Tuesday, 24 June 2014

Living with Cancer

I haven't written in a while. I've been busy living with cancer rather than dying of it, which of course is a good thing. That, and then there is this challenge with chemo brain, It has been really foggy up there! but I am keeping focused. I pace myself and I can't do as much as I would like but I'm happy with what I'm able to accomplish. There are times I actually forget I'm sick and I try to do more, until pain and fatigue hits me hard, then I regret pushing myself. Cancer moved in and I have to learn to live with it. Before coming home from my first chemo I was taught how to deal with breathlessness and saving my energy while doing everyday tasks. My bath and kitchen were reconfigured, honestly, the whole house almost, and it's still a work in progress. A chair was fitted into my shower, the layout of the kitchen changed for my convenience, the bedroom rearranged to accommodate my oxygen tanks and concentrator, my bedside table now holds my meds. A list of important numbers plastered right above it. We live in a two level house, the first few months when I was so sick I infrequently came up, we bought a small fridge for the bedroom so I don't have to come up for snacks and water. All my meals were brought down to me.  My daily routine now includes blood thinner injections at 7 pm. My social life consist of visits from district nurses and volunteers from the hospice, they are lovely, I do appreciate the interaction. The kids were apprehensive at first but they eventually joined me at art therapy at the hospice and we all agree it was a worthwhile meaningful time together. My GP made a home visit, I call that a cancer perk. I talk to cancer patients at my house and through forums.When I got a bit stronger I would plan my day well, literally packing things in a small bag like books, toiletries, etc. so I don't waste my energy going up and down the stairs which I barely managed with my crappy lungs. As my health improved, I slowly reintroduced the routine I'm used to like cooking and baking. The kitchen is the heart of my house, I didn't see my kitchen for 3 months and I was missing my meals done my way, taking back my kitchen was symbolic and felt like winning something. It was in a disgusting state, the maid knowing that I'm not strong enough to check there didn't really make an effort to keep it the way it was so I'm still working hard on it but it's becoming my kitchen again. Since I will be cooking with my oxygen on, we had to buy an electric stove or else I could explode! When you've got lung cancer, practical adjustments need to be carried out on all aspects of your life. You look for the tools that would make living with the disease easier. I was chained to that oxygen 24/7 for 8 months, with a wheelchair to complete my gear. Although my trips were mainly to the hospital and the hospice, lugging an oxygen concentrator and finding someone to push my wheelchair required advance planning, everything I do needs to be planned, gone are those impromptu outings. I like watching live theatre and I couldn't do that, my concentrator is too loud, it will ruin the ambiance. I have to always bring a back up tank in case I run out and I can't charge or in case the concentrator malfunctions. When you've got cancer, you're advised to avoid crowds, your immune system is low, you can catch a cold and when you're weak even that can be fatal, so I stayed off and stayed home most of the time. I successfully weaned myself from oxygen, I can breathe on my own now and able to get out more without that big clunk of lung support. I still need my wheelchair but I can walk short distances, like the shop next door, which unfortunately is probably one of the most expensive shops in the world. We shop online a lot pre cancer but since I was stuck at home, everything is done online, our whole Christmas, including dinner, gifts and even wrappers were all planned and bought online, I should seriously think of getting Amazon shares :) Everyday you survive cancer, you feel blessed and grateful. Living with cancer everyday is not easy, managing the physical challenges is one thing, the emotional and mental burden is another story but you still look forward to every single day because each day gives you hope, hey I'm still alive, you say to yourself.

I'm still learning to live with cancer. I suppose when the going gets tough the tough needs to keep going. I have adapted to this new reality, concentrating not on what's missing but what can be used. Like Darwin theorised - we evolve! Resilience, Perseverance, and Faith are virtues I call upon as I find my way into this new world I'm in now. I get good and bad days. I compromise and modify where needed on bad days and I take full advantage of the good days, spending it best with my kids. Cancer changed how I live my life but as long as I'm living with it - I'm all good!