Not sure how WordPress works anymore as I haven’t written for so long, everything feels strange. I was discouraged as I spent so much time on deleting spam and updating the tech stuff.
Just want to write to offload some feelings. A bit of the fear is back as I threw up in my partner’s car earlier. Are my intestines acting up again? I feel something not quite right within. Perhaps it’s just intense stress from my mum being hospitalised. Glad she is on the mend as it’s all the matters to me.
Stress may also be building up as I missed my last monthly tumour marker checkup mainly due to the cost factor. I feel guilt over the cost. Anyway, I’m not feeling totally confident as I was before the throwing up incident. Hope it’s unwarranted nerves and I’ll get the clear again on Thursday afternoon.
It’s ridiculous that I can’t rid myself of these intense feelings of guilt which isn’t helping me feel well. I can’t afford to have this type of unnecessary stress. Tried one minute of meditation with an app my cousin D recommended called Headspace. I need to do more of that. Grateful for the time I’ve been having with her and the little ones.
Thankful also for fulfilling another item in my bucket list or more something my dad wished for but never got to do. (A big regret of mine) A trip to Britain. Had a major throwing up incident on that trip as well but at least I made it.
No one realises the struggle of invisible illness. I need to advocate for this more as I’m sure many go through a similar anguish. That you may look perfectly well on the outside but that you struggle on the inside, in my case with chronic fatigue and intestinal issues. Chronic fatigue is so hard to explain and often I’m sure people think I’m just lazy. To me it’s a big injustice and frustration to be thought of that way. My mind and heart want to do so much but often my body can’t cooperate is the best way I know how to explain it. It’s like a constant intense jet lag and your brain is in a fog always. You are able to process conversations perhaps some hours after you’ve had them or only able to process the answers to questions then. Your brain is just not as sharp as it used to be and the deterioration has happened only since you’ve had chemo.
The most scary thing to me is the deterioration of my eye sight as reading, writing and photography are things I love so much. I can’t imagine life without books, journals and photographs. And I love nature and scenic places. My power has gone from 100 as a 6 year old when I was first diagnosed to 1100 (-11) before chemo to 1300 (-13) now. The optometrist has advised me to stick to my current power though to minimise on migraines. Keen to hear from others with severe myopia and astigmatism.
I feel choked by fear and I felt that by writing it down I’ll be able to loosen the grip. Haven’t written in a while, but have been very active (more like addicted) on Instagram, using that tool to share snippets of my thoughts as well.
I promised myself that I wouldn’t let fear rule me, but often some things are out of your control. This cancer journey plus my inherent insecurities do that to me. I fear that my time is limited considering how much I want to do and that too scares me. I feel like my body is holding me back or perhaps it is more my fear that I will ‘break’ something in body or worsen things if I do too much. I never had this kind of fear before the cancer diagnosis and I don’t like it.
My good friend E encouraged me to write a book which she and I, know I have in me but I think she has a whole lot of confidence in me than I do in myself. She felt that I should share my knowledge of how the cancer has affected me, but truly I don’t feel like an expert. Although that’s rather silly of me as there are several things that are good to know beforehand to make the journey easier and I know them now. Simple things like having an item of your own with you during chemo like a soft shawl. Even more importantly, the signs not to miss in order to catch the disease early. I still can’t quite believe I’m a stage 4 cancer patient as some days, in between my doctor visits, I don’t feel at all like one.
I have overwhelming fears about my tumour marker CA125 rising and as a result fearful procedures that follow including the dreaded MRI and surgery. I try not to think of any of it and pull myself back into the present moment focusing on the loves of my life and how much there is to live for and enjoy right now.
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.
Posted in Cancer
Tagged cancer thriver, childhood, childhood photos, endometrial cancer, gynaecological cancer, Me aged 2, my personal story, my thoughts about life, Revelation, Stage 4 cancer, stage IV cancer, Stage IV cancer thriver
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.
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.
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.
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.
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)
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.
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.