When active treatment was complete, I felt de-railed and abandoned after the tight regime and monitoring of chemotherapy. It was like feeling around in a dark room for something familiar to grab hold of. This was the inertia period. The aftershock recovery took as long as the treatment. I felt displaced about where I belonged for reporting any health concerns: am I still a cancer patient or do I see my GP? In full acknowledgement of my risks and anxieties, I agreed a 2-3 week rule with my GP for reporting concerns (I think this protocol has now become the norm). If I became concerned about any general aches and pains, I agreed to observe for 2 weeks to see whether it goes away, gets worse or stays the same before consulting my GP. I found having this rule helped me to manage my self confidence with trusting my body again after it had let me down so badly. I also accepted complimentary therapy sessions and clinical psychology to help me to relax and manage my thoughts and anxieties. I strongly recommend this. Having cancer is like having a stalker. It appeared from nowhere, tried to kill you for no apparent reason and you’re afraid that it’s still out there waiting for you to drop your guard. Paranoia is the new fragrance, utterly seductive with delicate hints of over-reacting.
It is a sad truth that we have found ourselves here in the world of breast cancer and one of the hardest things to cope with is not knowing what caused it because if you don’t know what caused it you don’t know if you can prevent it from coming back. I don’t feel I did anything wrong in any self-loathing fashion but I feel that I may have a sensitivity which needs to be addressed: OESTROGEN (or ESTROGEN if you’re from the USA!). I didn’t want to take any chances so I made adjustments based on the latest research which I trawled the internet for. As it turned out I made the best decision opting for a healthy lifestyle after cancer. The evidence has been mounting that this not only reduces recurrence risk but also lymphedema risk, drug side effects, menopausal symptoms and improves energy levels. No guarantees that you’re cancer is not coming back but enough positive pointers for me to jump onboard anyhow!
It’s important that you decide what changes you want to make and be satisfied that you have done enough and then get on with living again. A report from World Cancer Research Fund (WCRF) confirms this research and here is their advice for breast cancer survivors. There are a number of health tools on their website which you can use to do a self-assessment: https://www.wcrf-uk.org/uk/here-help/health-tools
I decided to maintain a positive outlook despite being told I was high risk for recurrence. I realised early on this outlook improved my quality of life every day whereas being negative did nothing to improve my health or quality of life. Don’t get me wrong, I still had dark thoughts and meltdowns at times but didn’t stay there for too long. I decided choosing hope (whether real or false) was psychologically better for me than choosing no hope. No hope felt like giving in and I didn’t want to give in. I focused on all the things I was grateful for in my life and the things I wanted to do in my long retirement. I then went about doing those things now instead of putting them off to some ideal time. For me this was about making time for art and creativity and making a space in the house for this to happen; rather than shutting off that side of me I chose to allow it now. I tried meditation but that didn’t work for me, however, I found guided meditation and active meditation did. I use ‘guided imagery meditation’ to relax and Maya Fiennes “Kundalini Yoga to detox and de-stress” DVD. These workouts were particularly helpful after breast surgery healing (both mentally and physically). This DVD continued to be my Sunday morning ritual where I had quiet time to reconnect with my body and work on staying supple. Something I started during chemotherapy which I continued is regular Epsom salt baths with added aromatherapy oils. I found this very relaxing and helped with aches and pains from cancer treatments. If none of that works you may need one of these: Click Here
I realised the importance of getting closer to nature for relaxation and continue to keep this a priority, going for regular country walks and observing nature through photography. I refound my love of art and in 2020 launched my Thoughtful Bugs range and published a book to help others going through breast cancer. I’ve built exercise into my daily routine by walking daily. If you take the car to work you can always park further away from the building to push yourself to walk more. I’ve moved away from chemicals more and continue to replace household products with natural products.
I joined a clinical trial and the good thing about clinical trials is the extra monitoring you receive as well as putting something back into the breast cancer movement for the future. You need to start thinking about clinical trials before you finish treatment and can discuss this with your oncologist. If there are no suitable clinical trials available at your hospital you can search for one elsewhere but will need to be referred to it from your oncologist.
Here is where you can find clinical trials available:
or here: (USA drug companies run some trials in Europe)
Here is a list of re-purposed drugs being trialled:
I read a great deal on nutrition as I feel looking after my healthy cells is very important for swinging the balance in my favour. I stopped eating dairy products and alcohol since diagnosis and continue to do so. This was a very personal choice which does not suit everyone (my decision to ditch dairy was based on the research I’ve read on Hormones and IGF-1 and IGF-I&II which dairy contains). A 2020 publication cautions against dairy for breast cancer: https://pubmed.ncbi.nlm.nih.gov/32095830/This article suggests there may be a reduced risk for ER+ pre-menopausal women consuming dairy but I would like to hypothesise this may be due to the protective effects of Tamoxifen on IGF1 rather than the dairy itself. IGF1 being blocked by Tamoxifen and Metformin is also pointed out by Jane McLelland in her Metro Map, How to Starve Cancer. I substitute with my favourite plant based milks which are soya, oat and hazelnut. There are excellent vegan alternatives available now so there has never been a better time to avoid dairy and still enjoy the same food experience. I don’t eat meat and the majority of my diet is whole food, plant based. As an alternative to eggs, I use chia seeds in baking and I make “scrambled [v]egg” from silken tofu and add a bit of turmeric, nutritional yeast, black pepper and olive oil and heat gently in a pan. I mostly avoid processed and refined foods as much as possible (white flour, white sugar). I have increased my fruit and vegetable intake, in particular raw. I avoid eating large meals late on and usually eat lighter vegetable based meals if I go out in the evening. I drink Green Tea, daily (3 strong cups) and Oolong tea. I try to incorporate only natural sugars (stevia, agave, inulin) which are compatible with a diabetic diet (and low GI). I am not perfect but aim to be 90% good with my diet (someone asked what my 10% bad includes and it’s generally white flour, potato and products containing sugar, which is hard to avoid, although I think I’m actually doing better than 90% good most of the time!). There are so many do’s and don’ts out there, I think its possible for people to develop an eating disorder after cancer treatment. I’ve used the following mobile phone app (Dr. Greger’s Daily Dozen challenge) to keep track of my daily healthy eating habits – its a simple checklist to remind me to keep eating all of the good things every day: https://nutritionfacts.org/daily-dozen-challenge/
Healthy Lifestyle is important and may reduce recurrence risk by about 25% which I consider worthwhile. Lifestyle has too many factors at work to try and measure everything individually (including external toxins which I can’t control) but I can have some control and can benefit from improved energy levels. Being on medication is an increased burden on the body so eating healthy can help to counteract this. The great news is that I don’t have to wait for a clinical trial to see if broccoli and pineapple are poisonous. I can eat them freely right now! Check out my malnutrition page for more information.
Alcohol is classified as carcinogenic by WHO and WCRF. If certain foods and alcohol are detrimental to my health then I no longer view them as a pleasure anyway in the same way a diabetic wouldn’t regard consuming sugar to be good idea. There are excellent alcohol-free alternatives and I regularly drink alcohol-free red wine; ‘Rawson’s Retreat’ Cabernet Sauvignon is my favourite, it’s nice and dry and should be naturally rich in polyphenols and resveratrol. Drydrinker.com have an impressive selection of alcohol-free drinks.
As well as my Tamoxifen prescription, I take daily low dose gastro-resistant aspirin (75mg, reducing to half a tablet per day after a year) to counteract the thrombosis risk of Tamoxifen and also Clarityn Loratadine (10mg) anti-histamine to counteract the aches and pains from Tamoxifen. Loratadine is also being researched for anti-metastatic properties in breast cancer. (Always ask your consultant before taking any additional medication and double check interaction information here: https://bnf.nice.org.uk/interaction/ or here: https://www.drugs.com/)
It’s worth noting that Tamoxifen and Aromatase Inhibitors are metabolised by the CYP system, and I avoid anything which interferes with CYP metabolism, which includes grapefruit. Also, valerian *may* not be taken with anti-oestrogen medications, however, this research is being challenged) More encouraging research on valerian here
I was on the Care Oncology Clinic (COC) Protocol for 3 years after finishing treatment. On the COC Protocol I took:
Metformin 500mg (prolonged release)
Atorvastatin 40mg (reduced time 20mg after first year)
Mebendazole 100mg (3 months on, one month off to keep liver/bilirubin level normal)
I didn’t take supplements during active treatment. I took them for a couple of years afterwards though and still take a few (these are listed at the bottom of the cancer metabolism thread to give context). I never took more than the recommended dose and didn’t harm myself in doing so. The only supplements which are generally recommended are vitamin B12 for vegans, vitamin D for all during the winter months and folic acid during pregnancy. It’s always preferable to get all nutrients from a balanced diet.
I check for known herbal interaction updates here:
I also keep an eye on research updates from the following websites: Nutritionfacts.org and foodforbreastcancer.com and Canceractive.com
I like to keep up-to-date on the latest breast cancer research projects here: http://breastcancernow.org/breast-cancer-research
Returning to work
The BCC BECCA app was really helpful after I’d finished treatment as I felt the need for continued reassurance and connection to the community whilst pursuing a “normal” life again:
Here are two articles from Marie Ennis-O’Connor giving good insight into returning to work after treatment and I made a small contribution to the content of part 1:
Initially I had general health check ups with my GP, including a fasting blood test for glucose and cholesterol levels. Keeping Body Mass Index (BMI) within a normal range reduces recurrence risk. It’s also important to check your breasts regularly and this app: Breast Check Now helps you and allows you to set alarm reminders or, alternatively this website allows you to set text reminders: https://coppafeel.org/remind-me/
I found the BCC ‘moving forward’ information useful:
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Disclaimer: I am not a medical professional. I do not claim that anything which worked for me would work the same for you. This blog is no substitute for the advice of your doctor. Always seek medical advice if you have any concerns. Always check with your consultant before taking any supplements. This blog is my personal journey and a journal of how I coped. I do not take any financial incentives from any products mentioned.