My Revelation on Instagram

I bit the bullet & revealed myself, sort of, on Instagram. My real name is Shanti & I love the fact that in Sanskrit it means peace. I dislike confrontation or conflict, am always seeking peace. I’m rather a passive soul.

Just uploaded a picture of me at age 2 smiling at my beloved Papa who was photographing me back in the seventies. He loved me so & I miss him so much, especially during this cancer journey.

I really do want to get back to fitness & be there for my nieces. That’s my most ardent wish. Hope you’ll join me on Instagram too as I post more frequently there under Singapore Actually.

I appreciate so much all the followers and their love and support on Instagram. Really boosts me on my journey back to health.

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Feeling Optimistic

My oncologist confirmed a week ago that I have stage 4 endometrial cancer. She also mentioned that my tumour type shows I’m not a good candidates for immunotherapy which is a concern. I have what is called microsatellite instability.

I was not as steady about it all as I am now. I was gripped with fear. It took time to digest. I’m going with my instinctive feeling that things will be ok and the fear just eased.

I’m feeling optimistic as second line chemo has not caused a scary side effect that my oncologist was concerned about – hallucinations. Somehow being such a control freak, not being in control of my mind seemed to be a hard prospect to handle. Another concern of hers was my bladder bleeding, but so far so good. I’m hospitalised during chemo and given bladder protecting drugs. It’s a big downer to me to be hospitalised as I tend to get bed sores being confined to the hot rubber bed but I’m so joyous the day I’m discharged. Makes you appreciate your home sweet home even more.

I only had bone ache around the shoulders, lower back and spine 3 days after the nuestala booster jab that was given in the abdominal area to boost my white blood cell count. I’m lucky to have a skillful oncology nurse to administer it to minimise the pain. At least the expected side effect of the bone ache must mean my bone marrow is working to produce those white blood cells.

I know it’s silly to feel sadder about loosing my hair again, plus my eyebrows and lashes & I am hopeless at makeup. There’s this worry that it won’t grow back because my lashes and brows never grew back as dark or long as they once were. Miss that. It was so much part of my identity. Dark defined brows that I never needed to groom or never felt like I needed to anyway. My hair came back totally silvery white, with the black only coming back a bit later. I’ve never once coloured my hair and I don’t want to start now especially considering the dyes could be toxic and plus the recurring cost.

I have lovely simple pleasures like my books and journal, but my greatest joy are the little ones in my big family.

I’m also dreaming of travel to the beaches of New Zealand or the scenic lush greenery of England, Ireland or Scotland. America is on my mind too although the long flight is the one thing that puts me off. Always wanted to see the majestic sequoia trees and the Parks and coast of California. Just some landscapes that are filling my daydreams. It’s always nature and cold weather that make it worthwhile to endure the hassle of travelling.  Wish I could go hassle free this time.

 

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Trying Not to be Scared

Honestly I can’t tell if it’s better or worse not knowing the staging of my endometrial cancer. Perhaps it’s better not to know. The Doctors have admitted that my situation is so rare that there are some things they just don’t know. What they can tell me is that it’s locally advanced endometrial cancer. The bad part is that part of the cancer cells point to endometrial sarcoma as well, that means the tissues are involved.

The thing that scares me the most is that the tumours spread not only to the ovaries but to some place far off, my small intestines.

Wish I could know for sure that the cancer cells are eradicated but I guess that’s what second line chemo is for. Not encouraging to hear that usually with second line chemo you are already showing resistance to it. And I’m told there will be a standby treatment of Immunotherapy. This is experimental treatment with lots of unknowns.

I am also fearful that my oncologist says they have to watch me for hallucinations with the new chemo drug Ifosphomide. Loss of control truly scares me.

Ok had to get that all out if my system & focus on living and dreaming big. I’m dreaming of being able to carry and read to my nieces again. I’m dreaming of being able to be fit again and run around with them.

I’m also dreaming of travel to places in my dreams like the English countryside, the lush green of Ireland, the beauty of California, her majestic sequoia trees, the Ocean and the pristine air and snow of the Swiss Alps.

One of my favourite trips was to Boston and mainly because it was my first time experiencing snow. Fresh falling snow and thick cover on the ground. I was so mesmerised. I also fell in love with New Zealand’s South Island and would love to explore more of her stunning beauty, perhaps the North Island with those breathtaking Lord of the Ring scenes.

These are my topmost dreams and I can’t wait for them to be fulfilled once I’m done with chemo in May 2018. Meanwhile I will keep fantasizing and visualising all the possibilities.

 

 

 

 

 

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Fighting Cancer A Second Time

I never thought I’d be here again, but here I am fighting cancer a second time. I was so heartened to read all the kind encouraging comments in my absence. Thank you to all the kind souls out there –  you truly give me strength.

I was shocked to discover that I had a recurrence. I had just been regaining my fitness and got into a new routine when my second annual pet scan revealed a tumour near my small intestines. Also my CA125 scores that had been very good, 4 or 5, way within the normal of 35 and had given me hope. However this time it had spiked to 119. Still I had hope that it was an anomaly.

Since then I feel like I’ve surmounted the Everest, undergoing my third cancer related major surgery. I am so incredibly thankful that I didn’t need a stoma as my colon wasn’t affected, just my small intestines of which 14cm was removed & the healthy parts stitched back together. Resected.

It’s now been 2 weeks since surgery & I am home recouperating. So happy to be out of hospital after an 8 day stay. I never do well in hospitals and always my recovery is rapid once I’m home. Home sweet home – nothing beats it.

I have to confess, I’m more hopeful in the day time, but worries come to me at night when I’m alone in the dark. So what better way to cope than to start writing on my blog again & connecting with all the kind people around the world. You truly keep me going.

By the way my name means peace & I hope writing will afford me more peace of mind.

 

 

 

 

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Trying to Find My Way Back

Haven’t been able to get back into a blogging cycle but have been very active instead on Instagram – pictures seem easier.

Must get back to my words though – they help me feel like I’m living a more aware and full life.

I have been cancer free for almost 6 months following radiation. I don’t know exactly when  I can say I am truly cancer free or a cancer survivor. I guess from current literature I can’t just yet.  It’s a bit hard when I still have the cathaport in my chest.  Can’t wait to get it out but my oncologist says to wait  two years at least. But another part of me is in no hurry as my ‘bravery’ (was never and never felt brave and think it’s perfectly ok) with procedures has flown out the window and I don’t want to undergo any more if I can help it.

My eyesight hasn’t been very good lately which makes it a bit harder to read and write the two things I live for. Everything is quite blurry and I’m not surprised as it’s a long term side effect of chemo. Doesn’t stop me from playing with the two little angels in my life though. They make life worth living and I just wanted to put this continually out there in case I don’t get a chance to tell them when they are old enough to understand.

Thank you for everyone who has left a kind word and those who have been unkind I’ll just try my best ignore you (sigh…it’s hard sometimes).  Wish the internet, no, people, could be kinder though.  I don’t understand why anyone would put energy into spreading unkindness or negativity. It’s even worse than spam. Spammers just wanna sell their products but at least that doesn’t hurt you. It discourages people from sharing anything at all and I’m grateful to all the other bloggers/writers out there who share their life with me and people who take the time to leave kind encouraging words.  Wanted to state again how grateful I am to you.

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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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