47. The Ripple Effect

A good friend text me when I told her of my recurrence. She said it’s having a ripple effect on her and her family. They decided to go out that night for dinner to celebrate an anniversary. She decided that grabbing those moments is now more pertinent than ever. A reminder that life is short and that we should enjoy the moment more. Her perception of my situation also had an effect back on me. I’ve decided to grab those moments more now too. The ripple has come back to me, it’s more like a boomerang I suppose? So what does it mean in reality to grab those moments and live in the now? What will my life look like if I decide to do that?

My doctors in Istanbul have changed my protocol and frequency of visits. They now want me to return to 10 day visits. At least once a month. They want to put me on new drugs as there’s a chance I’ve become resistant to the chemo drugs I was on. It’s common that drugs only work for a certain period of time and they become exhausted. This is a contributing factor to the recurrence and it was expected. My doctors had planned for a recurrence at this stage and had already decided to change the protocol, i.e, introduce new drugs and change the schedule. I had thought the recurrence was down to me becoming complacent with the diet and taking more time off between visits. And maybe those were contributing factors but it seems as though if this was expected, then the doctors have seen this pattern before in triple negative patients. They are confident that we can get back on top of it with new drugs and more frequent visits. Until the next time. And what do we do then? Do I keep going to Istanbul until we have run out of options? Do I spend most of my time and energy there for the rest of my life however long or short it may be? Where is the living? Am I just travelling there to keep cancer at bay, coming home to recover and going back to do it all again? When do I actually get to live and have a life or is this it forever? Do I die over there? Where does it end? And does it ever end? At some stage I’ll need to decide to stop going to Istanbul.

I started to think about all this on a plane on the way home from England two weeks ago. I had been there for a festival where I spoke as a stage 4 cancer thriver. I didn’t feel much like a thriver at the time, the knock was fresh in my mind. But I got through it and my message was about believing in yourself, the power of the mind and taking healthcare into your own hands. Maybe it was time for me to take my own advice and take my healthcare back into my own hands again. I had spent a year in Istanbul and it felt like it was time to move on. Did moving on mean it was time to give up? And if giving up on Istanbul meant we were out of options, was it time to live and make memories while I’m still relatively healthy and able? On the plane journey, I cried to Paul that maybe my time was up. Is this the end? And if it is, what do we do for the next few months? I told him I wanted to buy a caravan and tour the coast of Ireland with him and Ali. I want to throw my passport away and never get on a plane again. I want to be at home and I want to make memories for her. I don’t want to spend the rest of my time travelling over and back to Istanbul, going in and out of her life again. It was so destructive on her last summer, being away for 10 days at a time was heart breaking for both of us. I didn’t want to do it again. Especially when there’s no end in sight. It’s just not sustainable anymore. We grieved the situation we were in and decided together that we are finished with Istanbul. For now. Never say never, I have a very good relationship with my doctors and I know that they are there for me if I ever need them again. And if I lived closer, I would probably still go, but it is such a strain on our lives to continue to go. Turkish patients do very well there, they go on to live for 10 or more years after a stage 4 diagnosis, it’s easy for them to attend a clinic in their own country. If a clinic like it existed in Ireland or even England, I would 100% be there. But it doesn’t. More is the pity. So what comes next? Is it the end of the road? Was Istanbul the only thing available to me and is it time to give up?

If you’ve followed my blog for any length of time at all, you’ll know that I would never give up. Even if I did allow myself that indulgence for a whole five minutes. And honestly, it felt like a weight off. I know what it feels like now to give in. It feels really good, it feels easy. It is so much harder and stressful to continue on. Being the martyr all the time is exhausting. It was nice to let it all go, even if it was only for a few minutes. I would love if the rest of the path felt that easy. Maybe it can, I just have to figure out how to make it that way. Anyone have any tips?

The urge to stay alive takes over and challenge continues on… I’ve spent the last two weeks organising some treatment options in Ireland. I have managed to replicate the ‘alternative’ side of my treatment in Istanbul. That was easy. I will be attending a hyperbaric oxygen centre in Dublin weekly and I am on a program of regular IV vitamin C infusions in Portlaoise. There are several other bits and pieces too… I will be on the road a lot but I’ll be at home every night. There is a comfort in that. And what about the conventional medical side? I’m well aware that I need to incorporate that side into my treatment plans, don’t worry! I’m not going rogue now… I am taking serious action in that department. I have sent off to a research company in the UK to have my biopsy analysed. They test it against the effectiveness of over 700 drugs and find out which ones will work best against your particular cancer. Even though there are different types of cancer, they don’t always behave the same. Our bodies are different and a one size fits all approach isn’t the best solution. That is why when given the exact same protocol, some people live and some people die. Having this information is invaluable. I don’t like talking about cancer treatment in terms of fighting or war, that terminology doesn’t sit well with me. But in this case, having lots of treatment options is like having several lines of defence. Because unfortunately, that is what is needed with stage 4 cancer. It comes back. I’m not sure it can ever be cured. Managing it with several lines of defence is the best we can do for now until something better comes along. Or until we work out how our bodies can switch it off for themselves, or how our minds can control what happens on a cellular level, how we can, if ever, overpower it and heal with our inner systems. When I figure it out, I’ll let you know. For now, I’ll be finding out which drugs will work for me along with keeping up all the alternative work to support my body to heal to the best of its ability. And I’ll be doing all of this while touring Ireland in a caravan for a night or two, here and there. I’d love to hit the road for a long trip, but treatment and management of this dis-ease in my body still has to be top priority. I’m just glad I can do it from home. And find those moments to live and make memories in between.

paul and ali

I will most likely be going back into the Irish healthcare system to access the drugs and treatment I’ll need. It’s doubtful I’ll be going back to the ice queen. Could you imagine if I ended up in her care after all this?! Haha! I don’t think so!!! I don’t really like the thoughts of the Irish system, but I’ll be better equipped with the mindset and the knowledge that I can overcome this challenge. I have done it once already, I can do it again. A friend of mine said when I told him of my recurrence, beating cancer twice sounds way better. That it does. Watch this space…

Has the ripple effect got you and your family to look at things a different way? Are you grabbing those moments more often, being nicer to your husband or hugging your kids a bit tighter? If you have been positively influenced by my writing or how I share my story, would you consider pledging your support to me on my Patreon page? Even though I am not going to Turkey anymore, the expense of treating cancer with all the alternatives is expensive, more than a regular wage could afford. We are away at the moment in Killarney for a couple of nights, a lovely gift from Paul’s mother (sharing some videos and photos on Instastories on Instagram… @mcwellnessmindandbody). We are going to see Fungie this afternoon and then tomorrow it’s back to Portlaoise for IV treatments. This will be our life for the foreseeable, grabbing the moments in between treatments. I’ll have the results of the biopsy testing in a couple of weeks and will know more about the next step in the conventional medical world then. Hopefully it won’t be too harsh and I can continue to feel relatively well. Thank you for your support along the way, it means so much to have so many people cheering from the side lines.

memories

9 comments

  1. Do you know what – you are amazing- your life your journey takes on a different sparkle in your hands😊 you make great decisions and hopefully even better memories – keep being true to you

  2. After reading your blog I find your strength and courage overwhelming… I’m in aw off you. I’ve come through cancer myself and it’s not easy but I agree that trying to be positive can be very exhausting it’s now a year and a half later that I feel it’s hit me. It’s takes a lot off energy to be strong all the time. I think if you can be true with each emotion your having instead off hiding it away it’s easier..
    Yes I agree that I diff see my kids n hubby in a different way I’m much easier on them less giving out.
    Enjoy each day ye have making memories and keep the fight going.
    Thinking off you. X

  3. Hi Mairead. I have been reading your blog for a year or so, and always find it uplifting. I am in a similar situation, being diagnosed at 35 with stage 4 breast cancer, though i am not triple negative. When diagnosed I had 6 liver Mets (all small) and was just told “no surgery, palliative treatment only”. I had chemo, which reduced the tumours in my liver to 5. I have been on hormone therapy and stable for 16 months. Last month I had the much-fought-for liver resection: they expected to remove 5 tumours (45% of my liver), but could only find one tumour and 2 areas of scar tissue 10% of my liver – on biopsy the scar tissue showed no cancer cells. The hospital, of course are taking full credit, saying that I have had a complete response to chemo and hormone therapy. And i am sure they have played a part. But i see a nutritional therapist, follow a low-carb, no-dairy, no-wheat diet, take a bunch of supplements and most importantly I have been having mistletoe therapy since December 2016. The visco-toxins and lectins in the mistletoe have been shown to have an effect on cancer cells in vitro. And there have been a few papers published – case studies – where patients have had amazing results, though nobody is selling a “cure”. I just really wanted to recommend it to you, as I am absolutely convinced that it is making a difference to me. . Please look into it. I am happy to share details if you are interested. . I know that I am just a stranger to you, but I am not selling snake oil. . . .

      • I am in Stonehaven, Aberdeenshire. The best place for mistletoe therapy in the UK is in Aberdeen at Camphill Wellbeing Trust. They do high dose IVs, intra tumour injections and subcutaneous injections for patients to do at home. I have been doing all 3, but lots if people just do the subcutaneous injections. The place is amazing! It was the only place to offer me a little bit of hope right at the beginning when everyone else was just telling me “systemic disease, chemo”. It is so calming and restorative. I have a high-dose IV there every 3 or 4 weeks, and often an injection into the breast at the same time (no mastectomy yet, but hopefully soon), and inject at home twice weekly. But the recommended treatment varies from patient to patient, depending on how we react, what else we gave going on, etc, ets. They even have a self-serving flat for patients to stay in whilst doing the high dose induction. . .I had 5 IV treatments of increasing doses over a fortnight, to start my treatment.

  4. Sorry, just to clarify: i am not selling anything. And the place I go to has a really good set-up for payment. I am just so convinced that it is beneficial, that I want to tell the whole world about it.
    Good luck in your treatment, whatever you decide to do.

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