Reflections

Tomorrow marks two weeks since my last infusion. My energy levels are good, I’ve been exercising, socialising, working and feeling better each day. On this stormy Easter weekend, I wanted to reflect on some of the things I learnt and experienced. Reflecting has helped me remember and maybe some of the information will help someone else. Of course no one size fits all and different drugs, combinations, doses, bodies, sensitivities, this is only my own journey.

Exercise
Following the initial fog of nausea and low energy, I’ve tried to get my body moving within 4-5 days of treatment. Many say that exercise is good for fighting side effects. For me, going for a run or discovering the rowing machine in my local gym on days where running was too much, didn’t just help me regain my energy levels but also helped clear my mind and lift my mood.

Nutrition
We get bombarded with advice on nutrition. From recommendations of becoming a vegan to cutting out sugar completely to x-portions of greens per day, etc. I have always considered myself to be a healthy eater but when I was first diagnosed, I cut out a lot of foods from my diet including dairy, sugar and red meats. I remember feeling quite limited and that I had essentially built my own food prison. I then moved to a stage where I became more aware of my food and avoided mainly processed and sugary foods. Once I started chemo treatments, all plans and healthy eating fell by the wayside. With a strange taste in my mouth, I craved junk food (mainly pizzas) and foods that had intense flavours like Thai food. This typically lasted about a week before I returned to eating healthy again. I think the experience has made me even more body-aware than before so I tend to listen to my body as best I can while adding more fruit and vege to my daily diet.

Hair
I was terrified of losing my hair. You hear ‘don’t worry it’ll grow back’ and ‘it’s only temporary’. While true of course, this never helped me. For me keeping my hair had nothing to do with vanity but everything with strength. I wanted to both look and feel as strong as possible throughout the process. Also, while I have of course shared my experience with people close to me, I wanted to choose whom I tell rather than have people know just by looking at me. I used the cold cap and while it got progressively more painful to wear it throughout the treatments, I would recommend giving it a try. If you can get through the first 10 minutes, it does get easier. I stopped washing my hair as regularly and tried to only wash it with lukewarm water every 4-5 days. I also bought a silk pillow cover, having read somewhere that creates less friction throughout the night.

Consultations
While docs have your best interests in mind, I’ve learnt that it’s good to be your own health advocate. You know deep down what’s best for you and what feels right or even feels wrong. I remember just how scared I felt when I first heard the news and how quickly things moved from that moment to all the processes and recommendations presented at me with what felt like an urgent timeline. I also remember reading advice from other people to take a deep breath and slow down. Slow down to do research, to have more conversations, to have second opinions and to feel satisfied that my questions had been addressed. I’ve been blessed to have both a breast surgeon and oncologist who take the time to go through all my questions, who are interested in a dialogue rather than just a process. This has allowed me to feel like I’ve taken decisions in the most informed way, rather than helpless way. And this has felt very empowering. After all, you are in charge of your body, nobody else.

Complementary Health
Reiki has been a wonderful experience for me. A full of hour of deep relaxation in the presence of Danira who’s energy is soothing and healing. I started reiki after my surgery and continued it throughout treatments. Acupuncture has also had a similar effect. I don’t know to what extent my liver and other organs have benefited from the sessions but it has definitely helped at least emotionally. I came across Deepak Chopra’s ‘Perfect Health’ Meditation set and I still listen to some of the episodes most nights. The guided meditations have been a great way to strengthen my mind, communicate with my body and find a soothing way to fall asleep. Someone mentioned guided hypnotherapy mp3s. I listened to these religiously prior to treatment each time. I believe it has helped me receive the drugs in the best possible way and with the least resistance or fear of side effects.

Compassion and kindness
Close friends, family, loved ones have been wonderful and very supportive. I have also seen kindness come from the most unexpected places and out of the blue from friends I was no longer in touch with, friends I wasn’t close to, from clients, therapists and new people I met along the way. It has been overwhelming in some cases and I’m eternally grateful for that. Kindness has also come from people who answered my questions and exchanged their own experiences with me on the MacMillan forum.

Reading
When I was first diagnosed, I started reading like crazy. I wanted to know everything there was to know and of course quickly realized that this was never going to be achievable. The below are some of the books that were both informative but also had an impact on me and my decision-making:

Radical Remission – Kelly A Turner
The Cancer Whisperer – Sophie Sabbage
Quantum Healing – Deepak Chopra
50 Critical Cancer Answers – Contreras Francisco
Cancer Concerns – Xandria Williams
You Are the Placebo: Making Your Mind Matter – Joe Dispenza

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Hair

It’s been a week since my treatments finished. I’m still losing hair every day and my hair has thinned, especially towards the back. BUT I think I can safely say that I managed to hold on to a lot of it! SO happy! It seems to be even curlier than before and being graced with curls means the thinning isn’t as noticeable as it otherwise would be.

It’s been quite an ordeal with the cold cap from ‘this isn’t so bad’ during the first time, to excruciating pain in the last two sessions, followed by generally feeling unwell having had my head frozen for four hours each time at -4 degrees. It was worth it!

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Emotional

As this week comes to an end, I’m finally starting to feel near-normal again. Day 1 after treatment went by uneventful but with quite a lot of nausea. I don’t think the additional anti-sickness that was meant to tackle delayed nausea was as effective as I had hoped. Towards the evening of that day on Wednesday I started getting a headache. Went to sleep and woke up with the same headache around 2am and just couldn’t shift it. I have never experienced head pain like this before. It was literally like someone had ran over my head or smashed it against a wall. I never get headaches so it was a totally unfamiliar pain for me. I guess it was a combination of the drugs and the anti-sickness drugs. No paracetamol or ibuprofen offered relief and I wasn’t going to take anything stronger that would only add to a feeling of drowsiness.

So I spent probably all day just staring into space and sitting in silence. I couldn’t look at screens for long, couldn’t watch movies or even listen to music. I literally just vegetated on the couch for hours, trying to relax and breathe in hope that it would pass. And it did pass of course.

I woke up on Friday, day 3 post treatment feeling slightly better and with less of a headache. Also finally managed to leave the house and go for a short walk as well as go out for a little while in the evening to watch a movie.

Little by little and hour by hour things improved and I had a lovely weekend, meeting up with friends, socialising, with a good appetite, much less tiredness, no headaches and generally feeling more upbeat. It felt so good being out at the film festival, seeing familiar faces, chatting to friends and returning to some normality.

Then earlier today, my friends organised a surprise lunch for me at Southbank to mark the end of chemo. So sweet. I think it’s slowly sinking in. I felt very touched, emotional and I felt very loved. One thing that people have often said to me in the past few months is that I’m so brave. My friends said that it’s been inspiring to watch me stay upbeat throughout it all. I never felt comfortable with being called brave (and I know from others that they don’t either) but I guess yes. It has taken a lot of mental strength to pull through the last few weeks. It hasn’t all been grim, but it’s been quite a ride.

The experience has taught me a number of things.. about time, about focus, about perspective about choices, about friendships. I have a feeling I’ll be reflecting on these  more soon, but for now I finally feel a little emotional about the end of a journey and the start of another new chapter. I’ve been very lucky to have had consistent support from loved ones and friends who have kept me upbeat, have kept me laughing and made me feel loved. Thank you!

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Done!

Done with the cold cap, done with having drugs put into my body and not knowing how I will react to them, done with torturing my poor veins on my right arm, done with anti-sickness tablets (soon), done with counting days to feel better, down counting down to the next treatment. DONE DONE DONE! What a relief!

I don’t think it has quite sunk in yet. Maybe it will in the next couple of days but I’m done with chemo! I had my last session yesterday morning and it was pretty much the same procedure as every time. Weight first and it seems I lost 1.5kg since the last time they weighed me three weeks ago. Down to 59kg which is my ideal weight. All good.

This time I had a male nurse from Portugal who was very sweet and efficient. He chose a vein on my lower right arm that we hadn’t used yet and managed to get the cannula in first time round. Blood tests came back good with white blood count in good shape. He administered a new anti-sickness addition, Palonosetron, via the cannula to tackle delayed nausea over the next five days.

Then it was time for the dreaded cold cap and my god it was painful. So painful. I almost cried during the first 10 minutes but continued to imagine blazing sunshine beating down on my head on a beach. After about 15 minutes, it became more bearable. For some reason though the cap sat lower on my forehead this time which I don’t think helped much with the headache/ pain.

I listened to my usual hypnosis mp3 on accepting the drugs in the best possible ways and around 11am, the two injections of epirubicin went in slowly over the course of 30 minutes, sticky red stuff going into my veins for the last time. THE LAST TIME. A little later, the cyclophosphamide drip was put on. Then another two hours wait to take the cold cap off for the last time. It was an agonizing last half an hour to say the least. The right side of my head felt like it had been shot, literally like a hole in the head, very painful. Finally it was time to take it off. Almost an immediate relief from the pain.

Before leaving the treatment rooms, I took a few moments to say good bye in my head, to leave the place feeling grateful for four sessions that went smooth and without complications. So happy to turn my back on the place.

Once home, the usual procedure kicked in. Drowsiness and nausea and the nausea was hideous this time. I barely managed to stay awake and finally took myself to bed around 9.30pm. Slept on and off and woke up around 5.30pm, watched a glorious sunrise, did some work and slept again. The nausea has been okay so far today and I’ve had normal meals with no particular junk food cravings this time. I know it’s all over now but I still feel in a bit of a daze. It’ll probably sink in soon!

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Light at the end of the tunnel

I’ve just come back from a meeting with my Oncologist and I feel positive. I was dreading going back to that place – both because of the memories of nausea from my last treatment and because I knew it was crunch time with regards to making a decision about radiotherapy. When we first had discussions about the treatment journey many weeks ago, Dr. Cleator wasn’t convinced of the benefits of radiotherapy in my case. However, more recently apparently new studies that had gone through older data had shown that radiotherapy also brought some benefits to women who had a mastectomy. Apparently radiotherapy is also given for women who have a lumpectomy.

I don’t know why l was dreading the conversation so much as I am and have been very clear in my mind that I wasn’t going to undergo radiotherapy. I had made up my mind based on our initial conversations, my discussions with the breast surgeon as well as my own knowledge around the effects on the area, the skin, the implant, etc. I also know that Dr. Cleator is actually one of the less aggressive oncologists in London and I find it easy to have a rational, informed conversation with her. Still I was weary heading to the appointment.

As usual I had my own little agenda with some notes and questions for her. She greeted me asking whether I’d now had my third or fourth treatment. I told her that she had walked right into one of the points I wanted to discuss, which is what difference a fourth one really makes and whether we could just stop at three. She laughed – I guess she could see this coming. Apparently studies have always shown a minimum of 12 weeks in terms of efficacy. Okay, with that out of the way, I wanted to talk about the unusual nausea I had after my last session, compared to the first two. Rather than it being cumulative (which is what I kept hearing from others), she thinks it may have been because of a bug – maybe due to having had the cold or not feeling 100% prior to treatment. I asked whether we could maybe reduce the dose. No such luck. Instead, she said she’d make sure I get an anti-sickness drug added which actually works against delayed nausea. Good, let’s hope it works.

We then moved onto the subject of radiotherapy. She once again highlighted the newer studies but also said that radiotherapy on reconstructive surgery with implants (vs. own body fat/tissue) often causes complications. I relayed my breast surgeon’s feedback on the low likelihood of recurrence to the area and we both quickly reached a consensus that I won’t be undergoing radiotherapy treatment. Phew! I’m so glad. She quickly added that she hoped I wasn’t going to turn my back on the hormone treatment. I had no intention on doing that. I would like to research what other ways there are to manage estrogen levels (other than drug based) but in my mind, I was always prepared (more prepared) to take the hormone pills than to do anything else.

I asked her how long it takes for the chemo drugs to leave the system. She said that the drugs themselves actually leave the body very quickly (2-3 weeks) but that overall physical recovery might take a lot longer in terms of feeling 100% again, energy levels etc. She talked about 18 months in some cases. I think again this is probably some average and there are no rules. I mentioned that I would like to take a break from everything to ‘clean my body’ a little. She suggested a month.. in my mind, it’s probably a little longer than that, we’ll see. We then briefly discussed the state of my veins and she confirmed that any tightness or soreness is temporary and I should continue to massage my arm. Finally, we talked about hair and I shared my experience around the cold cap. It has obviously worked for me. I asked whether she thinks whole chunks of hair might suddenly start falling out from now on? Doubtful… probably few strands a day, continuing to thin as per the last few weeks. I would be happy with that and I would be overjoyed to finish treatments having kept a lot of my hair.

Last but not least we talked about follow-ups. I wanted to know whether I’d have to go for various scans every few months etc. She mirrored what my breast surgeon had said, which is annual mammogram on the other breast and only a check up on the other side if I notice something unusual. Good! I’m actually looking forward to not having any medical appointments in the near future and just taking a break from that. I find it curious to read on some forums that some people feel stranded after treatments finish, almost like suddenly there’s this gap or hole. I think I feel the opposite – I can’t wait to get my body back on track, resume my energy and have some fun. I left her feeling good, feeling positive and by the time I got to Baker Street, I was greeted by a beautiful sunset, almost like a big light at the end of the tunnel.

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Clouds lifting

It’s been a week since my last treatment and I feel a lot better. This time really took its toll. I can still feel slight waves of nausea every now and again but nothing compared to the last few days. I also find myself suddenly hit by tiredness and afternoon siestas seem to be a good fix for that.

Aside from the tiredness, definitely noticed a runny nose and cold like symptoms without actually having a cold. My blood pressure must be quite low as going up the stairs and getting up too quickly makes me dizzy. I’ll leave it for another 2-3 days before I go back to exercising.

Emotionally this time has been a roller coaster too. I’ve frequently felt fed up, and angry, riding the wave of ‘it’s not fair and nobody understands it’. I still find it difficult to get my head around undergoing treatment that won’t be measured at the end of it. It’s not like anyone is going to turn around and say: great, this has really worked, but I do understand that it will contribute to long-term goals. I’m due to have an appointment with my oncologist next Monday to no doubt discuss radio therapy again and I will also ask her about the efficacy of 3 vs 4 treatments. If one more treatment really adds to making a difference, I would like to see if we can at least reduce the dosage slightly.

Grateful that I managed to hang onto my hair. It feels like I’ve lost maybe 40-50% and I’ve noticed lighter, curly strands of hair falling out recently, which means that these are coming from the top and front of my head. So far it’s been a few hairs here and there and I’m hoping it’ll stay like that. Thank you cold cap! Other body hair is still growing, albeit at a slower pace. I guess most people wouldn’t notice the thinning but I know that it’s less bulky and I can really feel the cold on my scalp when I’m outside.

I’m continuing to go to weekly physio appointments to ensure the area is stretched and loosened while any cording is dealt with. Turns out that the budget through my private health insurance on these will soon run out, which means I’ll have to pay cash for these sessions. In parallel I have asked my GP to refer me to the NHS for physio but having spoken to Lewisham Hospital, the actual process of getting people onto the system can take up to 2-3 weeks and according to the woman I spoke to my case wouldn’t be considered ‘urgent’ which might mean the earliest session I could have could be in 8 weeks time. Oh, thanks!

I’ve also started to go back to acupuncture and found a lady who’s only a 10 minute walk away. My friend sees her and really recommends her. I had a good session with her yesterday during which she worked on nausea but also specific points to help my liver along during this time. I think I’ll continue to see her rather than Andrew who of course is brilliant but is an hour away.

I’ve decided to make more of being in London by trying out different courses. So last night I attended one of three ‘healthy cooking’ courses at the College of Naturopathic Medicine. Great session learning how to make almond milk from scratch, a healthy muesli pot that can be eaten over several days, beetroot humous and more.

With the end of chemotherapy in sight, I’ve also booked a one-way ticket to Barcelona in the week leading up to Easter. What a great feeling to book a flight again, almost a tearful moment and I’m so looking forward to getting out of the country for a few days to enjoy the sea, sunshine, food, friends and a different scenery.

In the meantime, my mood seems to have lifted from the last few days and I’m enjoying things again, I can feel enthusiasm and motivation returning. Had a great start to the day by booking a breakfast meeting at the Shard. As usual with these venues, part of the menu is actually reasonably priced (when there’s no alcohol involved). Great way to start the day and it was a stunning morning to be above London!

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