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Journey’s End

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”

 

 

 

December Update

The best way to describe the past month is an up hill slog. Its been a case of head down, blinkers on and just focusing on getting through each day. Luckily things have improved slightly as Im not sure how long I could have carried that on. I couldn’t have started the last round of chemo soon enough! The pain leading up to starting the chemo was overwhelming and I was so weak I struggled to hold my head up sometimes. Which meant travelling up to UCLH in central London was a challenge. However I am so much happier with my care being at UCLH rather than at Southampton. My new oncologist wanted a baseline scan before I started this newest course of chemo. It revealed that the cancer had grown a bit more since my last scan just 2 weeks before. This was not a surprise because I could feel it growing in me. It was a nasty combination of intense pain, increasing pressure and nausea all building up in my abdomen. Not a nice feeling to live with and it had me bent over for days before I got on top of it with medication. The oncologist said their was also a new bit jutting off my liver and this could be what was causing a really intense stabbing pain under my bottom right rib. Unfortunately thats put a stop to lying on my front and any deep breathing. In fact laughing, coughing, yawning, deep breathing and hiccuping are all no no’s if I want to avoid a stabbing pain in my side.Continue Reading

November Update Continued..

First things first I just want to thank everyone for the kind messages of support. Its very humbling and heartwarming to know I have the support of so many people. It would be mean to not update you after my last post. My folks and I visited UCLH yesterday and left feeling better about this situation than we did before. Firstly its a great hospital and the Macmillan Cancer Centre is very clean, modern and calming. Everything a hospital should be. It also provides care just for cancer patients, so its quiet. We checked into a hotel the night before and met a few mates for dinner. I then spent the evening looking up at tall buildings and shiny stuff. Annoyingly I had no appetite and felt restless so walking around was a welcome distraction. I always look forward to all the different foodie places when visiting usually.Continue Reading

November Update

Last week I escaped to a cottage in Cornwall for a few days of relaxing with my family. It was great to get away before my scan (which was last Thursday). I was suppose to have a scan 3 weeks earlier but for some reason the Dr decided not to. However, I didn’t get told about this until the last minute so I had psyched myself up for the scan. All that anxiety (or scanxiety as people call it) didn’t dissipate and the next 3 weeks, leading up to last Thursday, were tough.Continue Reading

September Update

There isn’t much to update you on but its been exactly a year since I had my shoulder replaced to remove the primary tumour and its also cancer awareness month so I thought it would be a poignant time to write something. I was suppose to have another 5 day course of chemo this week but my blood cell counts have not recovered enough from the last round, so its been delayed a week. Two steps forwards and one step back…Not the end of the world but I cant help be a little annoyed with this because I want to crack on and keep hammering the cancer, however on the plus side I’ve felt good for another week. Continue Reading

A Minor Set Back

Its been a while since my last post as I have been keeping busy, and I’ve also had an eventful couple of weeks….I think I start every post off with that line. I didn’t want to post anything until I had my results which I got yesterday. It definitely was not the news I wanted. The tumours on my lungs, liver and pancreas have started to grow again. I didn’t know what to say. I was so angry about it after all I have been doing and everything has been looking up. However I’m used to this by now and got over it pretty fast. Its just a minor set back. There is no point holding onto negative emotions, that won’t help, so onwards and upwards. Im starting a new course of chemo on Monday which will hopefully get rid of these little fuckers. The Dr told me it should be similar to the last type of chemo, which I tolerated pretty well. Fingers crossed my hair sticks around. Although its a lot thinner than before, it still makes such a difference having hair. The plan is still to have a check up scan after 2 rounds of chemo and keep going until its gone or we need to change the plan of attack. The two drugs I will be having are Topotecan and Cyclophosphamide and they will be administered daily for 5 days, with 2 weeks recovery in between.

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July Update

I’ve been quiet on the blog front recently as there hasn’t been much to report on. I have a few health and fitness related posts I’ve started but they are waiting to be finished on a rainy day. Make hay while the sun is shining and all that. I am currently on a chemo week and I have one more course planed in 3 weeks. This consists of taking 6 tablets every morning and a short IV drip later in the day for 5 days. Ive been handling it really well but I still feel a bit groggy as it has an accumulated effect, and its been a tough slog this last 18 months. After the next round I have another scan and a decision is made on what direction to take. This is really frustrating and tough to live with. I keep moving forwards and try not to think about the future and just focus more on the present. Easier said than done of course. Continue Reading

June Update- Just Keep Swimming…!

This is just a quick update so I will keep it brief for once. I was supposed to have my scan last Thursday but due to a hospital cock up I had it yesterday and the news was worth waiting for. Everything has shrunk or remained stable! The tumour on my pancreas has shrunk so much it’s not visible on the scan anymore, the one on my liver has also shrunk and the tumours on my lungs have remained the same. I am still a little disheartened and frustrated about the lungs but at the same time I am so happy that everything I am doing is paying off and its moving in the right direction. The good news released so much pressure and I can breathe a lot easier till next time. Its satisfying and extremely relieving knowing all the energy I am putting into fighting this and everything I am doing is having a positive effect.Continue Reading

May Update

Its been a little while since my last update. In this case no news is good news. Ive been keeping myself busy between rounds and enjoying feeling somewhat myself again. Im a list person so I have finally been tackling the giant to do list thats been building up for over a year. Ive also been ticking off a few places I’ve always wanted to visit. The most recent being Rome! A great place but definitely not a relaxing weekend away with all the crowds, plus there is so much to see! Now, I’m not a religious person but I think we were the only people to ever walk through the Sistine Chapel and not realise that was it until we were at the exit and looked at the secret photos I took, due to the strict security. I don’t think I can get into trouble for admitting that here… After countless rooms with the most amazingly painted ceilings it was just another room with a painted ceiling and shoulder to shoulder crowds. St Peters and the Coliseum were definitely my favourite spots. It was a mission trying to keep to my diet as it seems all Italians somehow survive on a diet of pizza, pasta and gelato! But we found a quality little place called Ginger. Check them out if you’re ever there. They do fresh food to please everyone, plus loads of organic stuff. My mum is a Saint for putting up with me whilst I was hungry and walking miles through the hot and busy streets, following google maps on my phone looking for heathy restaurants. One of my flaws is I get seriously hangry. The Italian border control was very ‘relaxed’ and it was the first place that took my word for it that it was my shoulder setting off the alarms and not a bomb, and then just gave me the nod through the gate.

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Some Good News

As you have probably guessed from the title of this post I had some good news after this weeks CT scan. The tumours in my lungs have not changed but the ‘abnormalities’ (as they frustratingly still call them) in my liver and pancreas have shrunk. My oncologist even struggled to find the shadow on my pancreas when I asked to see the scan. I would be lying if I said I wasn’t frustrated and concerned the tumour on my lungs hasn’t also reduced but looking at the positives, the little fucker has stopped growing and the chemo/everything I am doing has done this. After all I have been through, everything Im doing to fight this and after being knocked down to rock bottom recently, its a well needed boost for my morale. I can actually feel the pressure temporarily release when I get good news. Its another up in this rollercoaster. Lets hope it keeps on going up and stops while at the top! Its been a great week and its the first time I’ve had that Friday feeling in well over a year. Ive had a smile on my face since being told the news yesterday.

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Blog by Julian Quick