A few strands of hair

When I last went to the LOC for my blood test and talked to one of the nurses there, she said that most people experience hair loss roundabout 14 days after their first chemo. I find it curious how I don’t feel the effect of the drugs in my body but that they’re obviously still doing their thing all these days after my first treatment. So I woke up yesterday morning (15 days after the chemo) and as I put my hand through my hair, I noticed a few strands coming out towards the bottom half at the back of my head. I ran my hand through that part again and more hair came out. Shit! It doesn’t really matter whether you expect something or know it might happen, it’s still a shock. And it was. After shedding a few tears and hairs, I got myself together and got on with my day.

The good news is that I haven’t lost any hair anywhere else. I’m guessing that the hair falling out at the moment is the lower part which wasn’t covered by the cold cap. It’s the shorter hair which is right at the back and bottom of my head. Other hair seems to be still growing as I’m keeping a close eye on my legs which still need shaving. I’ll be happy if it stays this way and will focus on keeping positive. A few people suggested I should cut my hair shorter. I don’t really see the point in that. I love my hair as it is and if it starts falling out in certain places, surely I have a better chance of covering those places with longer hair. If I do end up losing a lot of hair, I can still get it cut short or even grab a razor and spare me from too much frustration. But hopefully it won’t come to that. It is of course nice to hear that I would probably look good without hair (heard it a few times) but it doesn’t provide me with any comfort. I guess I feel that my curly hair is so much a part of me, my personality and it’s tough to contemplate what it might be like without it. Yes it’s temporary and yes it grows back – it still doesn’t make it joyful.

I had a check-up with my oncologist earlier this week and thought I’d take the opportunity to quiz her some more about Radiotherapy. She was as straight talking as ever and said that the benefits that recent studies have shown are again a cross-section of age, stages etc. I asked her about the risk of recurrence on the same side and she said that from her experience of being a breast surgeon all these years, it is an extremely rare thing given that I had a mastectomy. In cases of lumpectomies, radio therapy is often recommended to clear the tissue around the surgery I guess. So if risk of recurrence on the same side is so rare and everything was removed with safe margins and radio therapy can only be given once a lifetime to a certain area, I will opt for not having radio. We also spoke about double mastectomies. I’ve been wondering about this for a while, e.g. is it safer to a have a double mastectomy to reduce the risk of recurrence on the other side? In the US, it seems that many women undergo double mastectomies and doctors encourage it. She agreed that this was the case in the US but said that it was done mainly out of fear. Just because it happened on one side, doesn’t mean it will on the other side. Anything that develops on the other side would be regarded as a new cancer rather than a recurrence. Recurrence is a scary word and I felt good about having this conversation with her.

We also discussed next steps (after chemo) with regards to the implant etc. and she added some more saline to the temporary implant to increase the size slightly. It now feels more like a breast actually, quite happy with that. Conversations about the aesthetic side of surgery that will follow prompted me to have a look online at what other people have done. And with that, I came across some beautiful tattoos on mastectomies. To be fair, my scar is small compared to what I see on these images but some of these are great, like this one, this one or this one. And why the hell not?! Don’t know if I would do it – all depends how I feel in a few weeks’ time. As long as it’s something small, tasteful and won’t necessarily show in a bikini. Talking of bikini – can’t wait for warm sunshine. One week until I’m half way through chemo and a few more weeks until I can escape into sunshine and warmth!

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Day 11

It’s hard to believe that it’s been almost two weeks since my first cycle of chemo. I’m still relieved to say I haven’t had any side effects. I noticed that I get a little more tired lately but that can easily have something to do with the weather as well as not sleeping a full seven hours most nights. So far also, I haven’t noticed any hair loss. For someone who loves washing their hair every day, it’s been tough switching to every three days. But it means that washing my hair is now quite a treat. Always a matter of perspective.

I had my first post-chemo blood test done this morning. Since this is the period of time where the immune system typically dips to its lowest, I was very curious to see how my white blood cells were doing. Many people who are going through similar experiences have said that it made them distrust their bodies. Especially those people who were living healthy lives, eating well, exercising etc. and yet their bodies still developed and didn’t pick up on abnormal cells.

I wouldn’t say that I totally distrust my body now. I’ve always been very body aware, which is part of the reason I thought something was not quite right when I first went for a check up but I do understand the notion of not trusting your body completely anymore. So with that in mind, I had no idea what to expect about my blood tests.

An hour later, a nurse came to review the results. Turns out that my white blood cell count is super high. It was 5 pre-chemo and is now at 12.9. This is of course partly due to the injection I had a week ago to boost the creation of white blood cells but according to the nurse, some people still experience a massive dip in the count during this particular time in the cycle. Very glad. It’s the little things these days I feel like celebrating and this is one of those.

It also means that I can trust myself about feeling good, feeling physically strong and mentally positive. We then had a chat about side effects. I wanted to know whether this experience after the first cycle is a good indication for what is to come during the 2nd, 3rd or 4th cycles and she said that yes, this was the case but that the drugs of course accumulate over a period of time. I also asked about hair loss. She said that without scalp cooling, most people start to lose their hair on this particular regime around two weeks after the first cycle. With scalp cooling, it varies so much from person to person. Some people keep all their hair over the course of the cycles, some people have some hair loss etc. Anyway, I guess I have to sit tight and stay positive. I had Reiki today and it felt like a very intense session. Struggled to stay away during some of it but felt that I experienced some things on a very deep level. Relaxed and quite tired after that.

So, it’s been a good week. My emotions have been a little up and down now and then but mostly up. I got fed up with my slow juicer (45mins for one glass of juice) and bought a Nutribullet. Having read up on juicers, I know that ideally the juice should be separated from the pulp and pressed slowly to preserve the enzymes but I figured that some juicing is better than none and if I can quickly prepare a green juice every morning before leaving the house, it’s better than no juice. Plus, it’s much easier, more fun and actually some of their recipes tastes really good – I like the consistency, even with vege like kale and spinach it’s drinkable and tasty.

I went to see the College of Natural Medicine (CNM) for a chat about their acupuncture course. As much as I would love to start in March/ April, I feel like I need some time to unwind, travel and some time off without having to worry about attendance levels and exams. It’s something I will look at again for a September start. This particular course combines acupuncture with naturopathy and I like that it has a broader feel to it than some other acupuncture courses out there. If I can coordinate studies with work, I should be able to complete it in around four years time.

Something about this experience is pulling me towards approaching health for others in a different way. There’s something missing in conventional medicine today. Everything seems blinkered and focused on cause and effect, fixing, patching, removing without addressing root causes or other relating factors. I can imagine running a small place somewhere by the water in future, somewhere peaceful people go to, somewhere they’re listened to, somewhere they feel well, feel good energy. Maybe with a relaxed café/ lounge bar next to it. Somewhere atmospheric both by nature but also designed to provide a completely chilled-out atmosphere. Good music – goes without saying.

In the meantime, I need to schedule some trips to have things to look forward to. The New York Times recently published its 52 Places to go in 2016, some beautiful photos and definitely inspiration. Talking of photos, I’d like to see if I can start some kind of photography project even if it’s just a collection for myself for the time being. We’ve seen some stunning sunrises and sunsets over the past week in London. Grateful for all these moments, for feeling good and for all the new experiences gained.

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So far so good

Day four after the first cycle and I’m really grateful that I’ve had a fairly normal couple of days. I’m continuing to be active (walking around 10km a day) as I know this keeps me strong – both body and mind.

I woke up early yesterday morning feeling good and went to a work meeting in Paddington. Good to be back to normality and to be involved at work. Energy levels seemed to be better. I continued to drink tons of water throughout the day, both to stay hydrated but also because my mouth often feels quite dry.

Headed to Primrose Hill to see Andrew for acupuncture late afternoon, always a great way to relax and get things moving around the body. We spent some time catching up about how things went and any side effects I’m experiencing. He asked me whether I had a metallic taste in my mouth (common side effect) but I can’t say I do. Just feels drier than usual. Then it was time for the needles and my stomach in particular seemed to be making noises and responding well. I decided to stop any anti-sickness medicines and I’m convinced I felt better because of that. I’ve been looking at studying again. Somehow, this experience is drawing me towards exploring a holistic approach to medicine. I contacted the College of Naturopathic Medicine and discussed some options. I’ve always been interested in acupuncture and maybe now is the time to explore this further. The prospect of helping others, learning something new and using my hands in the process is quite appealing. The college runs both part-time and full-time options and I’m trying to work out if I can fit this around my work. Even if I never actually practise acupuncture, something is drawing me towards learning.

I realised yesterday that the bad heartburn a day before may have been due to my monthly cycle which sometimes happens. It would also explain feeling quite low in energy in addition to everything else. I woke up today feeling tired but good again. I’m taking each day as it comes and aside from the initial nausea earlier this week and a drier mouth than usual, I’m feeling good. I do have some soreness under my arm where I had surgery but this might be due to the cording or stiffness in general or some of the exercises I was doing on the area a  few days ago. I’m glad that my cravings for junk food have now also subsided and I was able to start having green juices again, something that just wasn’t possible a few days ago.

I stopped my email notifications from the MacMillan forum. I had joined their ‘January Chemo Club’ which is basically a part of the forum where people leave messages around how they’re feeling, what they’re experiencing and seeking support from others. It seems that everyone reacts so very different to the substances and I’m not sure I want to read all the horror stories some people are experiencing. I guess it’s like any other platform – you’d post mainly negative things rather than positive experiences.

For me, for now, I’m grateful for how things have been and I’ll continue to balance being active and taking time to chill.

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Day 2

48 hours after my first cycle. The night passed pretty uneventful and I woke up to a beautiful sunrise, feeling fine. Took a photo and tweeted the sunrise which was picked up by a local news site, great start to the day.

Around an hour into the morning, I started having some heartburn, which is quite a familiar feeling. I ate some breakfast, took a couple of the steroids and decided to give the other two anti-emetic drugs a miss for today. Still have some nausea at times but definitely smaller waves than yesterday. I have a feeling the anti-emetics were making me drowsy which actually wasn’t helping much with nausea. Heartburn lasted on and off for about 3-4 hours while I was trying to do some work from home, not pleasant but familiar from instances where I’ve had it before. I ate some left-over pasta with pesto for lunch and that seemed to settle my stomach.

I hadn’t left home since monday afternoon and with heartburn settled, I took a walk towards Greenwich park and the Royal Observatory. The first 10 minutes were tough. Very low energy and just trying to fill my lungs with fresh air. Certain smells proved to be quite an obstacle course en route. The smell of cigarette smoke in places and other smells almost instantly brought on nausea. In contrast, the smell of Mc Donald’s and fried things smelt good, so did beer for some strange reason. Something is messing with my sense of smell and taste.

The walk gradually got easier but climbing up the hill at the observatory wasn’t easy. Quite unbelievable that I smashed a 5km run in 28 minutes only 3 days before. Beautiful views from up there as usual and good to sit still in fresh air for a while and contemplate things. I’m grateful that so far things have been manageable and hope that my body continues to be supportive. Bought a few freshly pressed vegetable juices on the way back from a health shop (not at all in the mood to even smell or taste them right now) and managed a 5.5km walk overall.

It feels good to continue work and I’m looking forward to getting out and about a bit more over the coming days.

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1 down 3 to go

Yesterday morning, following a light breakfast with Lucy in Marylebone, we got to the LOC at 10.30am for my appointment. It was good to have seen the facilities the Friday before, so it all looked slightly familiar already.

The receptionist showed us the way to my pod in the treatment rooms and asked us to wait for the nurse. Earlier that morning I thought I’d feel huge anxiety but found myself on the other side of the spectrum, feeling quite upset and teary. I suppose it’s like my friend Karen said in her email that arrived overnight: it only really all kicked in when she went to her first appointment. I guess it was the same for me. Plus the news of the day about David Bowie didn’t help much.

I had a chat with the nurse who explained what would happen throughout the day and was given my first anti-nausea pill (Emend). We then proceeded to try different sizes for the cold cap. Given the choices of small, medium and large, I felt that the large inner cap and a medium outer cap (to keep it tight) fitted more of my head. Apparently it’s very important that there is no gap between the cap and your head at the very top. Quite tough to find the right size and get it fitted properly. I also tied a scarf around it to keep it tighter.

As I opted for no PICC line, she then inserted the cannula which was a non-event. Hit the vein no problem with a bit of stinging but no big deal. Just as well I never had an issue with needles. Then I was on drip with saline I believe to keep my hydrated.

Next up, the cold cap. I had taken a paracetamol an hour before to minimise any headaches. The nurse explained that the first 10 minutes are the worst. With that in mind, I was prepared to be patient. She sprayed my hair with water and applied conditioner (eases for cap removal afterwards). Once fitted, the Paxman machine was switched on and the cap became increasingly colder. Remember those moments when you greedily bite into an ice cream and put so much in your mouth that you feel your forehead and eyes hurt for a few seconds? That’s basically the feeling. And after 10 minutes, there was no more pain. Next up, some more anti-nausea meds, this time intravenously.

Then it was time for the first of the EC – the Epirubicin which looks like a pink juice and was given in 2 large injections, slowly by the nurse over the course of half an hour. Time passed quite quickly. I imagined the pink going in, seeking and finding any potential stray cells and sticking itself around these.

Another half an hour later, she came back with the C – the cyclophosphamide which was infused via the drip. Once done, I had to wait another hour or so with the cold cap on. It has to stay on a certain amount of time before, during and after treatment. The cannula was then taken out and cap removed. Quite a relief to have it off but altogether bearable. The pharmacist arrived and explained the various anti-nausea medication to be taken for 3 days including the Emend, small dose of Steroids (Dexamethasone) and Domperidone (sounds way too much like champagne).

He also gave me a booklet that highlights side effects in green, amber and red with respective actions to take depending on colour and approved some of the supplements I’ve been taken (curcumin, D3 etc.). He said he’d be checking and confirming the chinese herbs in due course. I was also given an injection to take home and administer 24 hours later to boost white blood cells.

We left the LOC and went home. I lazed on the couch while Lucy snoozed as well and did some of her studies. Then the hangover kicked in, together with a headache, cold feet and a cold nose – no doubt from the cold cap. The nausea literally felt like a hangover, on the edge of being sick but not quite enough. Came close to a couple of times but kept drinking water.

Lucy left and Mati came over, made me some baked potato and sweet potat – the only thing I felt like eating and stayed the night which was comforting. I felt pretty nauseous all evening with a strange taste in my mouth. Went to sleep around 10.30pm and slept on and off all night, mainly due to having to go to the bathroom every two hours from all the liquids. No nausea at night. Lots of Deepak meditation audios during sleep cycles.

I woke up this morning feeling fine and I’m wondering whether either the medicines themselves or the fresh ginger tea is making me nauseous. At least today’s hangover feels much lighter than yesterday. I decided to cancel meetings though as feeling too tired and a little dizzy. Managed to do some work and then my friend Laura spent the afternoon with me. Great to have some company, relax and chat. Gave myself the injection at 2pm with no issues and have since been relaxing. I think I’ll be ready to leave the house tomorrow and go for walks and for a meeting. I have definitely lost my appetite and the thought of certain foods induces nausea, like seafood and meats. I had a big breakfast of coconut yoghurt, musli & strawberries and have been snacking since. Feels better to snack then have big meals. I ordered a silk cover for my pillow (as recommended by people) and look forward to trying that out. Both to keep cool at night but also to be gentle to my hair during this time.

Prior to starting the cycle yesterday, someone on the MacMillan forum had recommended listening to inspirational hypnosis and so I did. In one of the sessions you’re asked to speak to your body and explain what is about to happen so that you’re ready. I found that really helpful, amongst other things. So now it’s been over 24 hours since my first chemo cycle and I’m riding small waves of nausea, manageable! 1 down, 3 to go!

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Let’s do this

Feels like it’s been a week of appointments. After the follow up with the breast surgeon on Monday, I managed to get an appointment with a physiotherapist a couple of days later. She spent an hour massaging the cording and moving the area under my arm where the scar tissue is. I could feel some difference immediately after the session and stretching my left arm out no longer felt like such a pull with less soreness in my upper arm. We had another 1/2 hour of similar exercises, movements and massages two days later and there’s some improvement again. Great!

On Thursday, I had my second session with Andrew and some more acupuncture. I told him that I’d been feeling apprehensive and worried about chemo. I also confirmed with him that I would be sticking with my decision to do the EC regime rather than Taxol. He said he would put together some herbs for me that help during the course of this – though I need to get this checked with the guys at LOC first. I like Andrew and I like being in his presence. There’s something very calming, reassuring about him and his needles definitely hit the points. One point on my right wrist was quite sore but spot on (anti-anxiety & stomach point) that half of my arm reacted to it. I was feeling quite low yet scared on my way to see him but left the session feeling calm again. He also advised that I should use some kind of visualisation on monday when the drugs first go into my system. Some people tend to imagine little warriors entering the body in search for cancer cells; I think I’ll be imagining about the drugs seeking out abnormally behaving cells, attaching themselves to these cells and hugging/ squeezing these until they pop.

Andrew also introduced me to Milky Oolong Tea. I drank some after my session and knew I had to buy some. SO delicious and amazingly milky in taste even though it doesn’t contain any milk. In Chinese, it’s called Wu Long Cha and it’s seen as a herb that clears toxins, promotes digestion and revives the spirit to enhance alertness and relieve fatigue. Apparently it’s also commonly used with chemotherapy in China. Other tips from Andrew included a certain acupressure point against nausea and ‘plenty of exercise’!

On Friday morning I had an echocardiogram, blood tests and a pre-chat with a chemotherapy nurse. The echocardiogram took about 5 minutes and confirmed that my heart is healthy and strong with everything performing the way it should be. Great! Blood tests all came back good and strong too with white blood cell count at 5.0, Platelets (red blood cells that help prevent clotting) at 215 and Neutrophils (white blood cells that help fight infections). These three levels will be closely measured over the coming weeks to determine how the body is reacting with the drugs. All other measurements from the blood tests (kidney, liver, cholesterol, etc.) all good.

The chemo nurse took me into a private room and chatted with me for about an hour. She told me more or less what to expect, why the sessions take so long (blood tests, drug preparations, slow insertion into the body etc.) and what side effects to expect. Nothing she said came particularly as a surprise as I had been reading up on EC quite a lot. She explained that they’ve had some good successes with the cold cap and that they’re using Paxman. I was relieved to hear as I’d been researching the various brands and Paxman has had some great reviews from other people who’ve successfully managed to keep hair. I confirmed that I would like to include the cold capping as part of my treatment. Probably need to take some paracetamol prior to the cooling, as it can feel quite uncomfortable for about 20 minutes. She said they would provide heat pads and blankets to keep warm. Whilst there are of course are side effects that may be concerning, I know and have learnt that losing hair can be quite distressing. I’m planning to stay positive and keep as much as hair as possible. I have often felt that my curly hair plays a big role in defining me and I would like that to continue.

We then talked about the various medications they would give me to take home and that I should keep an eye on my temperature on a regular basis. Other than that, we went through things I was already prepared for and knew of. It was still very good to sit down and actually talk through these with someone who is directly dealing with patients (rather than have them in my head). We also talked about the PICC line. Dr. Cleator and I had discussed that the PICC line would be an option (instead of a port) and I had an appointment scheduled for pre-chemo to have this inserted. I asked whether there was any chance of trying without a PICC line by just using my veins in my right hand – since we are planning four session in total. She examined my veins and said we should give it a go. Worst case scenario, it’s too painful to do it that way and we can still opt for a PICC line 3 weeks later. I’m happy to give it a go – it means there’s less risk of infection as PICC lines are external, need to be kept dry, flushed out every week, cared for etc. etc.

As a final part of our conversation, she showed me the facilities. The place is in the basement of the LOC and features a number of pods with curtains that some people had open, some closed. In each pod, there’s something that looks like a dentist chair which reclines completely, another chair for a guest and a screen for movies. The place has a calm and quiet feel to it and the staff I met briefly seemed  smiley and warm.

In addition to support from friends and loved ones, I have had a lot of encouragement from forum members at MacMillan, from people who are on the same regimen and I think I will feel much calmer about things once I’ve actually had my first session. It’s been a long time coming and a part of me just wants to get on with it now. I also messaged Victoria Derbyshire on Twitter, who has so publicly been documenting her journey through treatments. Her last few posts gave me encouragement and I told her that. She kindly replied “@vicderbyshire: @Fundamentals am glad they have; sending you loads of strength and positivity. You can totally do it.”

So let’s do this on Monday!

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A week to go…

… until my first chemo session on Monday at 10.30am. Next week this time, it’ll be a day after my first chemo session. Following my last appointment with Dr. Cleator and the decision to go with four cycles of EC, I spent many days still feeling indecisive about whether that was the right decision and whether to instead switch to Taxol. One can easily drive oneself crazy. There will never be a right or wrong option and as someone who has never experienced the effect of either on my body, it has proven to be an impossible decision to make. I polled many people on their views with regards to respective side effects and the decisions are of course always different.

I sent a note to Dr. Cleator asking her to highlight the side effects of Taxol one more time so I can compare more directly. She sent a short note back on that, also confirming that any heart issues with EC are rare and linked to family history, age and other pre-conditions.

For now, I’m sticking with my original decision, one which Dr. Cleator seemed to be happy with – when pushed to make a recommendation, she actually recommended EC. Counting down from 4 rather than 12 cycles feels easier somehow. Whilst I’m still not 100% sure, I feel calmer about next week – at least for the time being.

I had my follow-up appointment yesterday with breast surgeon Katie Hogben. I was a little concerned about feeling sore on the side of my breast where the port sits. It’s still uncomfortable to sleep on that side and it seems sore whenever I touch it. She confirmed that this is normal and will unfortunately not change much. She’s happy with how everything has healed and recommended I have 1-2 sessions of physiotherapy to help manage some of the cording that has built up. It seems that I had got rid off the initial cording after surgery by massaging it but it has now developed on the back of my underarm and towards the muscle in the front. We also discussed further procedures with regards to reconstruction. Apparently the next operation is a minor one, which will replace the temporary implant with a more permanent one. All of this will of course have to wait until chemotherapy is completed (March/April).

She inquired about my decision on chemo in more detail but couldn’t offer input on different regiments, as the decisions are so personal. We did talk about radiotherapy and I mentioned how initially the consensus was I didn’t need any, yet the board recently opted that it might be a good idea. She agreed that I probably wouldn’t need it which was a great relief to hear.

On Friday, I’m due to have blood tests and an echocardiogram done. I will then be meeting the chemo nurse for a pre-chat, I suppose I better think of some questions.

It felt good to deviate from a strict diet to indulge in delicious foods over Christmas and New Year’s with the occasional cheese, red wine and champagne. I’ve realised that over the last years of living in London, food and eating out has become a major part of my life and I love it. Recently, both Xandria who recommended the supplements and Danira who practises Reiki with me, asked what brings me joy. I realised that food and sharing food with people (amongst other things) is definitely high up on my list. With that in mind, I’ve decided to continue to make an extra effort to eat greens, have my regular vegetable juices and avoid sugars but as for everything else, since I’m passionate about food, I’ll continue to eat well. What brings you joy?

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