Read about how I recovered from cancer treatment but how I quickly developed symptoms of cancer recurrence again:
- big adjustments I had to make after radiotherapy and surgery,
- how tripping and awkward situations became part of my daily life,
- my lessons learned when it came to asking for help,
- what happened when I returned to work (too early),
- how I discovered chanting,
- the miracle of new life,
- the devastating news I got after my daughter was born- despite all my efforts.
Recovering from Treatment
Recovering from two surgeries, radiotherapy and lots of physical and emotional turmoil took a while. What didn’t help was that I was very restricted in what I was allowed to do initially with the eye.
Many things that I had always taken for granted became a chore. Doing shoe laces (I wasn’t allowed to bend because of the pressure it put on my eye), showering (only tiny amounts of water in my eye were painful), carrying even the lightest things and obviously anything that required good eye sight (reading, cooking, computer work etc.).
Cycling, swimming, yoga and exercise in general was banned from my daily life for a good while. I wouldn’t have had the energy, which was quite shocking considering that I used to train 15-20 hours on a weekly basis without any big effort.
Even walking was a bit of a challenge because I only had vision in one eye for a good while after treatments. I remember not even being able to distinguish uphill or downhill- unless it was very steep of course.
I often tripped because I misjudged distances, thought a hole in the road was actually a bump and other mishaps that I found very upsetting and humiliating.
The feeling of loss was quite overpowering at times.
Pouring liquids was another thing: once we were in a (pretty) posh restaurant and I took the bottle to pour some wine into my husband’s glass. To my surprise, it ended up on the table instead of his glass! Lesson learned- from then on I always held the glass directly under my nose to make sure this didn’t happen again… The depth perception of my eye seemed to have been affected in other ways, which I found out when we were going for a hike. I couldn’t distinguish between a hole and an elevation in the path, which made those trips kind of challenging.
My life seemed to turned into one waiting game after the next- what I was waiting for this time, after all the treatments, were my biopsy results…
And that was actually pretty nerve-wracking. Based on the chromosomal make up of a tumour, my oncologist would be able to tell me how likely my cancer cells would spread (or maybe had already done so) to other parts of the body.
One important thing I had to learn was to ask for help, which was probably one of the hardest and biggest lessons for me.
Independence, freedom and to some extent also being in control of my life had always been an important part of my identity.
I had always taken great pride in “doing everything by myself” and not needing to rely on anybody. That all completely changed now and although I’ve got a lot better at it, I still find it difficult even now to truly accept when I reach my limits. Learning never ends, does it!
After 3 weeks, the biopsy results finally arrived and I’ll never forget this day: the letter said that “the results of the statistical analysis strongly suggest that your tumour has NOT significantly worsened your chances of survival” and that the chances of my melanoma spreading to other parts of my body were pretty slim.
Of course, my oncologist emphasised that “in medicine, few tests are 100% reliable” but that didn’t take away any of my joy- I was so delighted to be “off the hook” at least in that respect.
Once I started feeling better, the eye was a bit less sore and my energy levels rose a bit, I began exploring options how I could change my life. Yes, you heard it! I wanted to change my life although I had been happy and content with how things went before my diagnosis.
But a little voice in my head told me that clearly I must have missed something or that my body needed a different kind of support that it wasn’t able to fight these cancer cells and just let them grow away.
When I asked my consultant, the answer was: “No, there isn’t really anything you can do, just lead a healthy lifestyle. You just go back to your old life when you feel better.”
A healthy lifestyle? Is that not what I had? I wasn’t a smoker, never did excessive drinking over prolonged periods, was super active, had a decent diet that- admittedly- was sometimes a bit all over the place… but hey, some treats certainly can’t do any harm, can they?
Anyway, I started to ask myself what REALLY a healthy lifestyle was. Coming from an analytical and economics background, I was well used to doing research but quickly reached my limits because I just didn’t have enough knowledge when it came to medical terms.
I wanted to find out more about nutrition as a first step. On I went and found the dietary guidelines of the Irish Cancer Society. What I found was puzzling: According to them, I had to make sure I got calories in (I was a bit on the skinny side then) and eat scones, ice cream, Mars bars, sausages- you name it.
What??? Were they serious or making a joke?
Instinctively I knew that this couldn’t possibly be a good idea for a cancer patient. I told a friend about this who was studying nutrition at the time and she referred me on to one of her lecturers, a nutritional therapist.
And that was my first experience with nutritional therapy. I was so impressed with the holistic approach of the therapist that I knew there and then that this was what I wanted to learn, too, so that I could help myself by gaining all the knowledge I possibly needed.
After interviews and the recruitment process I was accepted on the course and started a few weeks later.
We obviously started with the very basics of nutrition and I very much studied with a focus on cancer from the beginning.
Bit by bit I picked up information and started to make changes to my diet.
In the first few weeks, I learned
- about the different macronutrients and that fat is ESSENTIAL in a diet. Total news to me at the time!
- that I was relying on foods that I thought were healthy like breakfast cereals, granola bars, Jaffa cakes for snacks, coffee to help my bowel movements, lots and lots of fruit (to achieve my “5 a day”) and also dried fruit, “reduced fat” foods, vegetable oils, Indian curry sauce from a jar, tinned tuna till the cows come home- these are just a few examples…
- that my chronic iron deficiency could be related to digestive issues and not to a lack of dietary intake (that was always supplemented with high dosages)
- that I had done well avoiding the obvious pitfalls (Mars and other snack bars, obvious sugar and processed foods, refined carbohydrates) but that I had the hell of a lot of potential for “cleaning up” my diet!
- a lot about bowel movements and that mine hadn’t been right for a long time…
About 5 weeks after completing treatments, I tried to return to work full-time.
In hindsight, this was a rather foolish idea and my employer actually encouraged me to take more time off but I felt good enough that I wanted to give it a go.
Probably I also needed to prove something…
It was a big mistake. The first day was okay and I was given a lot of work that I could do without the computer. I could still only do very small stints at the computer without starting to feel drowsy and queasy.
By the end of the week, though, I was completely wrecked. I had completely overestimated my body’s ability to heal after all that I had been through and I basically was sick all weekend. Obviously not a good idea while trying to reduce pressure on the eye!
I was traumatised by the experience and developed a complete mental block against working on computers. Long story short, I ended up being on sick leave for another 7 months despite attempts to return.
In hindsight, this was a blessing. I completely focused on getting better, learning about nutrition and we were also allowed to do an overseas trip in January, which was just amazing and lifted my spirits like nothing else.
I had also started to practice Buddhism and chanted every day- between 1 and 2 hours. The support from the whole Buddhist community was overwhelming and so helpful.
Chanting allowed me to tap into a mental strength that I had never experienced before. I would never have thought I’d be able to sit still for a full hour and repeat a mantra.
It allowed me to build faith, connect with a universal force and also let go of things that were out of my control. This was something I really needed to learn.
In March 2009, I found out I was pregnant and was in awe of my body. It was wonderful that I had apparently bounced back from all the trauma. I was then able to return to work in the bank, we sold our old house and moved into a gorgeous new one.
All through pregnancy, I worked towards a natural birth and put a lot of energy into practising yoga (yes, I was allowed to do that again, even inversions), hypnobirthing and strengthening body and mind for the birth.
At the end of November, our little girl was born. She was perfect and healthy. Life was good.
Being a new mum brought its own challenges and in January, I knew something was wrong. The old symptoms in my eye were back: flickering (it had never really stopped but got stronger again), floaters, loss of vision. I suspected that these could be symptoms of cancer recurrence.
My consultant reassured me that the scans were clear and that everything was fine. I wanted to believe him but knew by then that I was so in tune with my body that I couldn’t ignore all those signs.
I kept insisting that I wanted more tests and finally, 3 months later, I had some more tests done that were sent over to my oncologist in Liverpool. We didn’t hear back for a while.
Eventually, I decided to call the hospital in Liverpool myself and found out that they had never received my test results. They were transferred immediately and a few days later, I got a letter asking me to come over for a check up as soon as possible.
That was obviously not the news I had been hoping for. Because our baby was still only 6 months old, we decided that my husband would stay at home with her (and somehow familiarise an exclusively breastfed baby with a bottle) and my sister-in-law would accompany me.
When I heard the words “your tumour has grown back in size and you need more treatment”, I can’t explain what emotional upset this caused in me.
I tried to stay strong but I cried a lot more than when I was initially diagnosed.
I guess I felt like a complete failure: I had done so much “work” on my body, educated myself, gone to a cognitive behavioural therapist, had developed a lot of faith and changed in many ways.
But I was also cross with myself that I had known all along and didn’t stand up for myself more. I had let myself down. And that felt miserable.
The ironic thing was that on June 3rd 2010, my maternity leave ended and I was due to return to work. Instead I was having surgery again to insert markers for proton beam radiotherapy (an external type of radiotherapy treatment as opposed to the plaque I had the first time round).
2 weeks later, 3 days before my 30th birthday, I went over to fit the mask for the treatment. Not quite the birthday present I had wished for…
Another 2 weeks later, my husband, our daughter and I travelled by boat to Liverpool for a week of radiotherapy. A slightly different kind of a summer holiday than we would’ve imagined but we managed to do a bit of sight seeing around the area and had a few nice afternoons together.
Compared to the first set of treatment with surgeries, plaque and biopsy, this one was a lot easier. The side effects weren’t as bad as predicted and I attribute this to the supplements and foods I was using to protect myself.
I had decided to do another biopsy because my oncologist was puzzled by the aggressive behaviour of my tumour with this particular chromosomal make up.
He said he had never experienced this before- and believe me, this man has treated many patients with ocular melanomas!
This scared me and we decided to do a biopsy under local anaesthetic. In hindsight, I wouldn’t do it again. It was painful (and I’m by no means a wimp), caused more damage to my poor eye and the results wouldn’t have changed the course of my actions anyway.
I was more determined than ever to dive even deeper into research, learn more and explore the causes of this tumour growth.
I wasn’t prepared to have another relapse, especially with a young baby that needed me. You can read on here.
