I was diagnosed with Stage 3 Triple Negative BRAC1 Positive Breast Cancer in August 2019. Being given this diagnosis was like being slapped in the face with a double decker bus. I had tried to prepare myself for the worst but I don’t think you can ever prepare yourself for the shock and devastation of being given such a diagnosis. What? I am only 31, I haven’t even dated yet, will I ever be able to have a family, am I going to die? So many thoughts and emotions went through my mind, whilst being given information booklets regarding treatment options and the type of cancer I had. It was all so overwhelming. I cried but on the whole, managed to keep myself in check.

I underwent neoadjuvant chemotherapy with EC Carboplatin/Paclitaxel, starting from September 2019 until February 2020. The chemotherapy only had a partial response and the tumour started to grow back at a greatly accelerated rate almost immediately after treatment was completed. I had a lumpectomy in March 2020 to remove the growing tumour and was told that the surgery was successful and I was cancer free. I was subsequently told 7 months (and a huge regrowth of the tumour) later, that although the tumour had been removed along with removal of extra unaffected muscle tissue around the tumour for good measure, the cancer was most likely not completely removed, as it was attached to the chest wall but that clear margins had been made.

I had been scheduled for a double mastectomy, which was cancelled a week before surgery due to COVID-19. This gave me time to reflect and I realise that had I undergone this surgery to remove both my breasts, it would not have prevented the re-growth of the tumour. I would then have become a mutilated cancer patient! I have discovered that there are cases where women have had the mastectomy and then suffered a recurrence. On weighing the pros and cons in my personal situation, I declined the surgery altogether, opting for a holistic approach.

I had dose-dense (very high dose) chemotherapy and I had an allergic reaction to the Paclitaxel (which I now understand was a trial), administered weekly for 3 months. Every time I was given this drug, hydrocortisone and Piritone were administered beforehand. This added to the weakness I felt after each treatment. I experienced horrible side-effects apart from the usual nausea, diarrhoea, hair loss (I still have patches on my head that have not started to grow back, 10 months after my last chemotherapy), loss of appetite due to changes in taste and weight loss. I also experienced symptoms that some of the nurses had never seen before, such as dark grey/black spots on my tongue, hands and feet. I also had very severe skin reactions on my face, right hand, legs and heels. My skin literally peeled off. The areas were left very red, raw and itching with a burning sensation. I experienced neuropathy (nerve damage) and pain in my fingers and toes. This was so severe that I could not hold a pen to write without pain. This also made walking difficult and some of my toenails fell off.

My ovaries were significantly damaged and I began to experience early menopause. I had to have several blood transfusions before and during treatment, due to anaemia, which I have been struggling with since 2016. This anaemia was exacerbated by the chemotherapy. Towards the end of this treatment, I felt as though my body was dying and I knew it was reaching its limit.

Chemotherapy has been proven to make certain tumours more aggressive, which is exactly what has happened in my case. In less than 4 months since completing treatment, I have a recurrence in the same location, significantly larger than the original tumour. This tumour has grown back in a very short space of time, at an accelerated rate. The oncologist has stated that the tumour is inoperable due to chest wall fixation, so chemotherapy is the only option they can offer me with no guarantees whatsoever. After everything I had been through, this was a devastating blow. How can it come back so fast? Has the stress I experienced whilst living in a toxic shared accommodation played a part? There was a key fob entry, a checking in and checking out board, my time in the bathroom and kitchen where I had to cook food from scratch due to new dietary requirements were timed and I was chastised for starting my tenancy as a working person, and ending up as a "home all day using up electricity" drain.

During treatment, it wasn’t possible for me to move in with family and because of the toxic environment I lived in, it wasn’t possible for friends and family to stay with me either. For the majority of my treatment, I had to manage on my own, which was soul-crushing at times, taking public transport for appointments and treatments, then taking an Uber after treatment if there was no-one available to pick me up because I was so weak.

I was in constant touch with family and friends but still felt lonely at times, since they could not be with me physically. I can’t tell you how this felt. You are at your weakest but you are forced to be strong and manage because it is not possible for anyone to be there to help with basic day-to-day chores. I tried to be strong and positive especially for my friends and family, because I know it is not easy to watch those we love suffer. I am truly grateful for the love and support I have received (and am still receiving) throughout this difficult period of my life. Family and friends gave me a lot of emotional and financial support, they helped me with food shopping and I will be forever grateful for this. I still felt really low at times though, especially when I felt the weakest and it was not possible for them to be with me. Thank God for video calls!

It was a difficult decision especially because of family and friends, but I am convinced that I will not survive another bout of chemotherapy and have made the decision to not have any more chemotherapy, based on the results of my first experience.

I have made a lot of lifestyle changes and received help from a holistic practitioner, as well as women who are also going through similar journeys, which has revealed how lifestyle and nutrition therapy can help in the various pathways the body needs to implement and keep balance to enable healing. Since making these changes, I have seen improvements and evidence that my body has started to heal from the effects of the chemotherapy treatment. My hot flushes are less frequent and my menstrual cycle has started again, which gives me hope that one day I will be able to meet someone, have a relationship and have children naturally. Certainly, if I have more chemotherapy, I know this will absolutely never happen and it would do more damage to my body than good. The side-effects I experienced were so extreme and my body so weakened that I do not feel I can take any more of that type of treatment.

My goal is to be as healthy as possible and address the things in my life that I need to, in order to help enable my body to heal. I have a strong desire to address the root cause of my health problems. I understand that stress can also be a major factor and I have made moves to change that, which includes moving out of a toxic shared house situation in London. I now live by the sea in a bungalow, where I can convalesce and work from home. Although I am on a shoestring budget, I already see a vast difference in my mental well-being. My wish is to be able to continue with the treatment I have started and be completely healed.

I have already undergone treatments including Intravenous Vitamin C, Far Infrared Saunas and purchased supplements with the help of friends and family. I have made good progress with my holistic chiropractor who is absolutely fantastic, monitoring and testing which parts of my body need support. Without help, the cost to get more targeted treatments is too high though for me to continue. I have been given a prognosis of 1 year to 1 year and 6 months to live "without chemotherapy", so I have a great sense of urgency to restart these treatments as soon as possible. In the meantime, I am doing everything that I can to be proactive and productive. I have started working again from home part-time, so that I can get back to a bit of normalcy, after being off work for over a year. If I had gone down the chemotherapy route I would not have been able to work at all. I work for the NHS, supporting the Dietitians in the community, so I feel that my experiences will help me to do a better job, supporting patients in similar difficult situations as myself.

After hearing this latest prognosis, I didn’t feel fear. Understandably the fear family and friends felt after I shared it with them did affect me and I wavered momentarily, wondering if I was making the right decision. I really believe I am doing the right and best thing for me. I have done my homework. This thought helped me let go of that fear and be positive. Now I am moving forward and learning a lot through the process.

Holistic Treatment Options and Costs

Intravenous Vitamin C Therapy (G6PD blood test required cost £100)

Cost of IV C for a year having 1x 50g a month is £2,400 but I will probably need to have it more often for a few weeks and would have to increase the dosage to follow the protocol that has been tested and shown to be most effective (i.e. Riordan protocol which is for a year). Each session of 50g is £205.

Far Infrared Sauna – 2 sessions a week, cost £15 per session (special discount for cancer patients at Health Fusion Clinic in London).

Colonic Hydrotherapy – 21 sessions to get right through the entire colon. Cost £90 per session depending on clinic.

Coffee Enema Kit – Cost £19.95.

Ozone Therapy – Cost £1,500 for 10 sessions

Hyperbaric Chamber Therapy – Is a highly-pressurized room or tube where a patient is given pure oxygen to breathe. The air pressure in these chambers is three times higher than normal pressure outside. It has been approved to treat several conditions and enhance the healing of the body. Cost £100 per session (recommendation between 20-40 sessions depending on the need)

Supplement costs

Phyto Science Crystal Cell Stem Cell supplement range, 1 year supply – Cost £4,800.

6 months Well of Life Ultimate Detox Bundle – Cost £500.

90 For Life Yongevity Healthy Body Pack – Cost of 1 year supply £2,039.40

Imortalium (helps to extend life of telomeres)120 bi-layer tablets – Cost £86.99

Trypsin enzyme therapy – 8 month supply of the supplement Nutricology Pancreas Natural Glandular cost £153.30

Green Bee Propolis – Cost of 1 year supply £540.

Cannabis Oil with full spectrum and a 5%-30% THC administered rectally. Alpha Green – Cost of 1 year supply £696

Magnesium Glycinate Pure Bio 180 capsules – Cost £34.97

Organic Turmeric 750mg 345 capsules – Cost £9.99

Clove Tincture – Cost £6.65

Milk Thistle, Elderflower & Thyme Tinctures – Cost £4.99

Gentian, Black Walnut Tinctures – Cost £6.65 each

Bacopa Monniera (BA6) – Cost £41.99

Homeopathy: Tin D8 – Cost £4.25

Organic Colostrum 120 capsules – Cost £39.99

Liposomal vitamin C 250ml bottle – Cost £34.99

Oxygen Elements Max 30 ml bottle – Cost £25.99

Pau D’arco 120 capsules – Cost £17.99

Evening Primrose Oil 180 soft gel capsules – Cost £13.95

Methyl Folate 60 capsules – Cost £12.30

Organic Chorella 300 tablets – Cost £14.94

Probiotics:

Saccharomyces Boulardii 60 capsules Pure Bio – Cost £39

Terra nova Microflora Complex 100 capsules – Cost £24.83

Supplements that build up natural killer cells in the body:

Life Extension NK Cell Activator, 30 Vegetarian tabs cost for 1 month’s supply £28.98

Enzymatic Therapy Cell Forte Max-3, IP-6 and Inositol with Maitake and cat’s claw, 120 Vegetarian Capsules cost £46.99, can take up to 16x capsules a day for maximum support.

Tools to monitor progress

Chiropractor: I have spent £245 so far for 6 sessions, further sessions cost £35 per session.

Thermography Thermal Imaging – Cost per session £255, follow up £230 every 6 months.

Certain blood tests can also be done to monitor progress like C-Reactive Protein to monitor inflammation levels.

RGCC Oncotrail Blood Test, measure circulating breast tumour cells (recommended to do every 3-6 months) – Cost £602

Please help us save Paulyn’s life. Your donation will be greatly appreciated and we look forward to and hope for your kind support.