Tuesday, 8 July 2014

The Wig Man


You have got to find ways to humour yourself and have fun, even with Cancer. Although I didn't really lose my hair and can get away without a wig, my hair has thinned out and somehow getting new growth as well, it's starting to look weird. I did plan on having it shaved to thicken it a little bit, get the small wispy hair to catch up, so what better time to do it. I asked the nurses for advice and it turns out I am actually eligible for a free wig, another cancer perk! They organised my meeting with Peter - the Wig Man.
I arranged to meet Peter at the hospital. My daughter tagged along as my "consultant." I had picked two hairstyles previous, one long and one medium length. Mr. Wig Man is a very well mannered, really gentle man. He talks to you like you're a kid, but it's sweet. He brought the long length wig with him in a dark brown colour. He fitted the wig on me and then gave me tips and instructions on how to care for them. I never really had thick hair so it was shocking to see myself with all that hair, hilarious! It felt strange like there's a weird looking object on my head. My daughter liked it, Peter said it suits me, but I just can't put my face and the wig together, like looking at someone else in the mirror. 

I gave it a test run and wore it at dinner in a restaurant. I haven't shaved my hair yet, I wanted to get comfortable with the wig before I commit to losing it all.  At dinner, it felt like everyone was looking at my hair, I know that's just paranoia on my side but it feels like that, plus I was trying to make it lodge into my head better so I kept touching it. It was a windy night, on the walk back the wind moved it out of place, so I just took it off. The vision of us chasing a wig is terrifying and hilarious at the same time, best to avoid it. I'm tiny and it may be that the wig is just too big for my small head or it slips because I still have hair. The wig conundrum will be solved! 

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!

Thursday, 22 May 2014

Chemotherapy

I started chemotherapy at the same time I started cannabis oil, lung cancer don't have markers to check my progress so it is difficult to see which one is working, I kept on the chemo as I feel it could work synergistically with the cannabis. The moment I feel toxic, I will stop chemo.
Alternative cancer treatments were what I was aiming for. I have read scary stories about conventional cancer treatments and how toxic it is. Patients die from the side effects and just the body not being able to take all that poison. But, these cancer cells are aggressive and needs to be stopped from spreading asap, I nearly died in Spain and I will do whatever it takes to keep living. I check in to the hospital for Chemotherapy, August 2013. They needed 2 days to stabilise me with steroids, and then we were ready. The nurse presented me with my very own - chemotherapy book. It will hold the records of my chemotherapy cycles and there is information on the side effects and when to call the hospital or go to A&E.  The goal clearly read "to prolong life and/or improve the quality of life".  There is no cure and it's palliative care I will be getting. As I watch the drip flow through my veins I try to convince myself, this is going to work, they have studied this, they must know what they're doing. I have friends who had cancer, they went on chemo and are now in remission, they didn't have lung cancer but it gives me hope.  I am getting 600mg of Permetrexed and 90 mg of Cisplatin in 4 cycles three weeks apart. How my body reacts to the chemo will be crucial. During one of our discussions, the oncologist's sentence started with "If you make it to the third cycle….." The team was not feeling confident coming into the treatment, for one, I was really weak, and they think I waited too long to get the treatment. What happened in Spain also made my condition worse than it should have been.
Chemotherapy is a type of cancer treatment used to kill cancer cells. The aim of the treatment may be to cure cancer completely, help make other treatments more effective, reduce the risk of the cancer returning, and to relieve symptoms. It is given in tablet form or through an IV which I had. My concern is that chemotherapy does not distinguish the good and bad cells, they just attack them all.
I stayed at the hospital for another eight days, that seems to be my magic number. I was too weak, they needed to keep me in. The hospital made arrangements for my home oxygen to be delivered ahead of my coming home. It was a long week, I slept whenever I can, it was hard as people kept coming in, doctors, medical students, the chaplain, the mobile shop, nurses, support groups. I was on steroids and pain relievers. I was getting moved around the hospital too on my bed, the CT scans, X-rays, ECGs seem endless. When I finally got clearance to go home, I felt relieved. While at the hospital I was still parenting, I would call to check if they've done schoolwork, if they've eaten, one time I ordered them dinner from my phone. I am very hands on, we home school, this new situation is very challenging for my kids too and I feel so guilty. It feels like I'm forcing them to grow up and mature now rather than on their own time, it's unfair. I was still very weak when I got back but I was happy to be home. My husband had to go to Hungary for business but luckily a friend came to stay with us for a week. I don't know what I could have done without her, thank you so very much G. She took care of me and the kids for a full week, even unpacking our luggage from the Spanish trip, training the new help we hired, and just being there for moral support, and to watch that I actually rest and not try to do stuff. I could not even manage the stairs, food had to be brought to me. At this point, we had to hire a full time maid too and a tutor for my daughter. I hardly stay in my room before all this, I was always up on my feet even at home. But, I'm stunned by my own weakness I had no choice but stay in bed. The first week was the worst and I hope that really was the worst of this wretched disease. I was so weak I only managed two full showers in a week. I was in bed most of the time, too weak to even read, the sound of the oxygen concentrator my only reminder that I'm still alive. The next two weeks, I slowly regain my strength but only just. Luckily, my side effects were manageable, my legs hurt, I feel tired, my eyes are teary and blurry, but none of the horrible things I hear like nausea and bleeding, thankfully. The second cycle was a breeze, I was cleared to go back home after chemo but I was still very weak and useless at home. But, at least I can now read and get back on to the University of Google for more research. The third cycle however was a defining moment. I had pleural effusion. A pleural effusion means that there is a build-up of fluid between a lung and the chest wall. The pleura is a thin membrane that lines the inside of the chest wall and covers the lungs. There is normally a tiny amount of fluid between the two layers of pleura. This acts like lubricating oil between the lungs and the chest wall as they move when you breathe. A pleural effusion develops when this fluid builds up and separates the lung from the chest wall. They had to drain this fluid so I can breathe better. A tube was inserted on my back. Let me say that this was more painful than childbirth, seriously. I was moved to a special monitoring ward for patients with advanced lung illnesses. I had gadgets attached to me and a nurse there to watch 24/7. I had that drain on for 24 torturous hours, I couldn't even walk to the toilet, I had to use a bedpan! and even that was excruciating. When I stabilised they moved me to a private room for some much needed sleep. Again, I was confined for 8 days. Things started to get better after the 4th cycle and my scans have shown a reduction in the size of the tumours, hip hip hooray! You can't have too much of this poison so they told me this is the last full cycle and I will now get maintenance chemo which is 600mg of Permetrexed every three weeks. I just had my 10th last week. Making it all the way here was a long, hard, trying, painful process. The cast of characters at the chemo ward constantly change, I don't dare ask what happened to them. I have nothing but adulation for the nursing staff, they are all genuinely sweet and nice and so committed to their work, thank you for looking after me so well and with dignity. 

I was told that chemotherapy will eventually stop working. The next plan is to join a clinical trial for more targeted therapies aimed at controlling my mutation. There is no known cure for my rare exon 20 insertion mutation so this is the only chance I have, or natural treatments which I will be exploring. I am now going for an integrative approach. Wish me luck!

Monday, 12 May 2014

Coming Home

My last night in Malaga and I couldn't sleep. I look back at the eight gruelling days I've been confined, the eight days I fought for my life. The doctors who looked after me had all come to wish me well, one of them gave me a hug and told me I am a miracle. As we drive to the airport, I view and admire the Costa del Sol coastline regretting that I didn't get a chance to take photos or take the kids anywhere educational which I always do when we travel. My brother had rented a big van with panoramic windows, it was a relaxing scenic drive. London is only 2 and a half hours away but travelling with a portable oxygen can be worrying. What if the flight is delayed, what if my oxygen breaks down? It's supposed to last 6 hours with a fully charged battery. I find myself constantly checking its power level and I realise travelling will never be the same again for me and the family. As soon as we landed at Gatwick, the oxygen went off, out of power. We alerted the flight attendants and we were let off first so we can get to the nearest plug to charge, what a scare that was.
Hospital Quiron in Marbella gave me clear instructions. When you get off the flight, check in straight to your hospital.  It was almost 7 pm when we got home, I'm tired, still stressed from the oxygen failure incident, I told my husband we'll go in the morning. I needed to feel the comforts of home even for one night. As soon as I walked into the house my Mom eyes start working "What have you guys done to the house"? I scream as the kids scurry off to their rooms. I was in Spain for 6 weeks, a maid comes in to clean for them but the house was still a disaster. They had left lights and the air-conditioning on, there was left over food out, a lot of snack wrappers and dog food on the floor. I was weak but I noticed all the mess. I would typically get things in order but I knew I had to teach myself to ignore them, that's not important now. Since I got diagnosed I realised I have some basic life skills I still have to teach my kids. You just always think you will be there for them all the time, that gradually these skills will develop and get instilled in them as you go through life together. I panic at the thought of not having time to impart basic skills to my precious children.
The next day I went to see my oncologist and his team. They had warned that we might have waited too late for the chemotherapy to work but hey, here I am ready to try anything to stay alive longer. Seeing my scans from Spain, they were astonished that I made it back. I was in terrible shape. They lost no time in getting me a room, I was going to be there indefinitely.
Photo courtesy of Mary Reyes Photography

Links

Cancer Information, Support, and Research
http://www.cancerresearchuk.org
http://www.icr.ac.uk
http://www.lungevity.com
http://nfcr.org
http://www.macmillan.org.uk
Forums and Blogs
http://www.inspire.com
http://www.cancergrace.org
http://www.zenofmetastasis.blogspot.co.uk
http:www.cancercancerandme.blogspot.co.uk
Alternative Treatments
http://www.cancertutor.com
http://www.yestolife.org.uk
http://www.canceractive.com
http://www.mayoclinic.org
http://www.endalldisease.com
http://www.theweedblog.com
Cannabis
http://www.cureyourowncancer.org
http://www.phoenixtears.ca
http://www.newcure.org
http://www.medicalmarijuanablog.com
http://www.naturalcures.org
Diet and Nutrition
http://www.theearthdiet.org
http://www.kriscarr.com
Meditation, Mind, Body Connections
http://www.brucelipton.com 
http://www.mindfulnesscds.com/
http://www.psychegnosis.com
Hyperbaric Oxygen
http://www.msaction.org.uk

Tuesday, 29 April 2014

Cannabis Oil

If there is one supplement that I cannot do without, it is Cannabis oil. This is my holy grail. My most potent force against cancer cells. I can't say I have achieved NED (no evidence of disease, equivalent to a state of remission for other cancers) but I know for sure there is hope, and it's because of cannabis. Unfortunately it's got a bad wrap, a bad stigma attached to it. People are missing out on this gift from nature because they refuse to learn the truth or they believe in hearsay without finding out for themselves. When you trace the history of cannabis, you will know how good it is for so many things, all parts of the plant can be used for something. You will get mad that this is not being made available to us now as it was in the past. I was skeptical too at first. I didn't trust the thing till two weeks of taking it, I was always vigilant when I ingest it, and I make sure my husband was close by in case I react badly. Having come from Vancouver British Columbia, I have been exposed to marijuana culture, I didn't even take it recreationally back then, but I was made aware of the benefits. I was more interested with the beautiful fabrics from the plant, and the bath products made from Hemp. When we went to Amsterdam, we went to the Hemp Museum with the kids. Little did I know I was the one to benefit most from all this exposure. Had I not been privileged to see all this the way I did in the past, it would probably be difficult for me to avail or consider taking this wonder cure. When I went for treatment in Spain, I did not have access to cannabis and I got weak, I couldn't sleep. Cannabis relaxes me and makes me sleep which is so essential in healing.
To fully appreciate this miraculous plant, we need to go back at the time when cannabis was main stream, when it was used and regarded as medicine and raw material for so many things. Watch this.

What is Cannabis Oil?
Cannabis Oil is a thick, sticky resinous substance made up of cannabinoids, such as cbd and thc that is extracted from the cannabis plant. This is done by separating the resins from the cannabis flowers through a solvent extraction process. Strains used are indica sativa or cannabis indica. Cannabis Oil is also known as the Rick Simpson Oil (RSO), marijuana oil, hash oil, full extract cannabis oil (feco).
Cannabis Oil is the most potent of three main cannabis products which are the cannabis flower (marijuana), the resin (hashish), and oil. Cannabis oil is the most concentrated and therefore most potent.
Cannabis Oil can be ingested orally, vaporized into the lungs, or applied topically. It's been used for conditions such as diabetes, fibromyalgia, cancer, and just so much more.
Chemotherapy targets all cells, healthy and not, that's where cannabis oil is different, it only targets
the bad cells and that's why it is so safe. So how does it work on cancer? Watch this.
Dosage
I started with oil the size of a grain of rice a day for a week. I haven't taken any recreational substance in the past, I don't smoke. So that little bit of oil hit me fast. You have to build up your tolerance to the substance. I tried to up my dose too quickly and I threw up.
For most people it will take about 60 grams to kill the cancer and on average will take about 90 days. Build up your intake to 1 gram a day.
The main side effect of cannabis oil is sleepiness which is a good thing for your healing. I take a smaller dose during the day and more before bedtime. It gives you a "high" and affects you mental alertness, but it is relaxing which is what I haven't been able to achieve for years. Cannabis may also lower your blood pressure. When the oil starts kicking in, it may be scary for the first timer, but don't fight it, just relax, go with the flow and sleep. Cannabis is completely safe.
Making Your Oil
Here's a link to detailed instructions on how to make your own oil.
http://www.cureyourowncancer.org/make-the-oil.html
Watch Rick Simpson's run for the cure video.....
We are slowly getting the message that Cannabis should be brought back to where it used to be, a truly amazing gift from nature. I know this post is video heavy but watch this video by Sanjay Gupta
of CNN.



Links
For more information about Cannabis oil and its healing properties. Check out these links.
http://phoenixtears.ca/ 
http://www.cureyourowncancer.org
leafscience.com
endalldisease.com
healingnaturally.co.uk
newcure.org
londoncannabisclub.com
thehealthcure.org



Monday, 28 April 2014

Sunny Spain : Marbella

photo courtesy of Mary Reyes Photography
We spent three more days in Malaga, showed the kids around. Then, we were off to Marbella. Marbella is a popular destination for the rich. The posh shops and yachts reflect that. A shop owner told me Michelle Obama just vacationed there. It was quiet though and again the shop owner was quick to point out that business is not the same because of the recession and that's everywhere in Spain. We travel a lot as a family but it didn't occur to me that my kids and my husband can't pack. I do it for them because it's quicker and I like being organised. They came with a big suitcase of nothing, so we had to go shopping, again. Temperatures were rising so we had to look for a groomer for the dog and had him shaven. How I wished we were just there for a holiday and not for treatments. Marbella is just an hour from Malaga but here they speak English. My brother and sister in law were coming to join us all the way from Jakarta, I was excited. The kids were writing an itinerary. Into the second week there, I started feeling ill, increasingly breathless, sleeping was getting harder. I woke up one day and I just knew I was not well, I asked my husband to take me to the hospital. The taxi brought us to Hospital Quiron, a private hospital about 15 minutes from the hotel. After checking my saturations, I was put on oxygen immediately. Then, they did a scan. I was in very very bad shape. Apparently the treatments I got in Malaga dangerously inflamed my lungs. In fairness, the clinic actually asked not to do a scan yet as it won't be an accurate marker for what I've achieved. But, the doctors were convinced that their treatments were not safe and obviously not well studied. The goal now was to rehabilitate me, bring me back to life. I was given an IV of glucose. This is the first week of August, three months after the diagnosis, they gave me 2-3 months, I cringe at the thought but regain my composure and pray. I asked my husband to bring me my notebook where I had written letters for them. The doctors called my husband in for a meeting, and I knew it was not good news, he came out teary eyed but refused to talk about the scan. he admitted later on that they told him I only had a few days, maybe 3 to live. Get this though, on the third day, I got up and took a shower. My brother and sis in law were arriving that day, I didn't want to be in a stinky mess. It was good to see them, wished under different circumstances but, it was good. I prayed a lot at the hospital, I needed a miracle. The doctors suggested emergency chemotherapy, they did not think I would make it through the flight back to the UK unless I take a medical plane with proper equipment and oxygen. I quickly regained my strength though to their surprise, and by day 5 we were booking our flights back to the UK. The next thing was to buy a portable oxygen concentrator for the flight, the hospital ordered it for us. I was confined for 8 days, literally almost died. Praise God I was spared. We had planned an itinerary with my brother and his wife but we had to go back and leave them there to explore on their own. Thank you for coming to see me.
The alternative treatments did not work for me but I know it has for some less aggressive cancers.