Under review

It’s been a while since I last posted an update.

I had my July follow-up with the oncologist who wanted to see how things are going with Tamoxifen. I mentioned the concerns about not being able to get my words out properly, the forgetfulness and the inability to focus with that slight foggy brain feeling. She said that it might take a while for my body to adjust to the treatment but also suggested that these might still be all the after-effects of the chemo.

I decided to switch the times at which I take the pill and it seems to have made a difference. When I first started, I took it in the morning with breakfast so that I’d be able to monitor any side effects. Now and for the past few weeks, I’ve been taking it last thing at night and haven’t noticed any side effects. Very grateful. I do feel groggy in the morning and it’s very difficult to get out of bed, but it’s preferable to brain fog during the day.

The last appointment with my breast consultant in July also went well and she asked to see me again in the autumn when my annual mammogram on the other side is due.

With all that happened in the last few months, I’ve been craving to be out of London and by the sea. So, a trip that was booked a while ago to the Greek islands came at the perfect time. 10 days of pure bliss on the Cyclades islands of Santorini and Paros. Such beautiful places – no idea why I hadn’t explore that part of the world before. I ate so well – fresh fish from sea to plate every day accompanied by vegetables or salads. I could have easily stayed there all summer. Being in these beautiful, serene surroundings has given me some space to process some of the things that have happened.

I feel like a lot of things are currently under review for me: where I live – both my flat and London, how I spend my time and with whom, work and future plans. I have always enjoyed my job and I’m proud of what I’ve achieved over the years but I feel restless. I feel like there is something else I need to explore in addition to what I’m doing. I don’t yet know what this is but I know that I need to put myself into a different setting to explore this.

In the meantime, I know that I need to spend more time outside of London. I love the city but something has shifted. A part of me is tempted to take a good chunk of time off and travel. Another part wants to embark on a course (to become a natural chef for example), or maybe start travel blogging/ reviewing and yet another hasn’t got the energy or conviction to make a massive change just yet. I guess time will tell. Sometimes I catch myself questioning whether everything really did happen. I still struggle to grasp the concept itself, still find it difficult to even talk about cancer, despite reading huge amounts about it. I was at the Haven earlier today following the recommendation of my friend Laura. Such a tranquil, beautiful place with a great support network. While speaking with someone there, I was asked to share some information about my breast cancer journey and speaking out about it is still hard – it’s as though a different person is talking even though it’s me and it’s my voice. Hard to explain. I feel less anxious these days but more contemplative, partly restless but partly at ease that this reflection and review will bring about some positive changes.

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Seaside surrender 

I’ve been in Turkey for a week now and it feels so good to be by the sea, to feel the sand under my feet, the sun on my face, to smell the familiar scent of sun cream and salty air, the sound of the gentle waves, a different yet familiar language around me, long days and warm nights. London seems far far away with its crowds, appointments, worries and experiences of the last few months. And this is a very good thing. It’s hard to feel heavy or sad when surrounded by such beautiful scenery.

I was apprehensive about coming back to Cesme, a place I go to most summers ever since I was born. At first it was an odd feeling to be somewhere so familiar where everything looked the same yet I feared nothing would feel the same. Maybe that’s not such a bad thing, things feeling different. I have always appreciated being here and this time even more so. I have really needed to wind down and spend quiet time. It seems that my mind has also got quieter.

Over the last couple of days the water has been still and beautifully turquoise so I spent a lot of time in the water, just letting the sea carry me, floating and putting some trust back into nature. It was an emotional experience, I felt taken care of in the water with a faint feeling of knowing that everything will be okay.  
  

This moment 

This moment… I have longed for.. for too long… and in darkest moments thought I may not be privileged to experience anytime (soon). And in those few minutes, nothing else mattered.

It felt like I was returning to myself again earlier today, to a place I’m happiest at, to some peace of mind at long last. 
  

Released

Feels like I’ve been released… if only temporarily. My oncologist waved good bye last month and asked me to come back towards the end of July. Meanwhile, my breast surgeon who removed the stitches earlier today wished me a great summer and wants to see me in three months time. It’s a strange sense of freedom.

Now to release myself from some of the thoughts and anxieties that seem to keep me in prison some days. Someone asked me recently how my life would be different today if things hadn’t happened? The answer is that life isn’t that much different but the perceptions have changed. And my mind is pre-occupied with concerns that things might go wrong again. It’s a regular emotional roller coaster of ups and downs and I need to work at noticing the anxieties but not letting them overcome me whilst at the same time not pushing them away. It seems like an art that I haven’t yet mastered. I was speaking with my therapist about this ‘prison’ earlier. This prison I have created only serves certain types of foods and drinks, only allows a little bit of fun but not too much and the only one holding the keys to the prison door is me. I need to start being nicer to myself, more comforting and more compassionate. I think I also need to grieve properly in order to accept and let go. This is something I have found really hard to do.

It’s day 4 of Tamoxifen and so far so good. I guess with most medicines, these things are cumulative but I’m glad that I haven’t had any reactions to it so far. My hot flushes seem to have calmed down. I still wake up during the night feeling warm but it doesn’t feel like sweating anymore. I hope this improves even further in time.

I finally got round to requesting a blood test with my GP to see iron, Magnesium and other levels in my blood – something that probably should have been done a while ago and I’ll get the results next week. Whilst I’m still taking the Vitamin D3, curcumin and multi-vitamin tablets, I was curious to have a consultation with a nutritionist to help create the right mix of supplements/ diet. In my searches, I came across Jo Gamble who although not in London, does skype consultations and is a nutritional therapist, practising integrative and integrative medicine with a focus on cancer. I had my first consultation with her yesterday and a lot of what she was explaining about her approach made sense to me. More sense than some other approaches I had researched and tried in the past.

She explained that she doesn’t believe in blanket-supplements, e.g. there’s no point taking A/B/C supplement without knowing what is actually missing in the body. So to start with, she has recommended two types of urine tests. One will help us understand the estrogen regulation and 2/4/16 hydroxyestrone ratios (had to read up on this but essentially the different types of estrogen levels and methylation) – important to understand in relation to hormone receptors of cells. The second is a functional assessment of various vitamins, minerals, amino acids and information on cellular energy production, toxicity, etc which will also show how much of the vitamins and minerals my body actually absorbs. I think the latter is so important. It’s all very well eating tons of vegetables and good foods, but it’ll be key to find out how much of the stuff I’m actually absorbing. This, together with the results of the blood test should hopefully paint a good picture of where I’m at and what I need to be doing to stay well.

I went back to see Danira for some reiki yesterday and had the strangest experience. As usual, I was lying down with my eyes closed, relaxed. At some point, I saw the whole thing from above, like a third person observing, looking down and I knew it was her treating me and me lying down in front of her. The image stayed for a few seconds, then disappeared but it was very vivid and the angle was very real from the top right hand corner of the room. Never had that before… It was a great session and I left feeling deeply relaxed with a calm mind and light heart.

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Quote of the day

Started with Tamoxifen this morning after a few days of procrastination, lots of research on whether to take the pill in the morning or at night. Thought it’s best to be awake if there are any side effects and see what they are rather than have a disturbed night. Fingers crossed I won’t notice a thing!

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Sailing

It’s been a couple of weeks since the last blog post and 8 weeks post chemo. I have now completed the second surgery to replace the temporary implant for a permanent one. Big relief to have the temporary one out as it felt uncomfortable, tight, had twisted around inside and was sticking out in places causing me grief. And the port on the side is gone, finally! The surgery itself took an hour and was nothing compared to the first time round. After a couple of days and the effects of the anesthesia out of my body, I started feeling fine again.

My hair still seems to be falling out while growing back in places where it had fallen out a while ago. This means that I now have very thin hair at the top around the crown and need to wear my hair back, just like in the old days. This lets me cover up some of these patches. Meanwhile, the hot flushes got worse. They started with 2-3 a night but I now find myself waking up every hour almost, sweating from the chest upwards. It’s been tough going having interrupted sleep every single night. I’m still averaging 7 hours a night but don’t feel rested when I wake up in the morning. I have also noticed the hot flushes during the day, especially at times when I have worrying thoughts, feel anxious or irritated.

I mentioned the hot flushes to my Oncologist who I saw as a follow up from chemo on the 28th April. She confirmed that the chemo would have pushed me into an early menopause. This may be temporary or not – we will wait and see. She reiterated the importance of starting with hormone therapy  (Tamoxifen tablets) once I’d had my second surgery saying that it is as important if not more important than chemo as a preventative measure. Ironically, one of Tamoxifen’s side effects is hot flushes. I mentioned my worry since I was already having so many hot flushes at night. I guess we’ll see how things develop once I start taking the tablets this weekend. We also talked about regular check-ups which will be every three months – both to see how things are going with Tamoxifen as well as for regular blood tests.

In the meantime, I started seeing a herbalist to see if I can combine some of the many supplements into a tincture, rather than swallowing 10-20 pills per day. My friend Mati recommended Peter Jackson-Main who runs a practice at the Natural Medicine College in London. Peter asked a few questions, examined my tongue and my iris and confirmed what my acupuncturist had been saying about having to improve kidney jing. He prescribed me a mixture of herbs to take three times a day as tincture to help tonify my blood and help my liver & kidneys. I’m also continuing acupuncture, mainly to help with the hot sweats. I don’t think this has helped just yet but I will continue.

Since finishing chemo, I have also noticed a lack of motivation and shifts in moods that I wasn’t familiar with before. It’s almost like now that the main treatment is completed, my emotions have woken up. It might also be related to symptoms of the early temporary menopause, who knows. I went to a seminar themed ‘living well’ at the LOC to seek some support from other people who have gone through this and because I was curious about programs that would offer support post-treatment. Unfortunately I couldn’t stay for the whole session yesterday but it was good to meet others and listen to similar experiences.

It’s a peculiar place, this post-treatment place. During the session yesterday, the analogy of a ship wreck was used and this is probably the best way to describe it. Imagine you’ve been sailing this ship for years, you have all the maps you need to find various destinations and you’ve learnt how to sail around bad weather and stormy seas. But one day, a storm comes that is bigger than any other you’ve experienced. High waves, rain battering, etc. and you try your hardest to steer the ship towards safety. You manage to reach a shore and the weather calms down. On the shore you find loads of people cheering and delighted that you’ve made it to safety. But you feel battered.

The ship is wrecked and any journey with that ship will not quite feel the same again. So you start to sail again, cautiously – not being able to quite shake off the stormy episode and while you patch up the boat in places, it just doesn’t feel the same. I guess maybe it doesn’t need to feel the same and different is also good. Just need to find my new different to sail this ship smoothly again.

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On the run

First run since chemo finished at 29 minutes – exhausted, but happy with that! Also back in the saddle at BOOM Cycle since last week. I’d really like to get my energy levels higher and higher in the coming days and weeks. It looks like my surgery to replace the temporary implant with a permanent one is set for Wednesday, 4th May and I’d like to be in a fit state before having general anesthesia again with the hope that it will speed up recovery afterwards.

My hair seems to still be falling out while growing back in places where I had small bold patches on the side of my head for example. I’ve also started to feel really hot at night and it’s led to restless sleep most nights. I tend to wake up feeling incredibly hot and sweaty on my forehead and chest, I throw the duvet off to cool down and then cover myself again a few seconds later feeling cold. This happens a few times a night. I was starting to get worried and posted my concerns on the MacMillan forum and as usual received comforting responses from the community with many saying that the hot flushes are all part of the effect chemo has on hormones. Chemo can cause a chemical menopause, it can be temporary or in some cases permanent, as  ovaries struggle to produce oestrogen. Someone recommended getting a chillow pillow so I ordered one and it arrived today. Hopefully it’ll help cool down my head at least during the night. I’ve also resumed acupuncture which I think will make a difference with my sleep and the hot flushes.

I also have a follow-up appointment with my oncologist this Thursday to talk about this and I guess to schedule/ get a prescription for tamoxifen which I’ll be starting on at some point after surgery.

Emotionally it’s been a roller coaster these last few weeks. It almost feels like I held it together for so long and kept mentally strong so my body would follow with strength. I guess it worked but I guess also now is the time to really get to grips with what happened and to be kind to myself and process a lot of these feelings which I seem to have locked away for a long time. I spent a lot of time focusing on my body and I need to start clearing my mind to find a bit of peace amongst all the noise.

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