:00 am and sometimes then you were late, if the appointment was later let’s say 10:00am you may still not make it on time if you left at 6:00. There is no way she was fit enough to travel by public transport, at least one train and a crowded tube. There was nowhere to park, which meant dropping Victoria outside the hospital in a wheelchair, to sit outside on her own, whilst searching for a parking space. Then would be the long journey of taking bloods, waiting for appointments and plain old just waiting, all this took a massive toll on her physical and mental wellbeing
On one occasion they put the bag on and forgot to turn it
on, Victoria had been there since 8am, up since 5:30am and was told we’ve run out of time (they forgot to turn on the bag) come back tomorrow.
By the time she got home sometimes it would be 10:00pm, the
whole thing was an absolute nightmare.
June 2020, Daniel’s birthday, Victoria arranged a luxury
house on the beach at Camber Sands for that special occasion.
July 2020 Daniel and Victoria with a break in Covid - 19
restrictions went to Lourdes to bathe in the water that flows from the spring, looking for that miracle.
They purchased a pizza oven, she made a terrific pizza, on the 8th July they were off to Croatia, making the most of every moment.
In March 2020, she managed a trip home to Clacton, and again
in June with Hannah to help Debra nurse their dad back to health, through everything she endured she still had the capacity to put others first in her thoughts this was important as ever.
Christmas 2020, her favourite time of the year, was to be her last. This day turned out not as we had hoped, Victoria was so poorly and was unable to stay, so Daniel took her back home.
Leaving 2020, into 2021 these are the darkest times for
Victoria and for us as a family as she will deteriorate with every passing month, week and day as time moves on to August 2021.
Dark times indeed, but with Victoria’s courage and zest for life shining through, endeavoring to make the most of what time she had left,
setting an example to all of us all.
As the days turned into weeks and the weeks into months, her
body became weaker and weaker, her mind completely broken and shattered, but her heart remained strong, she tried many things to make her better, and make things better, from yoga to faith healers to Buddhism, anything to ease her pain, mental stress and anxiety.
January 2021, Victoria, learned that she would be an Auntie,
news that both made her happy for Hannah and saddened her to think that she would not ever see her nephew.
May 1st although very poorly Victoria organised a cottage break for all of the family in Kent, sharing as much time with us all together as she could.
June 3rd, was Dan’s 40 birthday, any other time it would have been a special day, Victoria wanted to keep it that way, all the family gathered, she had organised everything made every effort to prepare the food and the drink, the sun shone and the day went well, it was a big surprise for Dan who had expected nothing, another emotional day.
We all spoke to Victoria during the months to August, all
subjects including her impending passing, leaving no subject untouched, even during this she cared about everybody else ensuring they we would be ready for a life without her, she told of us wants she wants us to do, Victoria was full of like spreading her magic, just like her favourite Disney character “Tinkerbell” sprinkling fairy dust wherever she went.
The end was hard to bear, her nephew Stanley, was born on August 10th, Victoria met him on the 13th, she knew who he was, stroked his head, his arms and run her fingers across his face, taking in every part of him, whispered she loved him now and forever, and to always
know she would be looking out for him.’ It was both sad and happy for all of us, our family all together.
By this time, Victoria was unable to walk, her bed was in her living room, she had to be picked up and placed on a commode, she had to be turned each hour in her bed to lessen the pain from bed sores, and winced with pain each time, the pain she suffered if you caught, or she laid on one of her kidney tubes (these tubes went directly into her kidneys) was unbearable, she was unable to have food via her TPN, and had not eaten for 18 days.
During this time as the tumours grew, they began to press
against other organs in her frail body, her bladder became blocked, and her kidneys began to fail, many more trips back and forth to the hospital, now at Harlow. On one emergency call, she was just two days away from death if she did not have her kidney tubes fitted, something that she was reluctant to do, but did so all the same. This will prove to be very painful adding more stress and suffering,
The next thing Victoria had to endure was the collapse of
her colon, resulting in passing faeces, blood and urine through her vagina, mixed with the acid from her body, she was in unbearable pain causing her to scream out in agony.
She was far from being the champagne party going girl who
was so full of life, kind, thoughtful and beautiful both inside and out. There were many who wanted to visit her in the last days, Victoria wanted all to remember her as she was, and not in her last days, the change was truly shocking and you would not have wanted that to be your last memory.
By the Friday Evening (13th) she had deteriorated, and again on Saturday (14th) deteriorated so far that she was taken to the St Clare Hospice in Harlow.
We as a family all stayed with her until the very end, I am
sure that she waited until we were all there by her side, Daniel, Hannah, Stanley, Elliot, Debra, Mum and Dad, before drawing her final breathe, she had been at peace and pain free for the last three days, with her family, under the wonderful care of the nurses and doctors at the hospice, we will all owe them a debt of thanks for what they did for her.
That’s Victoria’s story, if you have made it to the end, thanks for reading, she had a wonderful life, just to short and a very tragic end.
If you were thinking of buying a card or flowers please donate that money to this site, it will help in the fight against this terrible
disease, and its what Victoria wanted.
Yours sincerely
Victoria’s Family
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