Let’s help make Breast Prostheses together!!

When I was first diagnosed, the prognosis changed my life for it exposed me to the privilege of ignorance. Ignorance about the importance of breast cancer awareness. Ignorance of the effect breast cancer has on women. Learning that I may have to undergo a mastectomy made me realize how much I identified my feminity, my dignity, my worth as a woman with my body. 

When women undergo a mastectomy (removal of entire breast) for treatment of Breast Cancer, some opt to have reconstructive surgery (if they can afford it), and others rely on artificial breast prostheses which is normally worn over ones’ own chest to enhance the overall size of the breast and to create a fuller appearance. It can be worn with a regular bra or a post-mastectomy bra. They could be made of silicon or a simple knitted alternative that is low cost and easier to maintain.

Luckily I did not have to undergo a mastectomy, but in my interaction with women who had the procedure done to save their lives I realised that not only is breast reconstruction an option a majority of women in Uganda cannot afford, there is also no known local provider in the country to make and provide breast prostheses, a fact that makes the lives of ordinary women post breast cancer somewhat difficult.  I did find out, however, that the Uganda Cancer Society (through Cancer Aid Organization) occasionally freely provides knitted breast prostheses: but making them requires renting space for the duration they’re being made, renting the sewing equipment, on top of having to rely on donations to buy the materials to make them.

Stay with me, this is where I get to the point.

Cutesy Knitted Breast Prostheses – the heart of my fundraiser

I’d like us to help. Help raise money to support the Uganda Cancer Society in acquiring the much needed equipment to locally make these prostheses. Women deserve to have options post breast cancer treatment, let’s give them that.

With this fundraiser I’m hoping we can raise enough money to help the Institute purchase their OWN equipment that they can use to make these much needed items.

This project is near and dear to my heart. I know what it feels like to worry about losing a part of oneself, scared that you’ll never feel normal again. It was at the forefront of my mind when I was first diagnosed. If we can help get this ball rolling, then we’d be doing so many women in Uganda an immeasurable service.

Before I end, I’d like to thank the below for their assistance towards this project. Words cannot describe how grateful I am to have your support:

• Switch Media
• Gala Image Consulting
• Maisha Ni Upendo

More on the Lumps Away Foundation website: www.lumpsaway.ug

DETAILS TO DONATE:

Account Name: Lumps Away Foundation; Eco Bank, Rwenzori Towers; 0120026128817801

Mobile Money:

MTN +256 772 (0) 772 197 187: AIRTEL +256 752 (0) 752 993 950

Campaign Funding Link (Goes live 19th Oct): https://akabbo.ug/campaigns/lets-help-make-breast-prostheses-locally/

To the fathers here…and not

Today is Father’s Day. I’ll be honest, I had no freaking idea. Thank God for social media though, my news feed has been flooded with compliments, words of admiration, remembrance and love for fathers everywhere. It’s nice to see ‘the other parent’ celebrated.

I’m a believer in giving praise to one to encourage good behaviour. I personally think the reason I enjoy cooking fish stew is because my mother used to praise my stew (I mean, I don’t even particularly like fish). When you acknowledge something that someone does well, even if there’s room for growth, you’ll be surprised at how much extra work they’ll put in to be the epitome of perfection. A friend of mine who’d just become a father once shared that there is a special type of pressure that comes with being a father, and even though he knew his kids had a closer bond with his wife, his sense of obligation to do right by them never waned and he admitted to liking it he was told he was a good father. So yes, I’m all for heaping praise on the dads in our lives. Never stop!

‘because you’re so GOOD at it!’

Some of us have only memories to hold on to. My father passed 5 years ago and I’m sure like many of my fellow ‘orphans’, it’s not only in the bad times that we miss them, but also and sometimes mostly in the good times. I always imagine how happy my father would be with every little success I achieve. Like me, he had a flair for dramatic so I miss hearing his inevitable “Wow! That’s excellent. Fantastic Chichiba!” (that’s not a made up word, that was his nickname for me). So today, let’s remember to honour our dear departed fathers (even though they’re probably watching us from heaven with their palms on their foreheads), because they did good, and we have to celebrate that.

Happy Fathers Day!

 

BALD – TO BE OR NOT TO BE

So yesterday, I decided to trim my hair after washing it and I realised that my hair has come such a long way from when it first started falling off during my treatment.

I started to notice my hair getting flaky a week after my second chemotherapy treatment. It’d fall off in little strands, sometimes being blown off when the wind was too strong, attaching itself to my clothes, the chair, etc. My sister used to joke that if anyone was looking for me, they should just follow the trail of hair.  It was when I was lamenting to her one day about how I’d stopped combing my hair because I was so scared it was falling off so fast (I may have also plucked off a fist full of hair in the process) that she recommended we go to the barber and get it all chopped off.

Patches where my hair once lived 😦

I went with both my sisters that day. I think I was prepared to sob my heart out because I REALLY loved my hair, but they were both so positive and jovial, that I stopped stressing and went with it. It was an easy job for the barber, I just sat in the chair and said ‘ALL OFF’. 2 minutes later, I was officially bald.

I have a baby face so going bald literally wiped any trace of ‘adult’ from face. But I loved it! Whilst going to work, I wore scarfs and wigs because at the time not many people knew I was in treatment. I became quite good at the scarf thing, I’ll have to share a collage of my different looks one day. But on weekends, I was bald and free! My African sisters know the stress that comes with taking a bath when you don’t want to ruin your hair, having to wear a hair net to go to sleep, figuring out how to comb it, going to the salon every two weeks for treatment….I mean, hair is a whole new culture for black women.

Looking back, as much as I now enjoy my new curly mop of hair, I kinda miss my bald head.

not bad, eh? 😉

When I’m talking to someone struggling with hair breakage and whatnot and she’s not sure if she should do the big chop, I always say “YES, DO IT!”. I know mine wasn’t voluntary but if I still managed to get entrance to bars without being accused of being a minor, then surely, you will be fine. Granted, you may get the occasional, ‘You look like a child’ remarks, but otherwise you’re good. As women, we always worry about how we’ll look without our hair, but to be honest, you will probably look really dope when you do. A bald head sort of gives one an air of mystique, hair will always grow back (yes, even African hair at its own snail pace), …aaaaaand you’ll get to enjoy your showers.

 

COVID-19 – thoughts and tips

I’m one of those people who find it easier to write when there is an allure of sadness around me. There’s something about the feeling of helplessness that gets my creative juices going. When I used to write poetry (many eons ago), I was always the girl that wrote about a broken heart, or a city in ruins…

COVID-19 is making me sad. So I’ve been writing more. The seriousness of the disease, the fact that we weren’t (and still aren’t) ready to deal with its ramifications, the impact it’s having on people’s lives, the fact that there are people who are finding ways to exploit others in this difficult time, there’s so much that’s concerning about this thing.

Obviously, because of my medical history, I may be vulnerable to the severe effects of the coronavirus. So I’ve heeded to ALL the recommendations made. I intend to continue to do so even when the lock down is lifted. Many other people with pre-existing conditions are genuinely concerned about this and while there are no specific recommendations, it’s important to observe a level of seriousness to the general guidelines provided. It doesn’t hurt to be paranoid!

Below are the general tips that I thought I’d share (thanks to the www ofcourse):

• Wash your hands frequently with soap and water for at least 20 seconds because it’s one of the best ways to kill germs on your hands and prevent the spread of germs to others. If soap and water are not readily available, use an alcohol-based hand sanitizer with at least 60% alcohol.
• Avoid touching your eyes, nose, and mouth because if you picked up the virus, you could infect yourself by allowing the virus to enter your body.
• Avoid close contact – being within 6 feet (about 2 arms-length) of anyone, especially people who are sick, coughing, or sneezing. (I’d recommend you avoid close contact with people you don’t live with)
• Cover your cough or sneeze with a tissue, then throw the tissue in the trash, or cough or sneeze into your elbow.
• Avoid shaking hands.
• Stay at home as much as possible and avoid gathering in groups of more than 10 people.
• Stay home when/if you are sick.
• Clean and disinfect frequently touched objects and surfaces daily using a regular household cleaning spray or wipe.
• Avoid non-essential travel.
• If you are a cancer patient, survivor, or caregiver, talk to your cancer care team/doctor about whether there are any additional precautions you should take.

 

We can never know where life will take us.

“My momma always said life is like a box of chocolates. You never know what you’re gonna get”.-Tom Hanks in Forrest Gump

When you get sick and get better, that’s supposed to be the end of the matter. For me, it was the beginning. I found myself suddenly thrust into the spotlight due to this blog, an advocate for cancer awareness and in the process, the founder of my own cancer focused company.

I found myself doing more T.V interviews

I saw my face and my story appear in newspapers

I interacted with women with mental health issues to forge the bond that united us. Because boy, did cancer wreak havoc on my mental health. 

I was overwhelmed. I was scared. This was unfamiliar territory I had been thrust into but I learned something very important that I want to pass on to you.

If life puts you in a position to help people, use it. We are each of us ambassadors of various causes so pick yours and don’t look back. 

I’m going to need your help

First of all, I want to thank everyone who has, through this blog, been a part of my journey with cancer and provided me with emotional support and your prayers.

I thought this chapter of my life had ended after learning that my cancer had gone into remission. It hasn’t. It’s difficult to be touched by death, brought back to life, and forget the other women who have experience or are experiencing the trials I underwent.

I have therefore started a company called the Lumps Away Foundation to raise money to provide locally made prosthetics for women who have undergone mastectomies.

Official Lumps Away Foundation Logo

There are none in Uganda and women who need them have to have them imported

I shall be organizing a fundraising drive and quite forgot about my international readers who may want to contribute to this important cause. Please subscribe to follow this blog so I can keep you updated when the fundraising drive begins.

In the meantime, I shall be posting regular updates about what I’ve been up to up till this point.

I was interviewed by a prominent local news station, NTV, after my blog caught their attention. Here is the link to the interview: https://www.ntv.co.ug/shows/pwjk/PWJK–A-Personal-Story-from-a-breast-cancer-Survivor/4542630-4679008-d8btu7z/index.html

If you’re in a country like mine where data is as expensive as a yacht, please install ‘ClipGrab’ on your desktop which allows you to save videos and watch them as regular movies.

There shall be a few more posts to keep you up to speed on my advocacy campaigns before we get to the real business of looking for $$$

Take Me Home

That is is the title of my very first recorded song. (Yay Linda!)

I’ve always loved music. I sing in the car, in the shower, in the kitchen,….if I’m not singing I have music playing.

Recording a song is something I always wanted to do. It’s one of those things that I told myself that I’d do one day. But I never acted on it.

Getting diagnosed with cancer reminded me that I will never have enough time to do the things I tell myself I will do ‘one day’. It’s now or never. And so one day, just after I’d started chemo, I started writing words I was feeling. I then called to make an appointment with a producer, Kaz Kasozi, one night while I was in bed, eager to get my foot in while I still had the nerve. And so the minute I felt well enough, I went to his ‘Little Room Studio’. I was by myself, still unsure of what I was doing, apprehensive of the fact that someone who’d worked with professionals would not want to work with me. But he was so easy to work with it made the process worth it.

And finally, 4 sessions, 5 months later I had a song!

Initially, I made this song for myself -as a reminder of what I’d been through. As a token to myself for going through it. But now, I’ve decided to share, and I hope that you appreciate the meaning behind this song, and that it touches you, and makes you feel things 🙂

Please share share share!

Links (I’ll edit as more links become available) 

Available on

YouTube

Sound Cloud 

Amazon

itunes

Google Play

http://phonofile.link/take-me-home-1

 

 

 

A sigh of relief

5th May 2017. The day I was diagnosed with Breast Cancer. My Cancer-versary.  Anyway, I still remember this day like it was yesterday. The bad weather, the excitement I had for my evening, and then Baaam! (The Diagnosis)

15th April 2018. The day Dr. Okuku finally said the words I’d been dying to hear as he looked through my test results, “Linda, you’re ok, you’re free of cancer. Relax.”

I’d been waiting for test results from Nairobi for about 5 months. They call it a FISH test. I’m going to get a little technical here. My cancer was ER+ (estrogen-receptor-positive). My cancer’s growth was being fed by estrogen hence the need for hormonal therapy for a while to block the source of food for my cancer. (I’m still on this treatment). So to determine if I’d need another specific type of treatment, my HER2 protein levels also needed to be checked. Depending on what the HER2 result was, I’d need to go on another treatment for a whole year. The doctor had previously mentioned that I’d probably have to estimate 25k$ for this treatment (I always hoped he was exaggerating).

Now, the not so good news is the results were ‘Equivocal’. This basically means they are non-conclusive. It could be because the tissue had been kept for such a long time. The good news though was that this test was the final ‘just incase’. I’d already done all the necessary things I needed to do for my Stage 1 BC; surgery (double check) – chemotherapy (check) – radiotherapy (check) – hormonal therapy (still on check) – meditation (this is an extra 🙂 ) According to Dr. Okuku, the storm is over.

you know whamsayin’

I had been having this nagging feeling for a while – “What will I do if the FISH test comes back positive?” It’s something I’d think about almost every night. So I was mindlessly glad to finally sleep well that weekend.

If you see me smiling to myself, don’t ask questions, just fall in. I’m happy. My life’s button just went on reset and I’m going to use it well.

Even though it’s officially over, I still have loads to share so keep an eye on my blog 🙂 I love you! (Blergh, that sounded off. I don’t know how white people say it so comfortably)

 

 

‘Put a cork in it’

Ugandans are lovely people. So much so that they aren’t aware of the thin line between asking a question in innocence and being downright rude. This is a typical scenario between two people.

Innocent Ugandan: Eh Emily, long time no see.

Emily (obviously): Yeah, I’ve been busy with work and stuff

Innocent Ugandan: Oh okay….But what is happening to you?

Emily: What do you mean?

Innocent Ugandan: You’re really getting fat

Emily: (visibly uncomfortable) Hmm….Yeah, maybe it’s peace of mind

Innocent Ugandan: Bambi its too much. Oba you’re also over eating? Do you even walk?.

Now, this could go on for a while until someone interrupts the conversation or Innocent Ugandan runs out of inappropriate things to say.

Unfortunately, this is not considered rude in Uganda.

I can’t count how many people have asked me whether I eat with a straight face. And it’s disappointing that they don’t get the sarcasm when I respond, “No, I survive on a strict diet of meditation and water.”

Where am I going with this?

The day before my first chemotherapy treatment I was a mess. I was supposed to have started a week earlier but couldn’t because my immune system wasn’t strong enough to handle the medication. I’d lost a lot of weight (shocker) after my diagnosis and surgery, mainly attributed to the worrying and stress, so on top of everything else my mind was fraught with worry about what the treatment would further do to my already frail frame. I remember I was at work, trying to get my affairs in order before I had to leave. I’d spent my lunch break at the hospital getting tests done and the doctor had already prepared me for the damage that I should gear up for. To be frank, I was scared.

And then, this girl I used to work with came by to the office and she’s like, (in typical innocent Ugandan mode) “Eh Linda, where have you been? It’s been a while! Naye, is it just me or have you lost weight. I think maybe you’ve stopped eating…..hehehe”

Dear reader, my mind went blank. I only had one thought – ‘It’ official, chemo is going to kill me!’ I remember she was smiling, and I was just looking at her. I felt suffocated, hot, constipated even, it’s hard to describe the instantaneous shift my body took. I finally understood what it felt like to get a panic attack. My fingers started trembling so I left my desk and walked to the ladies room. I broke down. I couldn’t even drive myself home that evening. It was the perfect scenario of ‘Great, just what I needed to hear!’ (PS: this is sarcasm)

My point is this. Let’s be careful about the comments we make to others. Sometimes we make them in jest and it’s all good. But other times you have no idea what demons people are dealing with. So the next time you want to make a snide remark about someone’s weight, hair, clothes or mood, ask yourself , “Will my ‘clever’ remark add value to this ones life or Am I just being a dick?” It’s usually the latter.

Such a tough decision

Surgery no.2 – Part 2

It’s a strange feeling. To be so relieved about something yet worried that maybe another option should have been considered.

I woke up groggy and dry mouthed, my mum and sister’s friend (Nice) hovering over me. I’d hardly opened my eyes when I heard Nice exclaim, “Letitia, you still have your breasts!”

I consider myself very lucky. After the swelling had gone down from the second surgery, one can hardly tell that I’m a breast cancer survivor. No, I’m not posting any boob selfies. You may have to wait for my phone to get stolen – I’m sure the thief will leak them, they’re quite a number. 

So this what happened. It appeared that most of the cancerous tumor had been removed at the first operation. And after I’d started hormonal therapy (a life saving pill, called Tamoxifen, that is now  my daily ritual), any possible growth that could have occurred was hindered. Therefore, when Professor Wasike and his team ‘dug’ in, there wasn’t much to remove hence not necessitating the mastectomy that I’d been dreading. Better still, lymph node samples were removed from my armpit on the right side and the tests showed that there was no spread. The surgery was a big success!

Sometimes I read up on recurrence rates and I can’t help but wonder if I shouldn’t have just gone with the double mastectomy route, you know, like Angelina Jolie. But my doctors tell me there would have been no basis for that, that I should count myself lucky: It was caught early and it hadn’t spread. I should count my blessings and live better.

And so I did, and still do to this day.