What needs to change

I don’t believe in regret. I believe that we should live our lives as best as we can, treat people as we would like to be treated ourselves and always be respectful and then we hopefully will not have anything to regret. But when bad things happen or things do not go according to plan then my attitude has always been that there is no point dwelling on it. What’s in the past, is in the past.

So there have been many times since my first diagnosis with breast cancer in December, 2015 when I have wondered what may have caused it. Could it have been the two cycles of IVF? Could it have been the progesterone tablets that I was on for years to help with the pain I used to suffer monthly? Could it have been all the chemicals in the products I used or the crap in the food that I ate? But these thoughts are usually fleeting – there is no point dwelling on what might have contributed as most likely it is a combination of a whole bunch of factors and the important thing now is to try to heal and be calm, not to obsess.

I also don’t believe in harbouring anger or resentment. Since my diagnosis, there have been a lot of mistakes made with my treatment, especially during my stay in hospital, but again there is no point dwelling on them as the only person it will hurt is me. So I dealt with the anger at the time. I did make an official complaint to the hospital and then I put it behind me.

However, there are a few things about cancer treatment on the NHS that I do want to say in the hope that it may at some point help somebody else who is going through similar things. But before I do, I know that some of you are waiting to hear the results of the brain MRI that I had last week. So here it is…

Latest results

Yes, the cancer is now in my head. It is not in my brain as such as I do not have brain cancer, but there are tumours floating in the meningeal fluid that surrounds my brain and there are a few tumours of under 1 cm that have attached to certain places in my head. Apparently, this deposit of tumours is very uncommon as normally they just float around in the fluid. So not only do I get one of the rarest types of cancer (leptomeningeal carcinomatitis), but I get an uncommon type of a rare type. Trust me!

Okay, enough about the results.  Let’s get back to the medical system and cancer treatment (focusing on the UK but this may also be applicable to other countries). Could more have been done to prevent me getting to this advanced stage and would it have helped? I truly believe that more could have, and should have, been done before my diagnosis, during my treatment and most importantly, after I had been given the all clear. And here’s what…

  1. Mammograms after 40

Currently in the UK mammograms are not offered to women until their 50th birthday. There has been a lot of talk of extending this to women in their 40s but so far this is just talk. I was 44 when I was initially diagnosed and I had quite a large tumour which had probably been there but undetectable for many years. If I had had a mammogram at 40, it probably would have picked up on the tumour and I may have been able to have treatment before the cancer became so aggressive and spread. However, finding it early would have been no guarantee that treatment would have been more successful as mine was the most aggressive type of breast cancer and the younger you are, the more aggressive it is. Plus there is the added complication that had I been diagnosed sooner, we would not have been allowed to adopt Charlie and I would never have had the chance to be a mother.

Apparently, there are also a lot of false diagnoses based on mammograms of younger woman and women are being given unnecessary treatments due to finding tumours during mammograms that may not have necessarily developed into breast cancer. So I am still in two minds about this, but it is definitely something that needs to be carefully considered.

  1. Tumour marker test

Did you know that for many types of cancer, including breast cancer, there is a simple blood test that can be done that measures tumour cells in the blood? No, well neither did I! Not through my whole initial year of treatment and not through the next year and a half when I thought I was cancer-free, but wasn’t. Yes, it turns out that there was a simple blood test that could have been done that would have picked up on the breast cancer tumour cells in my blood and alerted me to the fact that the cancer had spread. The breast cancer tumour marker test is called a CA 15-3 test (catchy name). In a healthy person, these markers should be less than 30 and when mine were finally tested after I had ended up back in hospital, mine were over 5000. Had these been tested much earlier, it would not have stopped the spread of the disease as it is an indication that it has already spread, but it could have prevented me getting into such a serious state with two collapsed lungs. It could have meant earlier chemo treatment which may have prevented some of the spread to my liver and bones and maybe even my cerebrospinal fluid. It would have meant that I would have started on my anti-cancer programme of plant-based diet, detox and supplements much, much sooner and It could have made quite a big difference.

And why isn’t this done as a matter of course? The test is quite expensive and the accuracy has been questioned. Sometimes advanced tumour markers do not correlate to advanced cancer and sometimes people may have a lot of cancer spread but this does not show up in the tumour markers. However, with me it would still have been a very useful test, would have allowed me to be treated earlier and could have made a lot of difference.

The most annoying thing is that nobody ever told me about this test. If I had known about it, I would have requested it and had it done every few months and if my consultant refused to do it, I would have paid to do it privately. I should have been given the option.

  1. Follow up scans

This is something that I don’t really believe in, but I am asked about all the time so will touch on it here. When I discovered that my cancer had spread to my lungs, liver and spine in July, 2018 the first thing that most people asked me was “why hadn’t I been having regular scans?”. Well, the problem with scans (CT scans and MRI scans) is that they take a long time, are very expensive and are dangerous over time due to the huge amount of radiation involved. So to scan every six months or so just as a matter of course, would really not work. First of all if every single cancer patient had regular scans once they were okay, then the NHS would probably need another thousand scanning machines and hundreds more staff. Plus, what would you scan? Head? Spine? Legs? Whole body? (Imagine the amount of radiation and the time that an entire body scan would take). No, it just wouldn’t work and I believe would cause more harm than good. Right now what happens is that if an ex-cancer patient complains about pain or a problem then they will be given a scan of that particular area. That should be enough. Unfortunately, I put all my symptoms down to other things, like excess exercise, and so had not gone to see anybody about them.

  1. Integrative approach to treatment

This is what I think is one of the most important points and could make the biggest difference to treating cancer successfully. There are a lot of alternatives out there to traditional cancer treatment. When I started doing my research I found tons and tons of information about ways to treat cancer naturally. However, this is not what I mean by an “integrative approach”. I believe that there is benefit in traditional cancer treatment as well as alternative treatments. Chemotherapy and radiotherapy weakens the immune system as well as killing cancer cells. This puts the body in a very difficult position to then get healthy again and there is very little hope that the immune system will then be able to do its job and fight off any recurring cancer cells. And this is where diet, lifestyle and alternative treatments play their part. If traditional oncologists would share information and work alongside of alternative therapists then they could come up with an integrative approach that may actually really work. But they don’t. At least not on the NHS. And that sucks.

And it isn’t just about diet or exercise or yoga and Reiki and supplements. Multiple studies and research is now showing that there are many existing drugs, such as metformin for diabetes, that have surprising benefits for cancer. Some prevent new cancer cells from forming, some kill off existing cancer cells or kill off their food supply so they cannot grow. There are many, many of them and the best thing is that they are already in the public domain and are very inexpensive. But because of this, the big Pharma companies are not interested in exploring their use for cancer. Why not? There isn’t money to be made in it. Chemo drugs cost thousands and thousands of pounds and bring in millions of pounds for the big companies. Repurposed drugs (drugs which are intended for one use, but have additional benefits for other uses), will not.

So for me, forget about giving money to the big cancer charities as this only goes back to funding research into traditional cancer treatments to line the pockets of the big Pharma companies. Instead, we need more education about alternative and integrative treatments and there needs to be a much more integrative approach with everybody working together. So yes, chemotherapy may still have its place, but with the chemotherapy doctors working alongside integrative oncologists we could have low-dose chemotherapy (rather than the current practice of giving as high a dose as the patient can possibly tolerate) alongside of repurposed drugs and supplements and education about diet and health. We could have cancer centres with everything under one roof. We could have more information on diet and lifestyle and nutrition for prevention of cancer as well as other illnesses like diabetes and obesity. Imagine how much money would be saved if less people got sick in the first place? It is possible. The following book is a revelation and should be mandatory reading for everybody…How Not to Die: Discover the Foods Scientifically Proven to Prevent and Reverse Disease by Michael Greger.

How not to die book

 

  1. Care Oncology Clinic

Finally, I wanted to mention the Care Oncology Clinic (COC). This is a centre in London and also apparently in the US which is doing a huge study on exactly what I was talking about in number 4 above. They are looking at the effects of using repurposed drugs alongside of chemotherapy to treat cancer patients. However, very few people know about this study as in the UK it is illegal to advertise cancer treatments. So here is a link if you want to know more. Please do share this with anybody you know who is in a situation where it might be useful…  http://careoncologyclinic.com/

So, enough about what could have been done and about the past because I am not living in the past, I am living in the present. What now for me? Well, I have seen my oncologist and a radiotherapist to discuss the potential of radiotherapy but having done my research and following this discussion we have ruled against it (as we have against chemo). Radiotherapy could shrink some of the existing tumours, but it has not been shown to have any long-term effects on prognosis and is merely to treat the symptoms which, in my case, are not serious enough to warrant the side-effects that I would suffer. Radiotherapy to the head can cause headaches, nausea, extreme fatigue and cognitive impairment and the symptoms can last six weeks or more. If I only have weeks or months left then I am not willing to spend them suffering from yet more treatment.

So I am still living day by day. I had yet another afternoon tea, this time with my mum.

Mum and me
My lovely mum and me

I have had a wonderful visit with my sister and niece.

my family
Family: Me, niece Gemma, dog Jarvis, Mum, sister Nicola

I have been to a Michelin starred restaurant for Neil’s birthday…

Followed by a lovely walk on the beach near Whitstable…

Selfie’s with dog are not easy to take – treats needed

and today we went to a restaurant in Blackheath called Copper and Ink run by a Master Chef finalist.

Yummy food at Copper and Ink
Mackerel starter at Copper and Ink in Blackheath

For the most part, I am still sticking to a vegan diet but I am also indulging myself (this week seems to have been pure indulging) and enjoying my food. For the past two years I have really wanted to try a Michelin starred restaurant as well as a restaurant run by a Masterchef finalist or winner and now, in the space of 2 days, I have done both!

Finally, we have a holiday in Center Parcs booked for the start of April and I am now  hoping beyond hope that I will be well enough to get there. Fingers crossed.

And although, let’s be perfectly honest, my prognosis is dire and this disease is not treatable, I have still not given up. I am now taking a number of repurposed drugs prescribed by my integrative oncologist and we will see if they have any effect. Knowing that I have tumours around my brain is a worry, but I am able to relax over a nice meal, or in the sauna, or in a nice hot bath, with a good book or with chocolate (more than 80%, no sugar, etc)! Ha, ha.

Interestingly, last night on the news there was a story about one of the ladies from the radio show You, Me and the Big C. She has stage 4 cancer and was discussing making plans for end of life care. And yes, that is something that I am now addressing. We have been to visit our local hospice, which is very nice, and have another meeting with them at home tomorrow. They can offer care in the house, but my wish is for our house to be a nice, happy and relaxing place for Charlie and when I do get very ill or if my personality changes due to the brain tumours than I would like to go into the hospice. The hospice encourages family visits and even allows dogs to snuggle up on the beds. Not so sure about husbands though.

And do I now think about death a lot? Of course. I try not to let the thoughts infiltrate my brain constantly but yes, it is on my mind a lot. I was told that the most likely scenario would be that I will just get very, very tired and sleep a lot more. That sounds good to me but if I were to overindulge on chocolate one day and just fade away in a chocolate haze then that would be the ideal way to go. Emotionally, I am not sure if I have dealt with or accepted the prognosis but I do feel quite calm and peaceful most of the time and can honestly say that I have had a very happy life surrounded by terrific family and a few very close friends. I have done more than a lot of people do with their entire lifetime. I have lived in a number of different countries, travelled all over the world, swam with dolphins, went to Russia before the breakup of the Soviet Union, been in a band, made a CD, enjoyed my job, loved, laughed and sometimes cried. And finally became a wife and a mother. Everything I could have wanted.

This is beginning to sound like a goodbye and it is not intended to be one as I am not done yet so I will stop now. Please take from this the points about what could and should be done to help treat cancer patients and share  this information as much as possible, especially when I am no longer able to do it. If somebody else can be helped where I couldn’t then I will be very, very happy. And if and when you do donate to charities, please start thinking about where the big cancer charities are actually spending their money and maybe consider looking at how to fund research into alternative treatments instead.

Yours in health and Michelin stars,

Xoxo

Just Jen

 

Author: Jen

Jen Ainger is a 47 year old cancer babe, previous Pilates instructor and owner/manager of Eltham Pilates & Pilates 4 Scoliosis. Born and bred in Fredericton, New Brunswick in Eastern Canada she moved to the UK in 1993 (and now would like to tell you that she knows her “pants” from her “trousers”). She trained with Body Control Pilates in 2004 and opened the Little Pilates Studio in Greenwich soon after. The studio was sold in 2014 and she saw clients in her home studio until being diagnosed with terminal breast cancer in July 2018, a life-changing diagnosis that set her off on a whole new path in search of healing, a journey being recorded in her blog. Jen is currently living in Eltham, Southeast London with her husband, whippet and 4-year old son. (Jen is now trying to raise money to cover the escalating costs of supplementary treatment as mainstream medical treatment can only offer palliative care. You can help out by donating through her GoFundMe page by clicking on the link in the menu at the top right).

6 thoughts on “What needs to change”

  1. What an inspiring post you’ve written…. not only about Cancer treatment but more importantly about life and the choices one can make to deal with all the ups and downs 💕

  2. Dear Jen,

    You are utterly inspirational: your extraordinary courage is inspirational. You show all of us the way; how to face fatal illness with such poise and dignity; how to avoid the poison of resentment and anger over mistakes that have been made by others, how to squeeze every drop of pleasure out of the present while facing the future with deep honesty, shining with unbelievable vivacity in all your photos. Thank you so very much for writing this blog and allowing me to share it.

    May you be well enough to enjoy your holiday with Charle and Neil.

    My thoughts and love are with you, Caroline

  3. You are a beautiful writer Jen. You are in my thoughts often and I wish you many, many more smiles, laughter and love.

  4. I concur with everything Caroline and others have said regarding your latest informative blog. Thank you for taking the time and effort with updates including the lovely photos with your family. Lots of love, Gill x

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