Looking Back Again: Recovery After Chemo

Haven’t been here a while…and I feel lost. I don’t know where to begin. I am overwhelmed by the comments section and feel guilty to not have the energy to reply immediately.

Decided to jump into one of the posts I wrote during the low points of chemo in order to truly understand the better place I am at right now.  I put my latest responses in brackets.

1. My hair growing back. I’ll take every bit of fuzz. Plus my eyebrows and eyelashes. (Now I am impatient for the growth to the back to normal and have lost that sense of gratitude but reading back my own words make me realise I have to be patient.)
2. My skin not peeling, & loosing the current discolourations and rashes. (I almost forgot about this – definitely a good thing and I have to remember to be more diligent in applying creams)
3. Gaining back sensation in my fingers which are now numb due to what they call peripheral neuropathy or nerve damage. (forgot about this too and how I worried about it. Am  not sure if I truly got my sensation back or I am just used to the loss of sensation (as my doctor mentioned) but it’s definitely an improvement – a huge improvement)
4. Being able to fully bend down to pick up stuff from the floor without getting dizzy. (oh how I have taken this for granted – it’s great to be able to do simple things myself)
5. Just having the energy to do what my heart desires. Right now my body can’t keep up with what my heart desires. (I am yearning to be more fit but I guess I’ve come a long way)
6. Travel anywhere, even a short trip. (dreaming of cool weather places, new cultures and beaches)
7. Being able to carry and swing my favourite little ones around. (the best thing ever and never thought I’d have the strength back)
8. No more steroids and being famished all the time and gaining weight. (I gained even more weight than I imagined and it’s terribly hard to loose it. This one is truly an uphill and disheartening task)
9. No more bloating from Chemo. (I’ve forgotten what this was like)
10. No more stares from insensitive rude people who see my headgear or bald head when I go out. I need to wear a T shirt saying cancer is not contagious. There are nice folks who are kind and smile at me though and I appreciate it. (I weirdly miss the kind reactions but yes it’s great to be incognito again)
11. No more chemo brain and the ability to concentrate and read more. Writing is not a problem though. (less of a chemo brain but need to work on picking up reading and writing again)
12. No more chemo brain and forgetting things and words. (it’s definitely better)
13. Not having to avoid sick people I care about and am sad to be away from, or worry about my family members in the home falling ill and having to avoid them (which will be very hard) due to my low immunity. Just getting my strong immunity back. (yes, so glad)
14. Having a cocktail like a sangria, with my cousins. Not an alcohol drinker much but now that I can’t, I want to. (don’t crave alcohol anymore as it’s not that great for me anyway. If i do want something a tiny sip is enough)
15. Doing a major declutter and spring clean without worrying about dust and exertion making me ill. (I need to embark on this spring cleaning I mention but am still susceptible to the dust)
16. Being able to swim without worrying about infections as I have a portacath inserted. (haven’t tried swimming yet and the portacath will be in for at least 2 years)

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Looking Back

Grateful for every single visit I got in the hospital and at home since I was diagnosed this January. Each of those visits made the journey so much more bearable and even brought so many moments of joy. Feel so extremely thankful for all those great memories.

Also grateful for those who stayed with me through various stressful procedures where they probably felt just as much stress as I did. They gave me confidence and took away the fears as much as they could. I couldn’t have done it alone.

Every single encouraging text message and FaceTime session is also much appreciated and will never be forgotten.

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No More Chemo

So glad I’m done with Chemo but feel a state of flux. My oncologist says it’s a very natural feeling that all her patients go through. Even though you’re happy to leave chemo side effects behind, you strangely felt safe and cocooned while undergoing treatment. Safer in a sense as you felt that there was something attacking and keeping those microscopic cancer cells at bay. Also safe in a sense that you were being monitored.

I now understand why on the first day of my treatment a sweet patient at the end of her treatments approached and told me she actually enjoyed and missed her chemo treatments. I couldn’t understand it then, but I do now.

So when people expect me to be happy it’s over it’s hard to explain these mixed feelings and to seem ungrateful. I know other cancer patients will get it though and that helps.

I know the feeling of elation will come with time as I regain more of my fitness and my old self after I’m done with the next stage – radiotherapy.

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Family

The thing that makee me the happiest is family harmony and love. Nothing beats warm hugs from loved ones. I think most of my family have no idea how much I love them. I don’t really express it, but I have this overwhelming feeling in my heart. It’s why I’m hooked on the Kardashians’ reality show. I understand now why they are so popular. At the core of it all is a strong family love, bond and loyalty in spite of all the arguments and fights.

Reconnecting with close ones you haven’t met in a while can be pretty sweet too. Cancer somehow opens up these doors and I am so grateful for that.

So happy to attend the weddings of two cousins. Weddings are just beautiful. And glad I have the support of my oncologist who understands the importance of family and mental health as well. Wish discussions with her could be longer but specialists are all so busy. It’s comforting to have talks with her and clarify doubts. In a way I’m sad chemo is coming to an end because I appreciate the comfort of the invisible support system of going for weekly cancer fighting sessions. By the same token I can’t wait for the very last session to be done with so I can start to be truly myself for a while and chemo drug free. Just apprehensive about radiation but will write about that too just to share my experience in case it helps someone out there.

Since I’m writing this blog to help other cancer patients, even though I feel self conscious that I’m complaining too much, here’s a list of symptoms that I experienced towards the end of the treatment that got worse due to the accumulation of drugs in the system.

1. Chemical metallic taste in mouth. It’s the worse symptom although painless because it’s constant.

2. Blood in nose – not too bad as I’ve seen my partner have nose bleeds which look far far worse in comparison.

3. Feeling of diahhrea but then it’s a false alarm. Sometimes it is diahhrea and that makes it hard to enjoy a meal or go out. But again not as bad as when I was in hospital and had terrible purging. Sorry for the graphic details. TMI? (Too much info)

4. Fatigue. Maybe I’m just lazy sleeping on the chair and taking too many naps. I tried to exercise by taking a walk but became a bit breathless. Guess I can start again after chemo is done. I so want to up my fitness. That will be sweet victory.

5. Discolouration on my body but luckily it can be covered by clothes and I’m not that vain. I think?

6. No eyebrows hence no expression and a constant surprised aged look. When I use makeup my eyes staring tearing so I stopped. Maybe I just need special makeup with organic ingredients that are safer? But the good in all this is that I’m gonna appreciate my eyebrows, eyelashes and hair so so much when they are back.

That’s all that comes to mind for now. So actually not too bad. I’m lucky.

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Anxious about Hospitalisations

Been hoping that I could leave my hospitalisation days behind, but recently had to be hospitalised again for a blood transfusion. Chemo attacks dividing cells and that includes red blood cells.

Was very reluctant and dejected about going in, as I was traumatised by the previous experience of one day of hospitalisation stretching to almost 2 weeks. Felt so claustrophobic and hated that loss of control.

This time though, I’m so relieved that it wasn’t so bad, apart from severe bloating from all the IVs. I immediately put on 2kgs just from the excess fluids, but definitely not as awful as the 9kgs from the last hospital stay.

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Been Reading Inspirational Blogs

Been reading inspirational blogs by women going through the cancer journey, surgery chemo and the whole works. I admire them so much and often their heartfelt posts make me tear. Just want to reach out and have some kind of magic to take away any pain or anxiety they may have.

When I read that they are going through surgery soon I pray that it will go fast and smooth and they get out of hospital soon. To me being hospitalized for almost two weeks was a nightmare as I felt so claustrophobic, controlled and confined by rules, and in ‘jail’. Hopefully the care where they are is much better.

These lovely ladies are a gazillion times braver and stronger than me and some of their journeys are much tougher, with late stage cancer and mastectomies, but they manage to uplift other people through their writing. If you’re a cancer blogger and reading this ….thank you. I know how hard it is to concentrate and upkeep a blog when you’re having fatigue and poor concentration.

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Sydney Trip (Blue Mountains): The Greens of Leura

The Greens of Leura is one of the most fairytale like places we’ve stayed with a canopy bed and the most beautiful lounge area with the best teas and biscuits. There was also Sherry and it was so cosy you never felt like leaving to explore. But the beautiful outdoors did beckon and it was nice to walk in the cold misty air.

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The surrounding beauty of the garden.

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The cosy porch.

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The pretty lounge area.

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You could help yourself to tea, coffee cookies and other drinks.

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Daily freshly prepared breakfast by the friendly owners and hosts.

Freshly squeezed orange juice.

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I miss their light fluffy croissants and jams.

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My sister loved the homemade Banana bread and eggs Benedict.

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Have fond memories of this trip and the place and feel lucky to have visited.bit was my favourite part of the Sydney Trip as I do love cool weather and nature.

So picturesque I took tons of photos. Even their calling card is pretty.

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Hard to Concentrate

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It’s been so hard to concentrate. I bring a book to my chemo sessions and so far after 8 sessions I haven’t read a single word. Somehow the brain fog is even worse during the session. It feels like a computer crash but this time it’s my brain that’s overloaded. I’m unable to respond to people talking to me or answer texts coherently. It feels like too much of an effort.

That’s why I feel so happy and satisfied that I finally finished reading a book I got in February. Been meaning to read more so that at least the brain gets some exercise and also for the escapism and knowledge.

I want to read more books by Julian Barnes now. It was a good read.

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Clueless Before Cancer

1. I had no idea that it was the chemo that caused side effects like loosing your hair. I actually thought it was the cancer itself that caused hair loss. Now I feel silly.

2. I was afraid of Chemotherapy as movies from the 90’s had given this image of cancer patients suffering, being frail, skeletal and constantly throwing up. But in my case or perhaps due to advances in research since then, we have anti allergy drugs and steroids to boost you so you actually look surprisingly good on the outside. And you even gain weight from the steroids making you famished.

3. I’m still afraid of radiation as I have no clue about it and perhaps would rather not know the scary bits before I start.

4. I had no idea that when the hair started falling my scalp would be so sensitive and hurt as if the roots were being attacked.

5. I thought that being in remission meant you’re free of cancer, and I had no real idea about recurrence and the need to be vigilant with blood tests and scans after. So you’re never quite done with it.

6. That I would actually be grateful that I had a port inserted into my chest so that I wouldn’t have to be stuck in the arms with needles and that excruciating pain as my veins are too fine and the chemo drugs are toxic causing them to collapse and all those resulting bruises that take weeks or months months to fade.

7. Never knew that one person could have two totally unrelated cancers at the same time.

8. Had no clue how alone this would make you feel until you met other women online who decided to share their journey.

9. That you would be able to handle what has been thrown at you. You the scaredy cat your whole life.

10. That the cancer could actually be a blessing stripping down life and showing you with clarity what is truly important.

11. That the gene test taken by Angelina Jolie would be relevant to you.

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Phantom Pony Tail & Other Things After Chemo

I tend to keep my hair tied up, off my neck, because of the sweltering heat in Singapore. But now after chemo and without hair I still tend to forget, & my hands reach back to retie my pony tail and then I remember. I actually feel my pony tail and phantom hair that I used to have. It’s not anything sad. Actually it’s rather nice to have that lightness of no hair especially with the weather. I might feel different if I lived in a cold country where hair keeps you warm.

This whole experience teaches me that beyond our vanities hair has a biological function. I have zero nose hairs now so tend to be sensitive to dust. Without eyelashes my eyes too feel sensitive and dryer. Hair protects us, even the unwanted hair that we remove. Arms tend to feel colder in very low temperatures, without those fine hairs.

But I sure am happy that bath time is such a cinch now without the shampooing conditioning and shaving that was the previous routine. I can be done in less than 10 minutes. And I still think it’s sexist that the pressure is on women to remove unwanted hair and not men, perpetuated by the media.

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