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.The scan results showed that the disease has very frustratingly continued to grow. The tumours in my liver and pancreas have doubled in size. It was horrible sat their as the Dr scrolled through cross sections of my body and big dark shadows gradually appeared in my organs on the screen. I sat their looking at it thinking they must have made a mistake and that it couldn’t be true. A huge amount of pressure was on this result as the list of options is running out. Ewings Sarcoma is so rare not much research has been done so treatment is a bit trial and error. Getting bad news doesn’t get any easier and neither does writing about it or telling people. Thats what makes rit feel real.
I’ve been referred to University College London Hospital (UCLH), which I am very happy about. They are doing cutting edge research and trials. I have been really disappointed with Southampton hospital. I despise that place. I’ve had a lot of horrible experiences there over the past 22 months and I will be very happy to never see it again. Its dirty, cigarette smokers everywhere, in a horrible location and I’ve had to constantly chase them up. Not what a cancer patient needs. Far too often they made a very shit experience even harder for me. But, they always apologise so its ok….. The final straw for me was spending my last day in Cornwall chasing the hospital because they forgot to book my scan, at least they’re consistent.
I don’t know much about the trial I’ll be joining but I will find out more next Monday when I meet my new oncologist and the rest of the team at UCLH. Its a new chemo drug used alongside a drug I’ve already had called Irinotecan, I think. The only down side to this is the increased travel distance but i’ll be able to make the most of visiting London and see some friends I don’t get to see enough.
Recently I’ve had a dry cough, headaches and I’ve been riddled with pains in my spine, guts, chest and neck. Leading up to last Thursdays scan the area around my liver was very inflamed and painful. After the scan the pain went through the roof. Theres been times I’ve been doubled over unable to breath properly. I haven’t got a clue if they are related or just caused by stress. I’m on some strong pain killers and they do the job if I take them regularly. Its so hard not to think every nasty feeling I get is something sinister. I’m so tense at the moment I keep having to tell myself to relax my shoulders. Its key to avoid negative feelings as they suppress the immune system, however facing cancer is so bloody stressful and I’m under a huge amount of pressure. I love my life and I would quite like to keep it!
Its really difficult to stay positive when so many hurdles keep getting thrown in my way. Its ridiculous but I feel a bit stupid being positive when I keep getting dealt shit but this is the time when it matters most. Ive been putting off writing this for days as its a difficult one to write and not exactly fun. I needed the best part of a week to process the news. Im exhausted and so tired of all this but the longer I go the more advancements are made. The harder it gets the more I want to dig my teeth in and beat this fucker.
Im trying to adapt a more grateful lifestyle. Its easy to slip into a downward cycle in this situation but I’m trying to focus on the small things that make me happy each day, and consciously be more grateful for what I have, rather than what I might not have. This is the key to staying positive in this situation. A’int nothing bigger than the little things.
Right then thats enough shit news..I will end on something positive. A friend of mine that works for a PR company has been working on a campaign to help people talk more openly about cancer, improve the way people talk about it and also to remove the stigma. So many people are not sure what to say and some people even avoid the person facing cancer all together, which is not what we need. The campaign is called Lets Speak Cancer and the company responsible for it is AXA PPP, who also happen to be my insurance company. My life is dominated by cancer related things so its been great to channel that into something positive. I did some filming for the campaign last week with an online news channel called TRT. They kindly said I was very natural but it felt so unnatural. It was really difficult to keep a straight face when answering such personal questions on the beach, whilst my dog humped a tiny fluffy dog with its elderly owners in tow, just behind the camera. The campaign will be online. No doubt ill post something when it launches.
I feel helpless and really frustrated sat waiting at home with the disease advancing while I’m in limbo between hospitals. We have expressed our concerns but they don’t seem to be worried. The plan moving forward is to meet with the team at UCLH next week and find out more about the trial I will be on. We are still unsure when its starting but we have been assured its very soon. If I need to be, I can be put on a maintenance chemo to tide me over till the trial starts. I hope this post doesn’t make me sounds negative. Its obviously not all shits and giggles, and its tough to write about it sometimes without sounding like I’m just moaning. But I think its important to show the honest truth behind dealing with cancer.
2 Comments
Hi Jules I reckon once you’ve beaten this thing you’ve got a great future ahead of you as a writer Let’s hope going forward there’s more giggles than shit in store for you
See you about soon
Regards
Ken
November 19, 2016 at 12:46 pmHi Julian. There are so many people wondering how your doing ,me for one ,so it was great to read your post ,it is so hard to know what to say to you ,.but you must take on board that you are an inspiration,of course it’s not any of us having to go through what you are dealing with ,.but if i do have to confront this godforsaken disease ..I will take on board the strength you show & take courage from it .
UCLH is fast approaching al lthe luck in the world with it ..Bye for now .
November 19, 2016 at 9:34 pmMary scholz X