22. A year into healing stage 4 cancer – Happy anniversary to me! The 5 most important things I’ve learned this year.
A year ago today I was diagnosed with aggressive triple negative breast cancer. The initial diagnosis was stage three after a biopsy and ultrasound a week previous. I spoke to my sister on the phone the day before and I remember saying I could handle stage one or two but I hoped it wouldn’t be any higher. Since the biopsy and the consultants words of ‘we found something suspicious’, I had become obsessed with looking up survival rates. Stage one had a 100% five year survival rate, stage two had a 93% survival rate, stage 3 had a 72% survival rate and stage four had a 22% survival rate. I definitely didn’t want that. The following week I was diagnosed with stage four, it had spread to my liver. The consultant told me I was going to die of breast cancer. I hated her for it.
It’s been a crazy year. I left my job, moved house and took on a 10 month task of healing myself naturally. I had some successes along the way and I had slowed the progression but a scan in May had showed the cancer had progressed to my vertebrae and hip bones. I was faced with the possibility of losing my ability to walk or worse, my liver packing in. I was losing control of it and I needed to do something drastic. This past 2 and a half months, I have been under the care of doctors in a clinic in Istanbul where I’m receiving a combination of conventional methods (chemotherapy and other drugs) along with supporting natural methods (high dose IV vitamins and minerals, hyperthermia and hyperbaric oxygen).
So what have I learned in this past year? Well a lot, actually! I have been on a journey of discovery of the pitfalls of Irish healthcare system, scanning methods, GP care both good and bad; alternative cancer treatments including cannabis oil, juicing, coffee enemas, detoxing, hyperthermia, ketogenic diet, alkaline diet, supplements, vitamins and minerals; an in depth look at myself and my body’s energy by means of psychotherapy, bio-energy, kinesiology, release therapy, neurolinguistic programming, spirituality, meditation; and most recently, international cancer clinics, chemotherapy and navigating the side effects and integrative cancer care. I have learned so much from constantly researching from day one and have shared a lot on this page since I started blogging about it all in April. But the most important things I have learned are as follows…
1. People are amazing
From the very beginning of this journey, I’ve had nothing but support from the people in my life. From leaving my job without any notice thanks to the kindest boss going, to moving house over a weekend with the help of friends and family giving their time, vans and cars. My mother found a beautiful house for us to move into in the space of a week, we didn’t even view it. Her word was enough. We happily call it home now. Friends, family, my community and people I don’t even know have shone through this past year in so many ways. I’ve had people visit to spend time with me, to cook me food, clean my house, take Ali out to the playground for an hour, I’ve had people pray for me, give me medals, light candles for me, I’ve had a group of friends send healing energy my way every Wednesday, I’ve had my name added to numerous lists for receiving healing energy, I’ve gotten recommendations for treatments to try out, some of which have been integral in my self-care, family and friends have come to visit me and help out from all over the country and different parts of the world, people have organised events and donated money to me to allow me to go to Istanbul for the treatment I am receiving at the moment. I have had friends and family come to Istanbul with me to look after me which hasn’t been easy for them. It has been overwhelming at times to think that so many people want to help me. It has been the most humbling experience. People are truly amazing, especially when something like this happens. Once you ask for help and open yourself to it, great things happen. I feel very fortunate to be in the position I am in.
Two of the most amazing people on this journey with me have been Paul and Ali. Both are naturally resistant to change and have had to go through a lot of it! Ali has had to move house, change crèche, had her mother and father come and go from her life regularly for appointments, weekend workshops and most recently, trips to Istanbul. I won’t say it’s been smooth sailing for her, she hasn’t enjoyed the upheaval but she has become a lot more settled recently and she is used to mammy coming and going now. She is an absolute trooper and a really happy little kid and a lot of that is thanks to our families for stepping in when needed to keep her life stable and in routine. It is also thanks to the crèche she attends, they have really gone the extra mile and spent time with her to help her settle and feel comfortable there. And it is mostly down to Paul’s consistency with her, he is the stay at home parent at the moment with me being away and he is the best Dada. She is thriving with him and she loves him so much. It’s tough for me not to be able to be in her life more but she is daddy’s girl and she can’t get enough of him and I love to see that. Yesterday, when I arrived home to pick her up, we were talking in the car and I said Mammy’s home now and she kept saying, no, Mammy go to Turkey! Dada’s home. She really made sure I knew who her favourite was!
Paul has been the best support I could have asked for this last year. He has been there with me from my first hospital appointment all the way through. We made all of our decisions together and even though it’s been my body the cancer is in, we have been healing it together. He has been my nurse, my chauffeur, my cook (he’s not great in the kitchen but given instruction he can whip up a mean slice of toast!), my confidant, my partner in decision making, my challenger, my rock, my shoulder to cry on. He picked me up when I was down and when he was down himself and barely able to keep all things going. But he did it and we have come through to easier times. It’s still not easy but winter was very hard for us when the reality of what was happening set in. We had a dark few months and I think if we can come through that, we can come through anything. We are able for this challenge together, I don’t think I could do it without him. I’d go as far as to say that Paul is saving my life, one day at a time.
2. Pitfalls of the Irish healthcare system
My first visit to my GP in Dublin a few days after I discovered a lump in my breast last May was very easy going. She wasn’t worried. It’s probably a fibrous adenoma, she said, very common in people your age. She sent a referral into the breast clinic for a check-up anyway. There was no urgency on the referral, she stuck to the guidelines on the form, which she showed me a few weeks later when I came back to her and she realised she fucked up. She wanted me to see she had followed protocol. Another lump had formed and I hadn’t gotten an appointment from the hospital even though I called them several times, my case wasn’t urgent enough, so I went back to her. At first she said a second lump was a good sign, fibrous adenomas can be numerous. But on further examination of the breast and my underarm, her face dropped. She tried to hide it but I could see the change. She showed me the referral form and pointed to the places where it said my age was low risk, and one moving lump was low risk, and no skin redness or puckering was low risk. With a second lump and a lymph node lump which she didn’t disclose at the time, she said she would upgrade the urgency on it. I left her clinic and was barely 5 minutes in the car when I got a call from the breast clinic to come in a few days later for further investigation. It was 10 weeks from when I first visited her to when I was seen in the breast clinic. Plenty of time for it to progress in stages and spread through my body. And it seems like a phone call is all that’s needed really, referral forms are there for what reason?? To clog up the system? She said to me on my first visit that they can’t send everybody in that presents with a lump, the system is overloaded and it’s best to manage these things as we see fit. I wonder how many other people have had this experience?
3. Doctors don’t know everything
In my experience of doctors and consultants in Irish hospitals, I can say that they think they know everything but they don’t. They work from the information they have at the time and they think that’s all there is. They rubbish any other sort of treatment outside of their own tried and tested methods from peer reviewed medical research. The research is limited to surgery, chemotherapy and radiation. A lot of it is outdated. There are new methods now including immunotherapy but you need to have gone through first round chemotherapy before you’d get onto a clinical trial for immunotherapy. I’m not sure how good that is anyway, the survival rates for stage four are appalling, it’s lower than 20%. I’ve been told first hand from someone who did it that it almost killed her, she had to stop mid trial. These treatments are so harsh on the body. I have discovered that in my own experience of chemotherapy. It really fucks your body up. It’s sad to think that in this day in age, that medical professionals in Ireland are restricted to offering you treatments which they’re bound to by law. An almost 100 year old law prevents practitioners in Ireland from offering you anything but what I have mentioned above. And if you want to try something alternative, they will tell you you’re stupid. That you’re using ‘cow dung’ or ‘snake oil’. The last consultant I saw in Ireland before I came to Istanbul told me to be careful. Those methods are experimental, she said. Yes but you’re offering me palliative chemotherapy which will see me dead in a few years at best. Am I not better off trying to heal completely? Incidentally, my breast tumours which had broken the skin and grown over most of my breast have now completely healed. I don’t need dressings anymore and the lump I now feel is much smaller than the one I first discovered last May. My PET scan next month will show if this ‘experimental’ treatment has done the job.
I have many issues with oncology doctors in Ireland. They only treat cancer from a strictly medical viewpoint and don’t look at all of the other supporting treatments which can help. They have no interest in diet. Eat whatever you can to keep your energy up they will tell you. They have no training in diet either which is bloody astounding as what we put in to our bodies effects what happens in there. Especially with cancer. Cancer cells have at least 10 times more receptors for glucose than a regular cell making it greedy. Glucose is also its preferred source of energy. Starving the body of glucose and switching over to a fat based diet is what I am doing at the moment in the clinic I attend. It is called the ketogenic diet and there has been some amazing successes attributed to it. It is a huge part of my protocol. It works alongside the conventional medicine part. Something which needs to be looked at in Ireland. It is absolutely criminal that nutrition is not a pillar of healthcare education for doctors. Food is where medicine began. There are cures for almost everything in nature. Ginger for nausea, cranberry for bladder issues, cloves for a toothache; the list goes on. To go away from that completely, doesn’t make sense. We should be trying to heal simple medical issues naturally before reaching for the pill box. Or better yet, get to the root of what is causing the problem.
What I have learned in this one long trip around the sun is that cancer treatment needs to be varied and integrative. It is with trial and error and experimentation and research that I have found the things that are working for me at the moment. The ten things I am doing now to treat my cancer are:
- Treat the physical symptoms (if it’s a later stage cancer, chemo, radiation, surgery);
- Support with healing treatments (high dose vitamin and minerals, various cancer killing supplements like turmeric, mushroom complex and THC, hyperbaric oxygen, hyperthermia;
- Support with a healing diet, eat organic foods and cut out toxins;
- Get to the root and heal the mind with counselling and psychotherapy;
- Heal the body and mind with bio-energy, kinesiology and reiki;
- Change the lifestyle by adjusting a work-life balance and cutting down on drinking, smoking and stress;
- Cut toxins out of your life, toxic food, toxic cleaning products, toxic skin care, shampoos, air fresheners, candles. There are toxin free alternatives for every product available in your local health food shop.
- Detox the body. Coffee enemas, green juices, lymph drainage, seaweed baths are all good methods of detoxing. Wait until 6 months after chemotherapy to detox or you could do damage to your liver.
- Connect with yourself through mindfulness, meditation, spiritual experiences. Get in to the body, talk to the body and listen to what it has to say. This might sound crazy but we spend all of our time in the external world and rarely go inwards. The answers to all of our problems lie inside. Getting in and connecting with ourselves is where we will find real truth. Become intuitive.
- Connect with others. We can’t do this alone. People thrive in community situations and die alone. A famous study called the blue zones identified 9 communities around the world where many people live to be over 100. One of the main common threads was community. We need to connect more with each other to live healthier lives.
On the flipside of my point that doctors don’t know everything, I would like to give a mention to my GP in Strokestown who I have to thank for giving me the push to go for treatment in Istanbul after making me aware of how serious my situation was. I presented to him with a pain in my chest one Friday afternoon in April. I couldn’t breathe I was in so much pain. After a quick examination, he said that I needed to rush to hospital and get a bone scan among other things. He worried that the cancer had spread to my bones. I arrived to A+E in the Mater hospital Dublin the following day with a letter from him asking for various tests, including a bone scan. I was given a chest x-ray, some blood tests and after a long wait, was sent home with painkillers and told that the pain in my chest probably wasn’t anything to do with the cancer. The x-ray didn’t show anything and I should feel better after a few days. It wasn’t until a few weeks later in Istanbul when I got scans results that they discovered I had a broken rib. I was pissed off to say the least about the treatment I had received in Dublin yet again. It angers me that people don’t do their jobs properly when something so serious is at the centre of it. I have Dr O Donnell to thank for identifying that it had travelled to my bones long before any scan could show me. He is an excellent doctor and restored my faith in the medical profession somewhat after so many others had made me turn my back on it.
4. I am resilient.
In the beginning I thought I wouldn’t be able to handle it if I got a stage three diagnosis or over. I thought I could deal with stage one or two. The survival rates were so much better and it would be a walk in the park. Then I got diagnosed with stage three and it was triple negative, the most aggressive and hard to treat of the breast cancers. At that stage, the consultant in the hospital told me he could cure me. We can do some chemo, then do surgery and then radiation and it won’t come back. He seemed sure. I didn’t like the sounds of it. I went home and researched other ways. I kept coming back to ‘we can cure it’ and had some mental anguish that week over what to do. Would I have been silly not to have gone for that? The option was quickly taken away when I got back to the hospital the following week for results of a PET scan which had shown it had travelled to my liver. Surgery was not an option now and I was told I would die of breast cancer. All of the other options I had been looking into the previous week were now bright ideas in my head and a lightbulb was flashing. This hospital business is not the way forward. I am not going to do palliative chemotherapy, there are other ways. I felt lighter that day with a stage four diagnosis than I had the week before with a stage three. A weight was lifted. My path became clear. I could handle this.
Little did I know that my main treatment option I had chosen would be so difficult. I chose to take THC cannabis oil and I thought it would be grand. Sure I’ll be stoned all the time and I can watch plenty of movies and giggle my way through it! No, no, no! That is not how it goes. It was a very tough time for me and Paul. It put me into some dark, depressive states and I became a shell of myself. I spent days on end in bed unable to function avoiding the phone because I couldn’t talk to anyone. I would panic when it rang. I couldn’t drive because I would be a danger on the road, my short term memory was shot. I became almost completely dependent on Paul. I was working through a lot of stuff in therapy at the time and it exacerbated my moods, most of which were low. It made them worse. I was no fun for those few months. I had some nice high times, don’t get me wrong, but the low outweighed the high by a long shot. It’s not an easy treatment option and I wouldn’t advise anyone to take it lightly. It’s also very easy to overdose on it and I did that several times. An overdose to me felt like I was going to die. Any little ache or pain in my body was another tumour growing. If I felt a twinge in my liver, it was shutting down. If my heart started to beat fast, I was having a heart attack. I came very close to ringing an ambulance one day when I was home alone and had overdosed. I kept having to remind myself that it would wear off. And it did eventually, sometimes after 12 hours. Complete torture. Those were rough days!
Hair loss was something which I thought would make me crumble. I was so happy after diagnosis that I decided not to do chemotherapy and I would be able to keep my hair. It was a big deal at the time. Jump forward 10 months and I’m confronted with the possibility of losing my ability to walk due to tumours in my spine and I quickly got over the hair loss. I took it completely in my stride, it didn’t matter to me at all. I thought it would be awful to lose my hair, and it’s not the prettiest picture being bald, but it’s nice to not have to wash it all the time. There’s a big freedom in not having long hair. I can hop in the shower twice a day now if I feel like it and have a proper head scrub and it’s not an ordeal, like anyone with long hair will know. It’s a pleasure, and it has saved me from feeling ill over in Istanbul because I get to have a good scrub and wash the smell and taste of the clinic off me in the afternoon and forget about it. I have taken to turban wearing which is something I love now, I have lots of scarves and I like to experiment with layers and styles. It makes me feel better and I think they’re quite glam looking! I haven’t really gotten into wig wearing, I find them a nuisance really. I think my bald head is too small under them, they feel loose and heavy. And I used to live for wearing wigs to festivals, I would buy them months in advance and plan my outfits around them.
Chemotherapy and travelling regularly to Istanbul been a pretty big test of my resilience. I come and go from Istanbul every 10 days and in the 10 days I’m there, I have a pretty gruelling schedule. I arrive on a Sunday night, usually at about 1am. I will have been fasting from 6pm that evening and go to the clinic for 8am Monday to have bloods taken to see if my white blood cell count is high enough to continue with treatment. After the results come back, I get about ten or twelve bags of fluids pumped in to my veins over the space of a few hours. Four or five are chemotherapy and the rest are a mixture of vitamins, minerals and other drugs like anti-nausea. I have to swap over veins at least once or twice because they become so sore from the toxic liquids. Some of my veins have become unusable now. Chemotherapy destroys your body in so many ways. As I type this now, my arms are sore and swollen from where the toxins have leaked into the surrounding tissue. They are black and blue in several places and can take a couple weeks to come back to normal. Then it’s time to go back and do it all again. The days I receive chemotherapy are the toughest. To increase its effectiveness, I have to be put into a heat chamber of 60 degrees for 90 minutes. After the 90 minutes, they take me out of the chamber but wrap me in foil blankets to keep the heat in for a further 60 minutes. This heats my body up and puts it into hyperthermia, causing my immune system to attack. It is a way of killing cancer cells and using chemotherapy at the same time makes it very effective. It is a clever treatment but it is so, so difficult. It is the most uncomfortable experience and I absolutely hate it. The only part of my body I can move is my head. I’m completely disabled in it and I have to rely on my helpers to care for me with fans, sips of water, cold cloths and cold spray. It makes me feel sick to even write about this now. During my last chemotherapy experience, my body put itself into hyperthermia naturally after having a reaction to the drugs. It was a very scary experience and I didn’t know what was going to happen to me. Even though I don’t get chemotherapy every day of my ten days (I get it for two), I still undergo a lot of other treatments. I use a hyperbaric oxygen chamber which can be quite enjoyable if I have a snooze or do some meditation in it, I use a local hyperthermia mat which heats the middle section of my body, not the most pleasant experience but not as bad as the heat chamber. I also get infusions and other drugs every day through IV. I am poked with needles every day and I get several injections into my arms and legs. I am a pin cushion and my poor body is black and blue from it. It is tough going in Istanbul. I get a breather on the weekend in between treatments which is nice and is badly needed. I usually go out to lie by a pool (I’m not allowed swim in case of infection) or for a spa treatment or do something to soothe the body. I think ten consecutive days in the clinic would drive anyone to despair. I always get pissed off towards the end and am dying to come home.
Getting through all these stages is hard but not everything comes at once and dealing with things day to day seems to work for me. When I get lost in worrying about what’s coming next, I start to panic and think that I won’t be able to do it. It’s natural to feel that way. But a wise woman recently reminded me to trust myself, when I had done that in the past, things worked out the way they were supposed to. So I’m back to trusting all will work out now and that’s a key to resilience for me. I know I am going to be ok, I just need to come back to that deep inner knowledge and trust that it will happen.
5. Mindset and Positivity are key
This has probably been my most important learning. The times when I’ve felt most positive and my mindset has been focused and clear, are the times I am healing. The times I’ve felt down and confused and let the negative words of others circle in my head were the times I was dying. I have been able to physically see and feel my breast tumours since the start which has allowed me to monitor growth and shrinkage. And both have happened many times. There were long periods where no change happened at all, either growth or shrinkage and at those times, I was keeping it at bay. Seeing how much it had grown in the ten weeks I was waiting to be seen for a biopsy, I think that was pretty good going. At that time, it had gone from one lump which was the size of a small grape to two which were the size of large grapes. I also had a huge healing experience where my tumours shrunk by more than half over the space of a couple of days. It came in conjunction with some work I did with one of my therapists, Moira Geary. When we spoke over the phone before we met, Moira said that focus of the therapy is on giving emotional relief and if that helps heal the body, that is such a bonus but she would never claim that it would or could. But it did happen for me. It was a remarkable moment and myself and Paul laughed and cried as we watched them shrink before our eyes. We couldn’t believe it! Moira had helped me let go of old patterns of behaviour and negative emotions through her unique methods of release therapy. I released a lot that day. At the end of the session, Moira said ‘at least now your body can have a chance to heal’. And boy did I heal. Our minds hold such incredible power over our bodies. So much so that it can cause tumours to shrink or to grow.
I can equate each growth spurt with an experience which has altered my mindset and every one of them has been when I have visited hospitals in Dublin and listened to the words of consultants. You are going to die of breast cancer, it is spreading, you only have a few months to live, you are running out of time, your liver will fail and you will die… every time I tried my best to not let it affect me but every time it did. It is impossible to shield yourself from that. Or if it is possible, I haven’t managed to master it yet. People thought I was mad to stay away from the hospitals and doctors but I knew it was damaging me further every time I visited. And it took me weeks or even months to get back to myself and to focus again and get my body into healing mode instead of dying mode. In hindsight, I would have visited the hospital far less. People become obsessed with scans and having proof of what’s happening, especially after my massive healing experience which I believe happened due to the releasing of negative emotions in my first session with Moira. And I listened to people too much in that respect. When is your next scan? When will you have results? When will we see that what you’re saying is true? I knew when I was healing but no one could feel what I could feel, people wanted black and white results. I damaged my healing journey by going along with this. And every time I went to the hospital to book in for a scan was the time I would hear those damning phrases which switched me over from healing to dying. Scans which happened a few weeks later showed progression because in that short space of time, a lot of progression was happening due to the switching of my mindset. It’s amazing how quickly tumours grow when the mindset is off. Before I came to Istanbul, my breast tumours spread like wild fire in a short space of time. I had a red mark on my breast from Christmas and it barely changed until the end of March. I visited a consultant in the end of March and by the end of May, my breast was unrecognisable. The tumours had broken the skin and had grown all over my breast in the space of seven weeks. I know that was down to the words spoken to me by the consultant which changed my mindset. I had gone from having a massive healing experience to now having an unrecognisable breast. It was horrendous. All because I needed proof of healing and chased the scan. In those seven weeks, I thought I was going to die. I opened an email address for Ali and started sending her emails and photos daily. I started frantically researching the next big thing in cancer cures and found myself going down the same web wormholes I had when all of this began. I got lost in myself and I lost focus. All because the words of the consultant got into my head. It took me a while to get back out of that one. I actually became refocused when I attended a weekend retreat with Moira in Limerick and all became clear again and I regained trust in myself. The following week I booked a flight to Istanbul and then next part of the healing journey began.
I could go on and on about mindset and positivity but I think this post is now getting out of control, if you’ve gotten this far you’ve read more than 5000 words. Thanks for sticking with me! I will say one last thing though about mindset and positivity. People tell you it’s the most important thing in this journey and they are right. But the one thing you don’t have, is control over it. To gain control is very difficult. It takes patience and practice and I’m talking about going inward and changing through practices like meditation and mindfulness, which is not easy. Surrounding yourself with positive people and well wishers is also so important. And even though I didn’t believe what the doctors were saying, a part of me did because it wouldn’t have affected me so much if I didn’t. It’s hard to discount what they say when we are indoctrinated to believe figures of authority. Doctor knows best and all that!
I’ll leave it there. It’s been a whirlwind of a year. It’s been great at times and it’s been challenging as hell. The 18th of August will be a new kind of anniversary for me. The date my life changed forever. The date an opportunity was given to me to become a better person. The date when I had the choice to stay or go. What needs to happen to you to make changes? Or do you even need to? I had a harsh wake up call, one of the harshest there is. But I still have a chance and a choice and I am choosing to change and be better. Who knows what the next year will bring. I’m sure there will be a few more challenges along the way but I’m able for it. Thank you to everybody for all the love and support so far. I am forever grateful x