Not Sure What to Write Today

So much on my mind that I want to offload but I don’t know where to begin. It’s harder to write about negative thoughts because it seems indulgent. But that’s the reality.

Before the diagnosis I thought it (the cancer) would all be settled with the surgery. Only later did I learn I had to go through chemotherapy followed by radiation. I was looking forward to it to being all over then and to able to return to my normal life. Now I just learnt that cancer cells may be resistant to chemo and so you need to undergo chemo again but this time with different drugs. There is no more normal but the ‘me before’ and ‘me after’ diagnosis. Hopefully the ‘me after’ can be the better version.

And another reality is that detection and treatment for Ovarian cancer is rather lacking and more research is needed. My oncologist wants me tested for the faulty gene, the one that Angelina Jolie has. It’s great that she has used her celebrity to raise awareness for  this cancer.

I found out there is no Ovarian Cancer support group in Singapore. That was rather disappointing. Also in countries like the US or Australia wigs for chemo patients are considered to be prosthetics and covered by insurance, but not here. I also feel that there should be free cancer screening for the population because prevention is always better and would mean less cost in the long run.

I think the oncologist doesn’t want to scare or overwhelm me so not so good news comes in tiny pieces like possible side effects like ulcers in the mouth which I seem to be getting now. I also have a much higher resting heart beat, 90 vs 70, also a side effect of chemo. It may be adding to feelings of anxiety, because lately I’ve been getting panic attacks  in the car again.

Will try to focus on the good things and joys in life – nieces’ birthdays, cousin’s wedding. Just don’t want to miss a thing.

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Loosing Hair with the Chemo

I was dreading loosing my hair due to the chemo and prayed that I would be the exception especially when it came to my eyebrows and eyelashes. My oncologist told me that it will all definitely fall out eventually. (The only great thing is unwanted hair that you used to shave or wax or epilate being gone too).

Now I have come to terms with my Gollum look, but when my long hair started falling out in clumps in the shower while I was washing it, it was utterly devastating. I felt like sobbing, but the sobs were stuck.

After that devastation was replaced by annoyance. Hair falling everywhere was such an irritation. I had to keep picking it off my clothes and pillows and I hate mess, so I had a hair stylist come to the home to help me cut it as short as possible. I didn’t want it shaved as my scalp was hurting and very sensitive. I also imagined that shaved hair would grow back with a rough texture and be prickly and itchy. Think I made the right call.

With shorter hairs falling it wasn’t as bad and I eventually got used to my new look. Besides everything else that was going on, like my right leg swelling to resemble an elephant’s foot, and making me loose my mobility, loosing hair seemed minor.

This journey definitely puts things into perspective. I used to complain about my thinning hair, but now looking back at old photos, my hair looks thick enough and pretty darn great.

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10 Things I’m Grateful for & Why Oddly Enough the Cancer Feels like a Blessing

I’m in a bright side of life mood right now & I’ll update this list as I recall more sliver linings.

  1. It’s making me see how much everyone cares. My Uncle and Aunt who hardly text or take photos with their phones, because it is quite an effort for them, text me now frequently and send me photos and videos of my nieces to cheer me up. Another Aunty stayed with me in hospital every night till the family nicknamed her my night nurse. She hardly got any sleep then. My partner got me through all the scary procedures. He even exposed himself to dangerous X-rays (don’t think the metal apron was much protection as even the radiologist left the room) coming into the procedure room with me because I was afraid.  My Sister, the math wiz, does all the financial transactions insurance claims etc so that its one less worry for me. My mum does everything under the sun, like helping me shower when I was quite immobile. My Cousins, D especially, and two good friends I’ve known for years, always contact me to find out how I’m doing. Surprise visits at the hospital (including cards drawn by the children) that brought smiles to my face when I was so dejected. And my aunts also cook for me and so many people buy me food. The list of loved ones showing care can go on and on.
  2. Forces you to face your mortality and what’s truly important in life. Just helps you zero in.
  3. Makes you appreciate little blessings especially things from nature, like flowers your sister bought to brighten up the home and hospital. That even though you can’t travel right now, you are lucky to have travelled a lot in the past and can relive the memories with the tons of photos you took.
  4. The Nurses who were so patient and kind to me in the hospital and my oncologist’s clinic. Always so cheerful with a smile and words of encouragement. Plus my Doctors who are warm and caring and answer your millions of annoying questions. My oncologist even gave me her mobile numer so I can text her through WhatsApp. My Gynae, who is very sweet, held my hand and calmed me before she performed surgery as I was getting anaesthesia. She’s just wonderful and eased my crippling fears of anaesthesia.
  5. I’ve always been curious about whether my face would look ok with no hair and how my scalp would feel (clean?), in a way I got to experience this. I wouldn’t have done it otherwise as I think I look better with long hair. I would never imagine that I would get used to the light airy feel of just a bit of fuzz on my head (like an orang-utan).
  6. Have always struggled with weight loss but this time the weight just dropped off so easily. And the hospital Nutritionist actually told me not to watch my weight too much and eat what I like. She even suggested milkshakes and ice-cream.
  7. No more gross periods
  8. No need to shave or epilate or wax, with the unwanted hair gone. That kind of hair loss I don’t mind at all and I wish it could be permanent.
  9. That I have health insurance (Medishield Life cover alone is not enough) which I now encourage everyone to take. Such a blessing. Otherwise I would have been bankrupt and seriously distressed.
  10. Feel mentally stronger and secretly proud of myself having procedures I was previously terrified of. There’s a kind of satisfaction that I survived all that trauma.  My friend E prompted this feeling sending me loads of spiritually boosting texts from Australia and always telling me she’s proud of me and how brave I am etc.
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Revealing Too Much?

My partner who is extremely private and protective, was wondering if I was revealing too much about my diagnosis. I kinda grappled with that myself for a moment, which is why it took me so long to start writing about it (besides the extreme fatigue I was experiencing). But I finally figured I’m doing this to help and reach out to others who may be going through the same thing and are feeling lost and alone. If I leave out critical information about my diagnosis then it would be far less helpful.

Even for me, reading posts by other people with cancer helps so much. It’s reassuring to know that I’m not the only one experiencing certain side effects and that it’s ‘normal’.

Also I want to warn people of the symptoms so that they can have early detection. Especially since the symptoms for Ovarian Cancer are so vague and often ignored.

And for selfish, indulgent reasons, writing is therapeutic. I write in my journal (Moleskin) as well, but there is something special about writing for an audience, especially when they interact with you through the comments, twitter or Instagram.

It’s a great way to update loved ones as well. Much easier this way than talking about it multiple times in person. I also tend to express myself better this way. It’s a way to tell everyone how you feel before it’s too late. Mushy things are easier written down in our Asian society adverse to gushing emotions. I tend to be highly emotive though. My heart is for all to see and I can never hide how I feel.

I feel so encouraged that they continue to support my blog and have been doing so since I started blogging way back in 2005.

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Great Week

Been having a great week. I think it’s because my double operation wounds (hysterectomy followed by laparoscopic surgery) are healing. Previously I had to start chemo before the wounds had completely healed so was in a lot of pain and could hardly bend or walk.

Now I find that I am able to bend a little more and sit on the floor again and that is such a wonderful thing. Especially since I can sit close to the little ones and be closer to eye level with them rather than watch them as a spectator from afar.

What’s even better is that rather than be traumatised as I expected over my bald Gollum head, they hardly bat an eye and except me as I am. Oh the sweet innocence and realness of little children. It was so funny when Niece 1 told me I can’t wear a hair band if I have no hair. They sure do make me laugh and keep me upbeat.

They also show great empathy and care when they saw my peeling fingers and feet (how the body reacted after the trauma of hospitalisations and tons of IV and antibiotics.)

Niece 2 made me laugh by asking me with the sweetest shy smile on her face, why my hands and feet are so dirty, but later when I explained she was so darling and concerned that I didn’t apply cream after my bath and promised she would remind me to.

The side effects of chemo feel rather mild this week – mild bloating and sight numbness in two fingers. Not too bad. I totally forget all these when I’m distracted by the children. They give the best kind of  healing.

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Exploring Freemantle Market in Perth

It’s always lovely to explore markets with fresh produce and other freshly made snacks. Taking half a day to explore the markets was well worth the effort. There’s a direct train from the city. Just an half hour train ride from Perth’s Central Station.

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Think you just have to walk about 8 minutes (I’m a slow walker) to reach the market.

There are buskers and loads of tempting cafes along the way to the market itself.

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It was a relief to escape from the blazing sun as we entered the enclosed market.

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Didn’t take a good picture but the mudcake was really fudge filled scrumptiousness.

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The fresh orange juice was lovely and with the friendliest proprietors who entertained with some juggling.

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I didn’t check the prices but I think flowers here are not as expensive as they are in Singapore. Perth food prices are pretty steep though around the time we were there, although the currency is on par. I learnt that it’s due to the earlier mining and property boom in Perth and the corresponding high labour costs.

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Levi’s Doughnuts

Had the most divine sugar doughnuts at Perth’s Freemantle market. They were freshly made and the guy selling them had such a friendly smile. Eager to have Levi’s doughnuts again if I ever get to Perth again. My preference is for the plain sugar doughnuts, always. Don’t quite fancy cream filled ones like those sold at Krispy Kreme. And doughnuts always taste better to me when they are still warm.

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Dreaming of Pretty Perth

Travelled to Perth in mid September last year. The Spring weather was cool and I wouldn’t have minded it even a little colder. I’m very much a Winter person especially now with hysterectomy leasing to early menopause and with it hot flushes.

What struck me is how pretty the city is with its brilliant blue skies. I would say it’s the prettiest city in Australia with the Ocean in view and the powdery white sand. Can see why family and friends have chosen to live there. Apart from the depleted ozone layer and lack of hawker food (compared to Singapore), quality of life there seems great. You have both the perks of city living and the beauty of nature ever present. And with a sparse population, all that space. Definitely great for claustrophobic me.

Hope to visit dear ones again one day soon.

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Favourite Drink: Avacado Juice

More accurately it should be called a shake. The one at Alexandra Village hawker centre is truly the best. Fragrant, creamy and refreshing. It’s a meal in itself.

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Confused by My Diagnosis

I’m still trying to wrap my head around my diagnosis.

When I first heard that I had ovarian cancer stage 1c I thought great, it will be all cured with the hysterectomy. But after the surgery and biopsies another cancer was found in the endometrium which was staged at 1b. It seems that the pathologist determined that the cancers were 2 primary or synchronous cancers rather than a spread which would have made it stage 3. So I’m lucky in that sense but I can’t help but wonder if they got it right as this is a very rare occurrence.

Because it’s now considered cancers in 3 places with the ovarian tumours being grade 2 (more aggressive growth then grade 1), I would need to go through both chemo and radiation. Ovarian cancer cells are eradicated through chemo while getting rid of endometrial cancer cells has a better outcome with radiation.

To make it even more confusing is that endometrial cancer is also called uterine cancer or womb cancer. Makes it hard when you’re trying to research the topic.

My gynaecologist estimated that the tumours grew aggressively in 3 months but I only felt the extreme pain in the last week. One of the tumours was 19cm long and I could actually feel it crushing my ribs. Couldn’t sleep at all the last week of December and through New Year.

In early December I had bloating but thought it was my usual stomach issues and nothing serious. There was also unexplainable weight gain even though I was eating the same amounts.

The last week of December after Christmas I couldn’t breathe feeling some type of fluid pressing against my diaphragm. It turned out to be ascites.

This excellent resource, Cancer Research UK has a better explanation:

Ascites is the medical name for a build up of fluid in the abdomen. Many women with advanced ovarian cancer have ascites. There are a number of reasons why ascites can develop. For example, when cancer cells spread to the lining of the abdomen (peritoneum), they can irritate it and cause fluid to build up. Also, cancer can block part of the lymphatic system so the fluid can’t drain out of the abdomen as usual.

What I can advise now is don’t ignore chronic fatigue, bloating, difficulty breathing or unexplained weight gain. But the symptoms can be very subtle which is why Ovarian Cancer is usually detected in the advanced stage. I think I’m lucky that mine was detected at age 45 rather than in my sixties.

Nobody has talked to me about prognosis yet though. Internet resources talk about survival in terms of 1 year, 5 years and 10 years. They don’t go beyond that. Survival rates are higher the earlier the cancer is detected.

To be honest I’m more concerned about quality of life. Rather have a happy decade than years of suffering. Going beyond that I hope I’ll be able to be fit enough to play with my nieces like I used to and even travel. And I hope very soon.

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