This post is written by a heartbroken mum, Diane, as we have lost our beloved Julian.
It seems only right to document his last days in the same spirit as his blog has been written, ie very frankly, although there were some events almost too painful to recall, like having to go to Dorset County Hospital two days after the terminal diagnosis, where a Dr asked Julian if he had signed an end of life consent form (it was the first we had heard of it) ”you don’t want to be resuscitated do you, they break your ribs and everything doing that”. Charming. Fortunately such insensitivity was far from typical.
Looking back at Julians blog and photos, one relives the horror of the past two years, but there was never a shred of self-pity and he was always more concerned at the effect it was having on his loved ones. If he could have written this himself, no doubt he would have found a way to include some humour too.
I do wish I could offer some message of hope in the fight against Ewing’s Sarcoma, a rare and aggressive cancer which usually affects children and young adults, especially males, and often sports people who, like Julian, assume the discomfort to be a sports injury, delaying the early diagnosis that could prevent the spread of the disease.
Due to the relatively low number of people affected, there are limited resources devoted to research into the disease. There are no treatments specifically for Ewing’s, any treatments used have been designed for other cancers. There are glimmers of hope coming from the USA where there are phase 1 trials into at least two treatments specifically designed to treat Ewing’s as well as research into gene therapy and immunotherapy, but there is a long way to go and sadly, treatments which show promise in the lab or on mice, often do not work well when eventually tried on humans.
When Julian was diagnosed in January 2015 we knew it was very serious but in December that year, after successive rounds of extremely toxic chemotherapy, radiotherapy and radical surgery, we were full of optimism as it appeared the battle was won, at least for the present, and the Fightback to Fitness could begin.
A terrible characteristic of Ewings is that it often metastasises (spreads to other parts of the body) even more readily than most cancers, but we were shocked to learn that it had done so, or that suspected mets already existing had not responded to treatment, as soon as January 2016.
We knew from Dr. Google that the prognosis for patients with metastases was “grim” and survival rates for a year from diagnosis were just 5%.
It is typical of Julian that not only did he succeed in being among the 5% but he did it with such grace. More gruelling rounds of chemo followed, in Southampton and later at University College London Hospital, and he never gave up trying to help himself by staying physically and mentally as strong as possible with diet, meditation, yoga, complementary medicine and by just trying to get on with life. Despite feeling pretty rough, he embarked on projects around the home, completely redesigning the garden then building some garden furniture and an outside gym. He refused to be inconvenienced by only having one good arm, further surgery was required on the bad arm but that would have required a break from chemo which was not possible.
He became involved in Trekstock, an organisation which brings together young people suffering from cancer for mutual support and events.
Axa healthcare approached him to get involved with a media campaign to help people talk about cancer, which he did.
He also made a video for a digital tv channel about dealing with cancer, which can be seen on Youtube. He looked so handsome being interviewed on the beach at Canford Cliffs but the afternoon was long and it started to get quite cool. He had skipped lunch and there was nowhere handy to get some food, anything let alone his usual healthy grub. By the time we got back to the car he was so poorly he could not drive and I had to drive us home. Its a great video and might help some people, I am so proud he did it, and on the day he just wouldn’t let the cancer stop him.
What turned out to be Julian’s final appointment at University College London Hospital was on Friday 13th January, to discuss the results of his latest scan, but hey we’re not superstitious. The oncologist brought the appointment forward to the 11th. “That can’t mean good news” said Julian. Ever the optimist, I said perhaps a place had come available on the trial he had hoped to get on but which had been fully subscribed, or maybe the doctor was rescheduling due to the threatened train strike on the Friday.
When we sat down with Dr Strauss we soon realised the gravity of the situation. She showed us the scans and Julian’s liver looked bad, no wonder he was finding walking or even standing up so painful. The chemo clearly wasn’t working and she said he was too ill to have the final drug combination that he had not yet tried.
Julian asked how long he had… “Weeks or short months” she said sadly. I wouldn’t want her job.
There were no tears or histrionics, Julian, dad Des and I were more concerned about collecting the car and getting out of London before the rush hour. Looking back, that seems strange after receiving such news but two years of fighting cancer alters what is “normal” plus I think we were all in shock.
I assumed Julian would have at least 6-8 weeks and we would talk about it in due course, but sadly his condition deteriorated quite rapidly.
The next day, Thursday 12th January, a Weldmar Hospice community nurse came to the house to meet Julian and draw up a care plan but by the end of the following week, after yet another night of agonising pain, despite morphine, she suggested it might be best to be admitted to the Hospice to get the pain under control. Even then we thought he might yet return home to end his days there, but it was not to be.
Julian’s passing was made bearable for him and us, by the wonderful people at the Hospice in Dorchester. It is a beautiful place but walking in there with Julian, for the first time since the whole nightmare began I had an overwhelming rush of emotion. I controlled it of course, things were bad enough without a hysterical mum.
From then on, the wonderful team were constantly on hand to administer medication as and when required, as well as tea and sympathy. They provide a service nobody else can. There are no treatments offered, palliative care is their thing and they are so expert at it, along with the most fantastic holistic support not just for the patient but for friends and family, who were all welcome to visit any time of the night or day, including Archie, Julian’s adorable French Bulldog.
Julian’s sister Amelia has set up a collection for Weldmar Hospicecare Trust in Julian’s memory on justgiving.com
One of the characteristics of Ewing’s Sarcoma is that it often causes the worst pain at night, and nobody knows why. Increasing medication was administered around the clock but after another really bad night, on Monday 30th January Doctor Paul came in the morning whilst Julian was sleeping, and gently told us the only way to make him comfortable would be to give him doses of painkiller and sedative that would render him unconscious. He was too sleepy to be party to that discussion, partly because of the medication and partly because of the effects of toxins coming from his liver but we knew it had to be done.
That morning, a package arrived at the Hospice. Des and I were taken to an office and told that knowing he was a big rugby fan, some of the nurses had been in touch with the England Rugby Squad who were busy preparing for the forthcoming Six Nations Tournament, to ask if they could do something special for Julian. In fact he had tickets for the England v Italy match on 26th Feb at Twickenham and had been hoping to be well enough to go.
Having established he was a bona fide rugby player and ex-Captain of Weymouth Rugby Club, they sent him a card, a shirt and a ball, all signed by the whole England squad. When Julian opened his eyes briefly, Des showed him the gifts and he smiled and said “that’s amazing” before falling back to sleep. I believe those were his last words, it was certainly the last time we saw that beautiful smile. The medications were increased that day inducing a deep sleep and he passed away in the early hours of the morning 6 days later on Sunday 5th February.
We are so grateful for the great kindness and sympathy, as well as the overwhelming love, affection and respect that has been expressed by so many people who knew Julian from various aspects of his life. The family feel so proud and fortunate to have had had such a brave, funny, inspirational son and brother.
Thank you for reading this post and Julian’s blog, which he enjoyed writing (a talent we had not known he had) and he much appreciated the feedback. I am monitoring his mailbox and social media accounts so if anyone wants to get in touch please do.
Finally, having made us laugh and cry with his eulogy, Will, Julian’s brother summed up our feelings with the following words….
“Since he departed from us the World seems a much darker place, but I can guarantee that it’s still far lighter than if he never arrived”