Radiotherapy

Three weeks post surgery and it was time to see my oncologist. I had planned to take a friend with me but when the day came, I felt there was something about the appointment that I wanted to handle on my own. The London Oncology Centre will always bring back memories of chemotherapy and of heavy times discussing the cancer and treatment options. For this appointment, I wanted to face the place alone, together with my feelings about it.

We had a long conversation about next steps. First up of course radiotherapy. My oncologist said that this time she couldn’t really see a way around it. I was already prepared for this, following conversations with my surgeon. She took her time to give me lots of details about the treatment and answer any questions I had. I agreed to follow her guidance and have 15 sessions of radiotherapy. She assured me that most people went through the treatment without significant side effects. Apparently the days of burnt skins, blisters and exit points are now over. I still find the concept of having high energy rays so close to my heart frightening. It is scary, but not half as scary as chemotherapy was. And of course, as with most western medicine’s cancer treatments, there are risks of secondary cancers, namely lung cancer. Apparently it is a low risk, much higher risk in smokers. Tamoxifen, of course, also has risks of secondary cancers of the womb. Sometimes I want to despair of the fact that after all these years we are still left with options to burn, poison and cut out cancer.

Talking of Tamoxifen, she also addressed the issue of hormone therapy. The lab results had finally come back and shown that it’s once again 7/8 estrogen and 8/8 progesterone hungry. The results on HER2 were negative again – which was good news. I asked her whether she’d agree that the tamoxifen I’ve been taking for over 2.5 years had basically not worked. While not that simple and it may have slowed the growth of things, it is not doing its job as well as it could. So, with that in mind, we will be having conversations about chemically shutting down my ovaries with a different tablet and monthly injections. Apparently there aren’t that many other options apart from removing the ovaries altogether which seems like a drastic step at the moment. I felt immediately worried about going into some chemically induced menopausal state again. I remember too well how I felt when I had a phase of this for 6 weeks post chemo. I felt all over the place, hot flushes at night and sometimes during the day. I feel upset about the prospect of this again but know that we need to do something. We said we would discuss this in more detail in a few weeks following radiotherapy.

Radio therapy will start at the end of May and will run for 15 consecutive days. I feel strangely calm about this, maybe that will change on the actual day of having the treatment. I’m more nervous about hormone therapy.

I felt heavy and upset when I left my oncology appointment and kept thinking: why is this happening again? Why me? Why now? The same kind of questions I asked myself not too long ago. Luckily, I was heading to a dinner party straight afterwards which was probably the best thing that could have happened. It gave me enough time en route to digest the conversation but not enough time to throw myself into worrying and get into a spin about everything. I had a great evening, followed by another great evening, hosting a Eurovision song party at my place. At one point in the evening, I looked around the room and felt so much Love for everyone and for everything in my life. It really touched me deeply. Grateful!

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Cancer free!

One day post-surgery and I feel great. And most importantly cancer-free! The surgery came and went so quickly. I checked into the hospital at 7am with Mati and D by my side and there was a lot of waiting around for this and that.

Once in the pre-theatre room, a lovely Turkish nurse looked after me and we chatted about Turkey, Istanbul etc. I remember seeing the clock on the wall at 9.45am as the anesthetist injected a painkiller and told me I would feel drunk. Just as I was explaining that I didn’t feel anything, the anesthesia went in and I passed out immediately.

Next thing I remember is waking up in the recovery room, feeling wide awake and chatty. The last couple of surgeries were so different. I was really anxious about not waking up, about the procedure, about everything. This time was different. They soon took me back to the room and I spent another couple of hours eating and drinking and waiting to be discharged. Mrs Hogben came by to tell me that all went according to plan and that she’d see me in a week’s time to check on the stitches. Prior to surgery, they used an ultrasound scan to mark the area on my breast and ensure that enough margins are taken out. She seemed confident that all was taken out.

Meanwhile outside it was the most beautiful day of the year. Super sunny and properly warm. I couldn’t wait to get out of that hospital and into the park. So D and I picked up some food and spent all afternoon in Regent’s Park under the trees, looking up at the blue blue sky, relaxing. It was the perfect recovery choice. Later in the day, a few friends came with food & drinks and we had a wonderful picnic in Regent’s park, chatting and laughing, laughing so much… the best form of medicine.

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Localised!

The magic word! Scans all seem clear – the relief can’t be put into words, neither can the fear that I’ve been feeling over the past few days. It’s a different fear to all others, it’s existential, it’s consuming and it feels loud in my head and heavy in my stomach.

It looked like I was going to wait to hear anything back until Monday as the secretary arranged a follow up for then. Of course I started worrying thinking they would have told me briefly over the phone if it was good news or maybe they’re still collecting scans or maybe bad news needs to be prepared etc Head spinning, trying to figure it out.

I left Paddington to see another client and while on the tube, my phone rang with a number I didn’t recognise. I picked up and heard my consultant’s voice. My heart almost stopped. I jumped out of the tube at Baker Street and eventually spoke to her. She rang to say that he scans have come back fine. Phewwwwwwwww…. apparently there’s a benign something on my liver which is unrelated and they want to look at it on ultrasound tomorrow but she told me not to worry.

Localised – what a wonderful word. The relief is difficult to put into words. I’ve been here before and I can do this again!

Round Two

Three days ago I had my appointment to discuss the results of my recent biopsy. And three days ago, the dreaded C word appeared back in my life. “Its a cancer”, my consultant said, as I sat down in her office with my friend Mirela by my side. “It’s a little bit of cancer, 6mm of it” she said. Fuck. I had hoped and prayed that the little area which had grown over the last six months was fat or scar tissue.

I don’t remember how I felt but Mirela said that my face went yellow. It’s a massive blow to be told you have cancer 2.5 years ago and it felt like another blow, but more of a slap, the second time round.

The 6mm area is right near where the stitches are and exactly in the area where the first lump was discovered. Too much of a coincidence? Probably not. According to the consultant, it may be that some cells were left at the original surgery and that they have grown very slowly. ‘Grown very slowly, which is a positive thing’ – I guess in these situations we hang on to the positives no matter how minute they may be.

Apparently it’s a grade 2 (also better than 3 or 4) and they’re doing more tests to establish the exact type. The initial biopsy shows no vascular invasion, another small mercy, meaning hopefully it is just localised.

How little words like ‘localised’ can take on such a big meaning. We talked about what might happen next and of course the protocol is to exclude that it has spread anywhere else. CT scan and PET CT scans to be scheduled. Deep breaths. I remembered the dread of going through the PET scan 2.5 years ago, the fear, the waiting, etc

One step at a time. I’m hoping that the body scans come back clear. The previous lump was 4-5 times larger, had not spread elsewhere in the body (aside from my lymph nodes). Now we are talking about a much smaller area with no lymphs affected. This is giving me the hope that the rest of me is fine. I mean, after all – I would have had some symptoms right? I feel fit and healthy physically – which is what is so depressing about the whole thing.

I was talking with a friend in Germany and we agreed that cancer is a headfuck. Aside from the physical implications, it really can send you into a spin. Plus there’s this whole stigma attached to the diseases which I don’t think has changed much since the 80s. Also, drugs haven’t changed that much and we are still trying to handle this with the same poison. A friend of mine has researched clinics in Germany and Switzerland which use immunology and other methods to treat people and regardless of what happens. I will consider some time at these places to reboot my body and strengthen it, make a change.

Emotionally I feel strong at the moment. I have had the most amazing support from a totally unexpected place and my friends, work colleagues and family have also been incredible. I feel very very lucky.

And – whatever it is and whatever needs to be done, I will handle it. One day at a time!

Biopsy

Six months ago, an annual MRI showed a small area of a couple of millimetres in my reconstructed breast. The official report by the radiologist said that this area is very likely to be benign but that they’d recommend another MRI in six months time.

Fast forward six months and here we are. The MRI was two days ago and as always a testing procedure. I find it difficult lying on my front with my face to one side, trying not to move and trying not to breathe too deeply. And again, the scanning was interrupted by one of the nurses who came and asked me not to move as much. I guess I was trying to breathe deeply again and tap my feet to the drilling beat of the scanner.

This morning, it was time to get the results. Mati and I went to the breast clinic and waited a little longer as the results hadn’t been typed up yet. Eventually, we went to see Mrs Hogben who appeared very matter of fact when she let us know that the area seen six months ago, had in fact changed and grown. With that in mind, she said they’d have to investigate to see what it is.

I got whisked into the ultrasound room and a familiar radiologist greeted me and explained that he was going to do a biopsy. I started asking various questions (as I often do when I’m nervous in these situations) and he eventually asked me to please be quiet as he needed to concentrate. Four to five needles later, the samples were taken and I lay there… still biting my tongue not to ask more questions.

I think eventually he succumbed to it all and told me that my axilla looked all clear and that he looks at these types of images all day every day and that at first glance it doesn’t necessarily look malignant. But of course he couldn’t confirm anything until the results would come back.

Back to Mrs Hogben’s office and her energy had changed slightly. It seemed more upbeat, although that may have been due to 100 different reasons. In any case, she explained that the results would take 2 working days minimum and that I should come and see her Monday/ Tuesday/ when ready next week.

I asked her about the likelihood of it being a recurrence and she explained that she’d only seen 3 cases in her career of that happening. Sometimes post surgical tissue grows too, sometimes scarring does too, etc

I asked her to tell me what would happen if in fact it was malignant. She explained that it would be taken out as it’s quite peripheral and small and depending on the type etc we would then make any further decisions. I felt nauseous… I so wanted to walk away today and forget about all of this for another six months, but no.

I guess my breathing exercises will have to keep me going until I know more next week and in the meantime I move from being super anxious to ‘we will deal with this’ mode. The waiting game is the hardest!

MRI results

Great news!

I had a call last week from my consultant’s secretary to tell me that the MRI results were all fine apart from one little area that showed up which they believe might be scar tissue. I was hoping for an ‘everything is totally fine, see you in 12 months’ message but I was so relieved to hear that the other breast remains healthy and they don’t think the MRI results are anything to worry about.

I followed the news up with a meeting today as I had questions on where this area was exactly and why they think it’s benign. As always, I want as much information as possible to leave no questions open.

I’m so glad to have found Mrs Hogben as my consultant. She is such a clear communicator, personable, listens and engages on a level that I understand well. We sat down and she pulled out the letter from the Radiologist. It said that the right breast and axilla remain totally normal. Apparently on the left hand side and possibly correlating with scarring reported on recent ultrasound scans, there is a very small (2.7mm) focus of enhancement. “This shows high signal on the pre-contrast T1 sequence and is therefore very likely to be benign”. I’m SO glad. As this wasn’t present a year ago, they would like to do a follow-up MRI in six months time. She said she is absolutely not worried and trusts the radiologist (one of the best in the country apparently) implicitly and since he’s also not worried, she is even more confident that it’s benign.

In any case, I’m over the moon with this news and will put any worries to one side at least for another six months! As one of my friends put it recently:

“I wish I could tell you the paranoia goes away or gets better, but if it does it has not happened to me yet. Take comfort in the fact you are getting top notch medical care and that your doctor will tell you when you have something to worry about. And if you do, then you gear up to go to battle again. You beat cancer once already, cancer is your bitch.

You know who loves you!”

 

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Does it ever get easier? 

I used to love autumn. I still do, just maybe not in the same way. With the arrival of September and summer days coming to an end, I knew it was time to schedule my annual check up and scans.

I’ve had such a wonderful few months of travel and of being a little more free from this worry that often hangs over me that breast cancer might return. 

A couple of weeks ago, I knew that I would have to schedule an appointment. Instead, I took up running 3 times a week, maybe to distract me, to run away from things but it had the opposite effect. I started feeling more wound up and exhausted. Cancer is such a head spin. I found it hard to push away thoughts of doom and gloom, even started to notice some lumps and some pain to my breast. During the run up to my scans felt like I was on hold, with no motivation to make any plans or schedule anything that I could look forward to. 

I stopped running and scheduled the appointment. I remember how anxious I felt last year going through the scans again and thought that surely this year it would feel a little easier. I can’t say that it did. The day of the scans arrived and I was a bundle of nerves. I guess my surgeon knows this now and knows how to handle this.

So grateful that Vic came with me and we sat down for a pre-chat, I told her my worries and that I had noticed some areas near the implant that might not seem right. She examined me thoroughly and said that it all felt absolutely normal and that she wouldn’t expect anything bad to come out of the scans. 

Next up was the mammogram. I would have preferred to skip this and go for the ultrasound and MRI but she convinced me that all show different things and she wanted to be as thorough as possible. I had forgotten how uncomfortable the mammogram was- ouch! Really? Has technology not moved on from literally squeezing a breast between two x-ray plates to the point of pain?

Next up the ultrasound to check the areas around the implant. The radiologist was a sweet guy I remember from last year and he also remembered me for being anxious. He calmly talked me through what he was looking at on the screen and after checking both side and comparing images with last year, he confirmed that all looked fine.

I immediately saw my surgeon after that who re-confirmed this. What an unbelievable relief! Probably the biggest relief I have ever felt – apart from last year after the scans. It’s an indescribable feeling. Like you’ve been given a gift. We hugged in a big embrace and she asked me to stay positive about the MRI which will take place in 10 days time. I asked her whether it would ever get easier, maybe after 5 years or longer? She didn’t think so. I’m clearly not the first or only patient to be this anxious. 

As I walked out and turned my face towards the warm autumn sun, I felt so alive and full of joy, ready to celebrate this little milestone and with optimism that the MRI will work out just fine.

Lessons in letting go

It’s been a month since my trip and I often close my eyes, transport myself back, smile and feel calm. I joined over 20 people who came from different corners of the US on a Yoga retreat in Cuba. I was nervous initially – both about the long flight on my own as well as not knowing what to expect, what type of people I’d be meeting or how my days would pass. I have to say that it has been one of the best things I’ve ever done.

I had a wonderful week starting and ending each day with gentle yoga, healthy, organic meals throughout the day, beach walks, connecting with people from different walks of life and explorations of Havana. Having gone through last year’s experiences, Cuba was a lesson in ‘letting go’. Letting go of things I can’t change or have no influence over. In Cuba this typically meant letting go of the fact that taxis were booked and never turned up, no online connection and other things that we take for granted in our normal daily lives that just aren’t a given on the island. On a more personal level, I worked on letting go of the upset and anxiety.

Not being online all day every day has been a real eye opener. Conversations with people were no longer interrupted and no longer centred on the latest news or latest posts by other people. We only ever grabbed our phones to take photos. It made me realise that I spend every day obsessively checking and communicating via my phone. Having gone through this online detox, I have vowed to connect for work but otherwise leave my phone at a distance.

It was also good to disconnect from the life that is so familiar to me. Witnessing a totally different culture, which thrives on music, dance, laughter and Love rather than material possessions. It was a unique experience to meet Eduardo Pimentel, the Godfather of Cuba and not only take part in his yoga classes but also receive a one-to-one session from him. Some of the things he pointed out to me will stay with me for life.

Havana itself seems to be a twisted dreamland of poverty and beauty stuck in a different time zone. It really is a place to get lost and immersed in. I loved every minute in that city.

Taking part in daily yoga sessions that were less focused on physical exercise but more on mindful spiritual practice allowed me to completely chill out and silence my mind. Our two Yoga teachers brought a kind, nurturing, gentle feel to each practice as well. For the first time in over a year I felt really at peace. Cancer, cancer treatments, tests, cancer scares,- all of that seemed a million miles away. I would like to be able to bring some of that feeling back from time to time.

Since returning from Cuba, I’m continuing my regular yoga practice and healthy lifestyle choices, and I feel well physically and more grounded mentally.

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Joy

If you had told me a year ago that there would come a time after diagnosis and treatments when every other thought wouldn’t evolve around mortality, cancer, being ill and if you had said that this would be towards the end of 2016, I never would have believed you. 

I’m more and more aware that whilst often in the back of my mind, I’ve started to really find joy in things again. The fear may still be there, but doesn’t always have to dominate. Maybe it is also this fear that keeps me on guard, keeps me living more mindfully when it comes to choices, nutrition and lifestyle.I just finished reading ‘When breath becomes air’ by Paul Kalanithi. A heartbreaking, emotional and interesting read. Many parts of it struck deep chords.

Since the diagnosis, I find myself in a twilight between wondering about life, meaning, time, death, love and between being sucked into daily london life. I feel good physically and mentally too. 

Yet, the time coming up to Christmas so starkly reminds me of the turmoil I went through only 12 months ago- tormenting whether to have chemo or not. Whether to take that tiny bit of percentage to prevent recurrence against a backdrop of poison being injected into my body. Sometimes I think back and can’t believe that I actually went through everything.

As I ski down beautiful, soft snow and look up the majestic alps in Courmayeur, breathing in the freshest mountain air, I feel alive and grateful. 

What is urgent

What does urgent mean to you? Something that needs to be done straight away? Something that takes priority over other things? Is anything ever really urgent?

Following my six monthly consultation with nutritional therapist Jo a week ago, I had a blood test done at my local GP surgery this Monday. As I’m now taking a new set of supplements, which amongst other things will work on strengthening my gut and thereby my immune system, Jo recommended a blood test to look at inflammation markers, Liver function, Renal, all the usual full blood test results with an addition test for Vitamin D.

Blood test went smoothly and I was told I’d have the results in 4-5 days time.

A day later and just as I was coming out of Yoga, I had a voicemail from the GP practice. It said to contact the practice for an urgent appointment. It was as though someone had flicked a switch to ‘panic mode’ and I suddenly felt anxious. So I called the reception and they confirmed that the GP had asked them to make an urgent appointment and asked if I could come in at 3pm that same day. Sure I will. I put the phone down and thoughts started racing. I tried to use my breathing exercises to calm down but couldn’t quite shut the voices up in my head. What could possibly be urgent about this type of blood test? What could they have possibly found?

I called Jo for some re-assurance and she said that some levels may be slightly off-keel following the chemo earlier this year. This helped calm me a bit.

3pm came round and I went in to see the GP who was on duty at the time. I had never met him before. I sat down and he said: ‘What can I do for you today?’ I starred at him in disbelief and told him that I’d been asked to come in urgently to discuss my blood test results. He looked a bit confused, then opened up my file, asked a couple of questions on why the blood test was done in the first place and finally got to my test results. Vitamin D levels great, inflammation markers all good, Liver function test good, full blood count including my white blood cells good (doubled from May which is great) and calcium levels within the bone profile all good. The only thing he said was slightly raised was a new item that they started testing more recently called ‘Blood ionised calcium’. He said that as overall calcium levels were okay, he wasn’t worried but that he’d like to take another look at these values in 2-3 weeks time. He didn’t want to worry me but mentioned that breast cancer can move to the bones, etc. so it’s important to keep an eye on these results in general. He wasn’t quite sure though what the meaning of a raised ionised calcium level really meant.

I asked him to please make a note on my records to never ever call me again and say that something is urgent unless it really was urgent. Given my background, surely they could have been more sensitive or thoughtful in their approach. He was very apologetic and said that he often marks things as urgent to make sure reception actually make the appointments. Unbelievable.

I left with a bit of worry in my mind about this ionised calcium but have decided to put it to one side after a conversation with Jo and see what the next test results will bring. In the meantime, I’ll probably have a slight allergic reaction to the word ‘urgent’ – at least for some time to come.

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