Getting my head around it

After a wonderful weekend, it was time to head back to nutritionist Xandria Williams to get my CA blood results this morning. Unfortunately the lab in the US hadn’t sent any results yet and so we were no wiser than before. So we spent an hour talking about the various supplements she suggested I start taking. Are there enough hours in the day to take these? Seemed like quite a few especially if this is only the start, the pancreatic enzymes are 30 per day alone!

I told her that I had another meeting with the oncologist in the evening and that I’m considering one of the proposed treatment options. She confirmed that the supplements would be beneficial in any case. I had been asking her to arrange for me to speak to one of her other patients so that I can find out their experiences but she seems very cagey about that. “Patient confidentiality”, “every case is different” etc. It’s a shame really as I just wanted to gain insight into someone else’s way of thinking and their approach to alternative medicine rather than any intimate details.

We agreed to speak again once the blood test results have come through and that I would continue to follow the dietary advice to date and start taking these supplements. I headed over to Trend’s office in Paddington and it was great to catch up – both about work and what’s coming up in the new year – as well as with a few people who I opened up to about what has been going on.

I’ve missed socialising there and will aim to do that more often. I think I’ve recently burried my head in too many books, too much research, trying to find out as much as I can without giving myself or my mind a rest and without doing the things I love doing. Nutrition is key but I don’t want to confine myself to a home-made prison of ‘can’t do this or that’ and need to balance the healthy lifestyle with fun too. A few hours later and after a long overdue catch up with my friend Magdalene, (and the usual laughter that comes with that) it was time again to go back to Dr. Cleator.

The last time we met a week ago, I had walked out of her practice leaning more towards 12 weekly Taxol. Having thought about this for the past week though, I think the prospect of going there every week and the potential side effect of neuropathy (tingling/ change in sensation of hands, feet etc.) put me off. For me, my senses (touch, smell, feel, taste, etc.) are so important. Feeling the sand under my feet, touching or feeling something with my hands – I wouldn’t want that to change.

A few people I know have gone through both EC and Taxol but given the choice between the two, I think I’m leaning more towards EC. The latter is four times every 3 weeks which means I’d be done within 9 weeks of starting. I presented her with a study that showed that Taxol had very little effect in adjuvant chemo for HER2 negative, ER positive cells (mine) and we discussed the pros and cons of both again.

When pushed and asked which she would recommend (if I had no big preference for either), she said EC. I signed a consent form of potential side effects and as we went through it we got to a section that read: ‘General risks of the therapy’ and she ticked various boxes including: potential hair loss, indigestion, etc. and then stopped and said that unfortunately one of the boxes always reads: ‘death as a complication of treatment’. That was… sobering. I suppose you could argue that we all sign the consent that we may never wake up from a general anesthetic each time we have one but seeing this black and white was something else. We briefly touched on the topic of radiotherapy and the fact that the committee had suggested I would benefit from this (whereas she had previously said I wouldn’t) but agreed that this isn’t a decision we need to take just now.

We discussed a start date for chemo and it looks like it’ll be the first week of January – dates to be confirmed. I asked her to re-confirm that she absolutely recommends I have this treatment to achieve the best possible outcomes of a cure. And she confirmed.

I walked out of the LOC feeling a strange sense of relief that at least I have moved a little bit forward. I can’t say that I’m behind the concept of it all just yet but if there’s any slight chance that it will offer me a better overall prognosis, then I’m willing to give it a go.

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Today’s headlines & more healing

Today’s headlines across all newspapers read:
” Getting cancer mostly down to environmental factors, not bad luck”

I’m glad this is making news. Far too many people still have the assumption that cancer has more to do with an unavoidable intrinsic risk. The study, conducted by doctors from the Stony Brook Cancer Centre in New York, disproves the “bad luck” theme, which suggests that two-thirds of cancers may be attributable to random mutations in genes, the risk of which strongly correlates to the number of times a cell divides. So according to the bad luck theory, it is not something that our actions or circumstances can have any effect on.

But now the Stony Brook study argues that there is a link between cancer and environmental factors such as toxic chemicals and radiation to name a few. So then in my mind if this is the case, it means we can do more to prevent it but also to tackle it and reverse it. As with any study like this, I think it’s important to remember that cancer is multi-faceted and very complex but it’s good to see that research is coming out that looks at it as beyond pure chance and luck. If I had seen the headlines a few weeks ago, I would have probably plagued myself with thoughts of all the different things I may have done to develop breast cancer. Seeing the headline today makes me optimistic that if we can take care to reduce some of these factors, we have a better chance of preventing recurrence as well.

Since meeting the oncologist on Monday evening, I had some ups and downs and have continued to read a lot. I’m still making my way through Cancer Concerns by my nutritionist Xandria Williams though finding some of the chapters hard to understand and quite technical but persevering.  I’ve also started reading ‘Mum’s not having Chemo’ which was another title that kept being mentioned in different places. Interesting to see that books written by people who have gone through or going through similar situations all highlight similar clinics, resources and approaches.

My CBT practitioner Kim recommended looking into a different type of therapy called compassion focused therapy. So I went to see Dr. Chris Irons yesterday in Islington for a first session. I’m looking forward to exploring what comes out of this and have a feeling it will prove helpful. I would like to work on developing a ‘best friend’ in me who is supportive, gentle and helpful (compassionate) – both to guide and strengthen me but also to counter the little gremlin in me that preaches self-criticism. 

I came home from the session to find an email from my oncologist to my surgeon with me in copy just recapping Monday’s conversation and to my surprise she also referred to radio therapy as something the committee suggests, even though her earlier view on this had been that I won’t be needing it. Not sure what to make of that and will have to discuss it further. I sent her some further questions on the side effects of Taxol, mainly around neuropathy. 

I felt unsettled by the email and opted to clear my mind with a 5km run. 29.02mins- getting faster! After my run I tried out a 10-minute super hot bath in sodium bicarbonate water. Apparently a good way to detox. I managed to stay in the water no longer than 7 minutes as I was worried about dizziness. From the running and no doubt the bath, I felt hot all night and sweated like a bastard. I suppose all good.

Earlier today, I went to see Andrew Flower in Primrose Hill who is an acupuncturist and herbalist. He came recommended and I’m open to exploring all avenues at the moment. He specialises in support for people dealing with cancer, amongst other things. He was recommended to me as someone who can help support me with regards to strengthening me and reducing potential side effects from future treatments. I warmed to Andrew very quickly. We sat for a long time and discussed my situation including the decisions around chemo or no chemo. He’s very up-to-date with research into the effectiveness of chemotherapy and reiterated something I have been reading over and over again which is that it is for sure effective in certain cancers such as Hodgkin’s disease, testicular cancer and leukemia. He seemed to understand why I struggled so much with a decision. He is not against conventional medicine and pro-surgery but said he’d probably struggle to comprehend the concept of chemotherapy for the same reasons if it was him.

He then examined my tongue and pulse and asked me general questions about health. He said he felt that I was quite tense underneath the calm, composed persona and that this is something that could be subconscious and not necessarily related to the current situation but an underlying thing.

Following more conversations, I had acupuncture done to stimulate the liver function but also balance out the chi and increase mind-body balance. I’ve never had an issue with needles and having hit the right points, my body reacted quite quickly with gurgling sounds in my stomach while the rest of me was covered under a thick blanket of relaxation. Great feeling. We discussed herbs and he has prescribed me two weeks of daily chinese herbs designed to boost my immune system and get chi flowing. Apparently they taste terrible – I don’t mind. Let’s see. Andrew is happy to support me throughout any other treatment I do.

I left Primrose Hill feeling calm and good about yet another way to take my health in my own hands. I think both Chris and Andrew will form part of my healing team.

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Peace of mind and the kindness of strangers

Looking back at the end of last week, I think I worked myself into a frenzy – have always loved this English expression. I kept raising more questions, not getting any answers and stayed being stuck in indecision-land.

Saturday morning’s reiki session with Danira couldn’t have been better timed. We had a long conversation and she was a pillar of strength for me. It felt good to open up, let go, cry, talk some more and finally settle down for meditation, visualisation and reiki. She asked whether I had a small talisman or something that someone might have brought back from somewhere that I could take with me and hold. I didn’t think I had. She then undid her own necklace and released a small cross, a pendant that she had brought back from a holy place in Jerusalem. She put it into my hand and told me to keep it for a while, on loan. I was overwhelmed and accepted. The reiki session was great, I was yet again deeply relaxed and walked out calm and actually smiling. She also offered to come with me to the oncologist session on Monday, just for emotional support. I said I would think about it – how kind again.

She mentioned Professor Jane Plant to me and recommended I look at her book ‘your life in your hands’. In my thirst for knowledge these days, I tend to follow these kinds of recommendations very quickly so I bought her book immediately and started reading.

I left Danira and met up with my friend Stephanie from Paris at Sloan Square for lunch. We spent hours catching up and talking, sharing deep emotional experiences, talking about family and other things. It was wonderful and a very gentle afternoon, just what I had needed. I spent saturday evening relaxed at home, mostly reading the newly purchased book. Jane Plant had breast cancer (five times) herself and as a scientist herself, started researching different approaches to breast cancer. She is a major advocate of the ‘no dairy’ diet – mainly backed by statistics of low breast and prostrate cancer occurrence in South East Asia where dairy has not been part of the daily diet. The book is easy to follow (aside from the biochemistry section on cells) and her own story is fascinating.

Over the weekend, I spoke to two women who had been to the Oasis of Hope in Mexico. The clinic that offers conventional and alternative cancer treatments. When I last spoke to the clinic, I had asked for patient references. One lady, around 70 years old lives in Scotland and first went to the clinic 12 years ago. She had advanced stage breast cancer, refused chemotherapy and chose other methods. She remains cancer free and a big advocate of the clinic. In fact she goes back every year with her son to volunteer. We spoke for a long while about the merits of chemo, about this and that and not just the clinic. She seemed like a genuine, warm hearted person. It was good to speak with someone who had similar feelings to me with regards to different treatment paths.

The second lady I spoke to lives in Toronto. Again we spent ages on the phone and talked about many things and exchanged tips on nutrition. She’s 50 and went to Oasis of Hope about a year ago having been diagnosed with stage 3. For her, it was out of question to have chemo, surgery and radiation. She said while the tumour is still there, it hasn’t grown or spread. She’s managing it… wow. Talk about fearless. She said she has regular blood tests and knows that she’s getting better from the results of these tests. It’s helpful to speak with people who are fearless, you can almost touch the determination you hear in their voice.

Following a lovely xmas house party at friends in North London on sunday, I continued reading and learning and came across an article talking about the merits of chemotherapy in pre-menopausal women: Adjuvant chemotherapy not beneficial for patients with luminal A subtype of breast cancer. The title says it all really. This research was presented in San Antonio last week, in the US, where a lot of oncologists meet once a year. My oncologist also attended the event. Was this a sign? Maybe some new hope that I wouldn’t need the treatment after all?

So today, monday, I had my follow-up appointment with the oncologist Dr. Cleator. I prepared my list of questions and decided to go for a 5km run ahead of the appointment to clear my mind and also get rid off excess nervous energy. I felt  calmer this time.

We had a very good session. She took me through the results of the Endopredict test in more detail and explained how chemo & hormone therapy lower the risk of recurrence etc. I explained why I hadn’t gone to have a portacath fitted while she was away (small operation to fit a port onto your main artery for chemo treatment – it stays there under your skin for the duration of it.) I spoke openly about how chemotherapy just doesn’t sit well with me, how the concept is alien to me and my understanding of health, etc. I noticed once again getting hot flushes on my face talking about the topic. She was very understanding. I also mentioned the CA blood test and asked about hyperthermia treatments. She said that hyperthermia treatments are often used in patients with late stage cancer and in combination with targeted chemotherapy. She knew of the blood test but also knew it wasn’t 100% accurate. I highlighted the recent study that I had found the day before and she remembered the paper being mentioned at her conference.

She seemed impressed by the research and knowledge I had acquired and I felt that we were able to talk to eachother as two people who will team up for a positive outcome. I much prefer this dynamic. I find her genuine, caring and very well informed. She said that she would support me in whatever decision I make ultimately. She does see some benefit to having chemo and outlined a slightly different path which I think I can actually warm to. The option is to receive 4 cycles every 3 weeks of either EC (epirubicin and cyclophosphamide) or AC (doxorubicin which is also called adriamycin and cyclophosphamide). Could these names sound any more toxic? So a total of 12 weeks. With this treatment there are small risks of leukemia (rare), side effects of nausea, hair loss and possible impact on fertility.

The other option is to have Taxol on a weekly basis for 12 weeks. Hair loss is less likely with this, so is impact on fertility and other side effects. It may cause neuropathy but will pass. All in all it seemed like a gentler option to me at first thought. Apparently efficacy is the same in both.

We discussed these in a little more detail as well as her view that Tamoxifen given to women for 5 years who have hormone positive breast cancers. In my case, even a 10-year treatment of this is recommended for good results. I questioned the drug as the American Cancer Society and World Health Organisation labelled it a carcinogen. We discussed this in a bit more detail too.

I asked her whether there was any rush at all to – if I decided to go ahead – start treatment this side of Christmas and she suggested that there wasn’t a rush. Starting early January would also be fine. I will sleep on this.

I feel a massive sense of relief. Both because of the nature of the conversation we had as well as the options in front of me. I’m feeling optimistic!

Mirror mirror on the wall… who’s the bravest of them all?

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Decision time

What do you tend to base your decisions on? I mean the big decisions? Do you follow and then trust your instincts? Do you ask your friends for their views? Your family? Is your decision swayed by fear? By rationale? By heart? What was the biggest decision you’ve ever had to made and how did you decide on one direction over another and did you look back and wonder or did you wholeheartedly embrace the decision?

It’s decision time.. very soon. Following my call with the clinic in Mexico, I went for a second visit with nutritionist Dr. Xandria Williams. She’s known in the UK as one of the best Complimentary alternative medics (CAMs) and she’s based in London. During my first visit, she had asked me to do a metabolic test online to find out how exactly what foods are good for me, how they are digested etc. This was a few weeks ago and I diligently did the test back then, having been told ‘no dairy’, ‘no sugar’, ‘no grain’, almost all vegetables etc. Turns out actually I’m a mixed oxidation dominant.Mixed Oxidizers should eat a truly “balanced diet.” Although they have great freedom in food selection, they must make a point of eating a mixture of the correct foods at each meal.

During my second visit which Mati accompanied me at, we talked about my change in diet since the first time I met her. To be fair, I had – for the past 4 weeks – changed my diet to include: daily green juices, more green vegetables, no bread, no dairy, no sugar, less grains and much less alcohol. She asked how I’ve been feeling and I have to admit that I have felt better than ever before. More energy, more clarity and definitely healthier.

We then discussed chemotherapy in depth.. Her approach would always be non-toxic and based on natural remedies to restore health in the body rather than tackle potential disease. Her approach is not that of a crook but of a biochemist, a scientist, a biologist, a PHD and she has been helping a number of people help themselves. For some reason, this type of approach – even if not supported by research studies of 10s of thousands of people – resonates better with me. She suggested I do a blood test to see what kinds of enzymes, proteins and other things are in my system and then make a plan accordingly. I spoke to her about Mexico and she had not only been there but also met Dr. Contreras who runs the place. It seems that instead of spending a small fortune on Mexico, I could seek similar treatments here in the UK.

She then suggested a blood test that would look at a panel of different things typically found in the bloody if there is any cancerous activity present. This is now at the cell level, not looking at tumors. It seems that conventional medicine only ever hunts a tumor mass and then decides how to get rid off it. Nobody ever asked me about my lifestyle, about smoking, about drinking, nutrition. It seems that in conventional medicine, cancer is considered to be just ‘bad luck’. Really? If that were the case, why wouldn’t we apply the same theory to anything and everything we experience on a physical level? Got a headache – bad luck. God a cold – bad luck.

So today I went to get my blood taken by Biolabs just off Oxford Circus. The sample will be sent to a place in the US to be analysted. This CA panel will show certain characteristics typically given off by cancer cells. The results come back in about a week’s time. In the meantime I have my next appointment with oncologist Dr. Cleator scheduled for Monday.

This evening I was invited to a xmas party on a beautiful cruise liner that slowly took us through the beautiful city of London from Putney to Canary Wharf. I managed to switch off for some of the time and just enjoy conversations with people I hadn’t seen in a long time while enjoying both being amongst close friends as well as people who I I may have never spoken to before in other circumstances. I’m super grateful for this evening, for living in a place that people not only want to live in but live well in. For all the little things that I keep noticing along the way, most days.

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The big C

The big C – not cancer, but chemo.

In the last 24 hours I received a detailed response back from the Oasis of Hope. I had contacted this clinic in Mexico as it kept coming up in different places – at the evening seminar the other week as well as in a couple of books I read. The place was set up by Dr. Contreras, who is an authority on alternative cancer treatments. When I initially researched the clinic, the fact that it integrates holistic and conventional treatments particularly appealed to me. There are many so-called ‘retreats’ and other clinics out there offering natural therapies etc. but this place seemed to take the best of both worlds – conventional approaches (chemo) as well as other treatments.

Following my initial query and a chat with one of their administrators last week, I was asked to submit my pathology report and the results of the recent Endopredict. Yesterday, 3 days later, I received a letter – together with an outline of a treatment plan. The letter read:

“Dear Mrs. Cizgenakad:

I have carefully reviewed the medical records you sent and found that you were diagnosed with a stage II breast cancer  ER+ ( 100%) PR+ Her-2 -.  S/p mastectomy. Multifocal Tumor size 36 and 2/15 LN +

The type of cancer you have is moderately aggressive and in a treatable stage. You are only 41 and all efforts should be made to provide you with the most effective therapy possible to maintain complete remission and there is no question that a mastectomy was the best option to achieve it.

These malignancies have a high rate of recurrence. The standard of care in the UK, and many other countries, to reduce this risk is adjuvant chemo and radiation. This conventional approach is quite aggressive, immune suppressive, and capable of adding insult to injury with very little benefit, about 10% recurrence risk reduction. The type of cancer that you had, your oncologist will tell you, suggests that chemo is very advantageous for you over hormone blocking only.

I suggest that our treatment would substitute the assumed benefits of chemo, without the inherent risks and drawbacks. We have developed a comprehensive non-toxic, adjuvant therapy, our three week in-hospital oxidative protocol with Contreras Metabolic Integrative Therapy (CMIT), Hyperthermia plus our powerful immune stimulating Dendritic Cell Vaccine (DCV) that provides anti-tumor
action to kill any remaining malignant cells after the surgery while, at the same time, strongly stimulating your immune system. The DCV is developed from your own blood and specifically activated to fight your tumor.

This protocol will be followed by a very comprehensive, personalized home anti-oxidative treatment program. Because your tumor is hormone dependent, the home treatment protocol might include a hormone blocker such as Tamoxifen, Arimidex or Faslodex. This regiment works in tandem with the in-hospital protocol to enhance efficacy. After 12 weeks of home therapy you come back to the hospital for a one, or two week inpatient oxidative CMIT and Hyperthermia booster. At this time, we will thoroughly and objectively evaluate results and, if needed, treatment adjustment will be done. This toggle protocol of oxidative/anti-oxidative/oxidative therapy increases efficacy because it keeps the tumor off balance significantly reducing its capacity to develop resistance to therapy. It is because of this novel approach that our results in patients with breast cancer are 2 to 3 times better than those obtained in the US and other countries with
conventional therapies (see our results @ oasisofhope.com).

I hope this information is helpful and we want you to know that we are ready, capable and willing to partner with you in your efforts to regain your health.

Sincerely
Dr. Contreras”

I was impressed with both the tone of the letter as well as the outlined treatment plan that they had sent through to me. The treatment is not cheap of course but what is the price of health? Also, there may be some potential insurance pay out which (serendipity?) comes to almost the exact same amount as the fee of this clinic. So, money aside I explored the feeling of what it would be like to take this approach and decline the recommended route of chemo. It felt good, I felt curious, excited and started researching the clinic and people who had gone there a little more.

In the meantime, my oncologist’s secretary contacted me yesterday to make an appointment to insert the port for the upcoming chemo. I politely declined and said I would like a further conversation with Dr. Cleator next Monday.

In addition to that, I sought a second conversation with a different oncologist this afternoon. She already had access to all my documents and was fully informed. She asked me a few questions about me, my life and then reviewed some of the pathology results again and confirmed that her recommendation would also be chemotherapy. I expressed my concerns and my issues around suppressing my immune system and basically potentially making me ill. She understood these concerns of course and tried to address them. She said that the reason as to why we have seen a big improvement in breast cancer care is due to success in chemotherapy. Various studies have proven that chemo works. She clearly felt that I hadn’t got my head around chemo. I carefully asked her questions about high-dose Vitamin C and possible alternative treatments but being an oncologist, she of course highlighted that these were hear-says and not scientifically proven. “Do you believe in science” – she asked. Well…. yes I believe in science but there’s more to life than science surely.

I asked about sphero, a test that determines which drug is best used for which cells, and she said that not enough evidence had been collected to suggest that this was a reliable test. If it was, then we would have found the ultimate treatment of choice. I suppose that’s true.

I asked her whether she would choose to have chemotherapy if faced with a similar decision and she said she would. Yes there are side effects but they are temporary and even the immune system recovers very quickly (one of my concerns). She also said that, compared to years ago, these regimes are very well managed. In a nutshell, for ‘someone like me, at my age and fit/ strong’, it would offer benefits and may lower risk of re-occurrence, although who knows ‘I might already be cured’. This is exactly what doesn’t sit right. The ‘let’s clear things up just in case’ approach which is so toxic.

We then discussed a couple of regimens, similar to the ones I heard before with slight adaptations. We’re still talking about 16 weeks of more intense dose vs. 24 weeks of lower dose but more frequent drugs. Efficacy being the same.

She had a very kind approach to the conversation and asked me a lot about how I feel. I suppose for that reason, I got very emotional and ended up crying again. She understood that I felt rushed into things, having been told to start treatment asap. I keep thinking that if I had not had my surgery that quickly, I would have only just had it a week ago on the NHS, which means any other treatment wouldn’t start until the new year. We concluded that for a decision to go with their recommendation of chemo, I would need to get behind the idea. I’m clearly not there yet. And why do oncologists seem so scary? Maybe I need to work on this massive fear that I have around the c word. It towers almost higher than the other c word.

I walked out of the consultation both confused but reassured that in the field of oncology, there’s only one treatment path. And then there’s Mexico.

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Sitting on the fence with running shoes on

A lot has happened in the last few days, or at least it feels like it has. On Friday morning I received a call from Dr Cleator’s office telling me that the results of the Endopredict had come in. Anxiety kicked in and an hour or so later I was on the phone to her.

EndoPredict is an in-vitro diagnostic tool that uses information from gene expression levels to calculate the risk of women with early‑stage ER‑positive/HER2‑negative breast cancer developing metastases within 10 years of diagnosis. The test is suitable for use in women without positive lymph nodes, as well as with up to 3 positive lymph nodes.

I had really hoped that I was in a low risk category, which would mean doctors could recommend hormone therapy only and avoiding chemo. My results came back as medium-risk. A score of 21%, e.g. the probability of a distant metastasis within 10 years in patients with 5 years of hormone treatment is 21%.  Not what I was hoping for.

I got very upset when she told me the news and in the same breath said that she’d like to start with chemo this side of xmas. I had a massive glimmer of hope that I would be able to bypass this. She mentioned that she was away for a week but would like me to get ‘prepped’ this week. Urgh…. in other words have a PICC line inserted into my arm or some kind of port under the skin. We would then meet next week to confirm the chemo regime.

I put the phone down, cried a lot and had to take a few deep breaths to calm down. I left the flat around mid-day, met Pix for lunch who was having a pretty rough day too and headed to the airport. The Vienna weekend was booked ages ago and I had been looking forward to it. As I sat on the Gatwick express, I was tempted to do a round-trip back to London rather than go away for the weekend. I struggled to fight back tears for most of the journey but knew deep down that a weekend with friends was probably a good cure. And it was for sure. The minute I met my friends, the laughter started. We had a fantastic weekend in Vienna filled with long walks, mulled wine, xmas markets, art gallery, traditional Austrian food, opera (Tosca), shopping and a lovely and long overdue catch up with my friend Olivia, who joined us for some of the time.

Vienna is a magical city towards Christmas, would really recommend a short weekend there. If I were to describe the city in one word, it would probably be ‘grand’. Not convinced about traditional and totally unhealthy Austrian food or Austrian manners. We found most people to be abrupt and rude at the best of times. The flat we stayed in was beautiful with high ceilings and perfect for its location in Spittelberg. We literally fell into the xmas market as we opened the front door. All in all it was a fantastic weekend with tons of laughter and great company.

Having all slept in the same room (the rooms too were grand, like most things in Vienna), I was not looking forward to going to sleep or waking up on my own again. It really makes a difference to having people there as you wake up as it stops the whirlwind of thoughts that typically come in first thing when you wake up. Still, I woke up this morning and felt like I had a proper break from things. Seems I really needed a weekend away in a different setting with people around me and most importantly a mind-break from it all. A good lesson for me. While it’s good to read, inform, digest everything, I need to find a balance with that and actually having fun!

After a bit of work, I followed up a recommendation from a friend to contact a surgical oncologist. He recommend a couple of oncologists for me to talk to. One of them is Dr. Carmel Coulter.  While I trust Dr. Cleator and her recommendations, I would like to have a second opinion or at least a conversation with someone else. Having researched Dr. Coulter a little, it seems that people especially value her holistic approach to health. I like the sound of that. So I managed to book an appointment with her tomorrow afternoon.

I think I’m still sitting on the fence when it comes to chemo. Prior to the endopredict, I was leaning towards not pursuing this path – both due to my own feelings about it but also the hope that the endopredict test would mark me as low risk. A medium risk is not necessarily something to completely sway my decision but I think I’m slowly coming round the idea that chemo doesn’t have to be this evil thing and that it will help me get better. My client at Billingsgate Seafood School had suggested talking to one of her Trustees who is currently undergoing chemo. So I called him up and we talked briefly. Key words like positive, embrace, this will pass too, exercise, it’s just short term… all struck a chord with me. These words coming from someone who had been told he has around 1-4 years.

After our conversation, I put my running shoes on and headed to the gym for a run. The breast nurses gave me the all clear on exercise and I know that it will be key in the coming weeks – not just for my body but also my mind. While there, I caught up with Jonathan, one of the personal trainers I had an intro-session with weeks ago. I explained the situation to him and he sweetly looked at me and said he’s going to commit to helping me – both with an exercise plan and some nutritional tips.

First run in over 5 weeks and 5km later, sweat dripping, I remembered how wonderful endorphins feel.

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More healing

Four weeks ago today I had my surgery and during my third follow-up appointment earlier, it was also time to remove the plaster that had been in the centre of my left breast. A weird sensation. The area has stitching and some skin glue, quite a lot of skin glue it seems. It’s also strange to see the area where my nipple once used to be. Something I will  need to get used to until more cosmetic changes are made. It seemed somehow easier to manage when it was covered up.

Everything is healing well and the bruising has now disappeared. As always, I had a few questions during the consultation. I noticed something like a tendon sticking out and being quite sore under my left arm, starting from the armpit towards the elbow. Mrs Hogben said that it looks like Axillary Web Syndrome, also called cording. Actually yes, it very much looks and feels like a cord. According to literature on this, cords tend to be painful and tight, making it difficult for you to lift your arm any higher than your shoulder or extend the elbow fully. In my case, it is slightly sore and definitely tight but hasn’t limited my arm movement. Apparently cording can occur a few weeks after surgery so this fits. Researchers don’t quite know yet what makes cording happen but it’ll pass. I was told to massage it quite hard for a few minutes twice a day or so. All good.

I started massaging the cord this evening and heard a cracking noise,- scary but I suppose probably a good thing. Hopefully it’s starting to soften already. A couple of weeks ago, I managed to massage an area away that seemed to have collected fluids so this cord is my new project.

We also discussed further treatments around the breast area in terms of the shape, size etc. and timelines are all dependent on decisions regarding next steps, e.g. chemo or not. On that note she mentioned that she had a copy of the letter from Dr Cleator about my last conversation with her on the topic. I reiterated that I’m still gathering information and waiting on a test. I asked her whether she thought it was an urgent decision to make and she said no. It’s interesting how one can feel so rushed into things, processing through on a conveyor belt with a strong sense of urgency when in actual fact there is no need for that. She gave me the all clear on starting some gentle upper body exercise and has no objection to me exercising otherwise (spin class etc.).

After the appointment and the usual visit to Whole Foods for green juice and salad, I went back to see Danira for more reiki healing. It really must be the slowest and gentlest form of medicine. We started the session with deep breathing exercises, followed by visual meditation and then the actual reiki. Danira started channeling energy by moving her hands above and across different parts of my body. The experience was such a warm, safe and nurturing one. I again saw bits of blue light and my left breast area started reacting  by pulsating with slight stabbing pain. All good signs and reactions. I probably fell asleep for a few seconds at least twice, it’s so deeply relaxing.

After  40 minutes, I got up and felt completely wiped out. Danira recommended lots of rest for the rest of the evening so my body can absorb some of the energy shifts which will take place over the next few hours/ days. Of course I ask myself questions about the healing capabilities of this exercise but if nothing else, with this and other things I’m managing to manifest a quiet and deep place in myself, away from anxiety and pressures. I found myself traveling home on the tube with a level of stillness I haven’t yet managed to achieve in all the various meditations.

Buddha