Friday, 8 April 2016

An Update and An Invite

Caroline Reyes-Loughrey Photography
It's been three months since the failed Nivolumab clinical trial when I first came back for a check up at the Chelsea and Westminster Hospital. I immediately notice the change of staff at the ward, I used to know everyone there. I got a little disoriented but then I finally see someone I recognise and I look for my Oncologist. She gives me a hug and tells me I'm in the wrong place. I have forgotten I'm now supposed to go to the outpatients department instead. Well, this isn't the worse of these episodes, one time I came for a scan at the right time, but a day earlier, such are the perils of chemo brain, a constant struggle to be on track and in sync with the healthy world. 
I've checked myself in on the computerised reception system and from the hallway I see my Oncologist waving, I apologised for my tardiness, told him I'd been at the chemo ward first. After the usual medical routine, we talked about what to expect now that I'm not having treatment. In a gist he said I will be increasingly dependent on people to assist or do things for me. During the worst part of the cancer, hospital transport was the only way I could and was allowed to get around. I needed a wheelchair when I'm out and I had to be on oxygen 24/7, even in the bath. My immune system was non existent so even taxis are not encouraged. Like that boy in a plastic bubble, at that point, I won't be able to handle a virus or bacteria. I have solved many Sudoku puzzles whilst waiting for transport, they get really busy, glad I'm over that. So, I proudly announce that I used the London Underground and a bus to get there. He was pleased, the nurse suggested I wear masks if I do that. He then said maybe we should do an X-ray, just to look. All that radiation, just to look, I'm not a TV show, I declined saying they're not giving me treatment, so they're not allowed to look in there. I booked my next appointment and ended the meeting. It was a crisp and sunny winter day in London so I decided to visit my favourite shops along Fulham Road.
I love the feel of the winter sun on my face. Two places I go to, that quaint French market that sells produce, good seafood, French tapas, fresh olives, etc, and of course French groceries, I love that place. Then there's this Italian shop that sells cooked Italian food and produce and groceries from Italy, I always stop by there too when I'm well enough. One last stop is the juice man in South Kensington, I ask him to make a fresh liter of pure green juice whenever I come around. This was four months ago, things have shifted since.
As I walk into his office, my Oncologist gestures for me to take a seat then says, "approaching three years, trouble!" , that's the moniker he has given me. He was all smiles and looking at me in awe, why, because I'm doing so much better than predicted, though I admit I did put a little effort that day to look good and to surprise them and to prove to myself that I still look normal. He probably told me I'm amazing about 10 times during the meeting, funny. I may still look well but I have had to modify and pace a lot since our last check up. I'm getting increasingly breathless and I get on my oxygen most nights, sometimes overnight. I walk less, but I can still get around on my own. The healing protocols I designed for myself are hopefully keeping the Cancer at bay and myself stable. Cancer is a full time job, it occupies my whole day and night. When you're dealing with Cancer, you and the people around you need to be ready to compromise with you at any given time, you can't predict how your day is going to play out, you just wish you'll be good enough for what you planned. I'm still struggling with the side effects of chemo, mainly brain fog - chemo brain. The past two months were specifically challenging which is why my last post was in February. The side effect from the Nivolumab drug, pain and general weakness on my upper arms, that's more pronounced now, though not debilitating yet, I just can't carry much which is probably a good thing because then I can't shop too much. Sometimes putting clothes on can be a pain too, but like anything else, modify. My Oncologist tends to credit my buoyancy to a possible late reaction from Nivolumab, but I just don't think so. We arranged a CT scan on the 20th of April, this time I agreed. 
I have a list of activities I do for days when I'm breathless or lack energy but I just can't do nothing, unless in meditation and tapping. I'm finally caught up with my Photography, uploaded new images on the website and even launched a new Spring Gallery - Cherry Blossoms, that's me slowing down. My photography website is my life's tapestry, I was in every single one of those photos obviously. I realise it will be quite a task for me now to be lugging equipment and heavy cameras around, but I can't give this up, so now I will focus on photography I can do from home, a change in subject - Food, which I have some photo stock of, and still life, florals maybe, like the new series. This art form just makes me so happy, I will continue doing it. This is an invite to visit the site, you can comment on the images if you use your facebook login. I have everything from travel scenes, animals, florals, black and white, even street art. I would appreciate help promoting the site, would be really a boost to my efforts, Photography is a big part of who I am. A sad part of the journey is having to give up my then Photography, Cooking, and Travel websites, having been given a chance to do it again even on a smaller scale, is such bliss. Thank you. 
It's been almost three years since diagnosis, a really really long three years, but my resilience has kept me steadfast and standing. I don't function 100% but I'm living.
Thank you to everyone who continues to pray for me, and everyone who wishes me well. Take care. 

At Any Given Moment, You Have The Power To Say This Is NOT How The Story Is Going To End

Pittenweem Fishing Village Scotland in Black and White by Caroline Reyes-Loughrey

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