My Story
It’s hard to look at the woman in the photo below to believe that a few days previously I was awaiting the results of a biopsy to find out what the mysterious rash on vulva (or lady flaps to those less accustomed to using the proper medical terms for body parts!)
I got the call a week later to say could I go and see a consultant Mr. Anglolopodis (George) in outpatients’ oncology. Just hearing the word oncology would make anyone worried and when I got there and saw a Macmillan Nurse, I knew it was not going to be good news. The consultant told me he wanted to do scans MRI and CT and I have vulval cancer. That itchy rash was actually a condition called lichen sclerosis and, in my case, it was initially diagnosed as thrush. So, ladies if you do have itchy skin get it checked out!
The next month was a bit of a ‘oh my’, having to tell my mum who is an ex-nurse, and my family is not nice. And telling close friends difficult, but I have small but good circle of friends that were and still are supportive.
I had the scans and then the consultant called me in to say he could not get a clear picture and wanted me to have a PET CT scan. Which means CT scan with radiation in me ( it helps the pictures show up better). That was a traumatic day as my boyfriend’s exhaust fell off on the way to pick me up and I almost missed my appointment; they couldn’t find a vein for the canula, (not finding a vein will become very common occurrence for me, I was told by one doctor it was because I was ginger!)
A few weeks later I got the PET CT scan results. It was a Saturday; I recall thinking they don’t get you to come in on a Saturday unless it is urgent! So, the consultant said yes, it is vulva cancer, but you have a secondary cancer in your lymph nodes in your pelvis. I initially panicked, thinking that lymph nodes are all around your body. The Consultant said he could not operate due to the secondary in my lymph nodes, so he would refer me to an oncologist. My lymph nodes were 0.9mm
It is a lot to take in when you are told you have cancer. I knew someone who had died of cancer, but not my type of cancer and of course, I Googled it. It is quite rare and normally occurs in older women 0f 60+ which is not my age range. But I thought you know what, I may have cancer, but I must try and keep positive, and I know other people who have had cancer and are still here, so I was trying to keep the positive cancer stories in my head.
Radiotherapy. Before you have radiotherapy. you have a planning scan, and again they could not find a vein due to my veins being small, so I had to have a PICC line installed. The PICC line helps you have your chemo without having to have a canula and for your weekly blood tests. It helps and stops me from being a pin cushion? It felt very real now I had the line in.
So, I got my treatment plan; radiotherapy every day for 6 weeks with weekends off, and on Tuesdays I had chemotherapy and radiotherapy. The chemotherapy helps the radiotherapy, work better, so all in all I had 26 treatments of radiotherapy and 5 of chemotherapy
Chemotherapy. I thought that if you had chemotherapy, you would lose your hair, but no there are different types of chemotherapy and the type I had did not make me lose my hair which was one plus I guess! But Tuesdays were long days getting to the hospital for 8-8.30am and some days not leaving till 5.30 pm as I had to have radiotherapy on that day too. But I kept thinking it’s a marathon and I am at mile x and it is only 6 weeks. But as the treatment went on it got tough. My skin got sore, and I found it hard to walk and the last 2 weeks my PICC line would not work, so I had to have it removed – pin cushion once again! But I still have my think hair
The end of treatment. So, I had reached the end of my treatment (yayyy). My skin was so sore, burnt from the radiotherapy, but I no longer had the daily routine of going into hospital. I wasn’t on my own though, as I had my great support network of my so supportive boyfriend and my friends and family who did a rota to take me to hospital each day and to do food shopping for me and cooking me food. They were so helpful, and I couldn’t have got through it without them. Now all I have got to do is heal. Which I am still doing.
Checkup scans. I get checked up every 3 months.
September 2019; my first MRI and CT scans after treatment. I will never get used to waiting for results -I had to wait 3 weeks and it seemed the longest 3 weeks of my life. But the results were positive, my lymph nodes were shrinking from 0.9mm to 0.6mm. My skin was still very sore but my scans were good so that is positive.
December 2019; good scans, but my skin was still very sore, and my energy levels were low. I was getting very tired so quickly.
March 2020; we were now in a global pandemic. No checkup and I was put on the vulnerable list – or house arrest as my boyfriend called it.
July 2020; I eventually got to see the oncologist. I was quite nervous as I had not left the house since March except to go the garden and going into a hospital. My appointment was in the adjacent private hospital, so I didn’t have to go into the actual hospital, It was good to have the oncologist in person so he could see how sore my skin was. The oncologist just said I had radiation scars and these things take time to heal.
I thought after a year my skin would be more recovered!
Oct 2020; I didn’t get to see the oncologist in person, but I did get a telephone call. I had to have more scans; the oncologist said they were good. My skin was still sore, but he just said he would call me in 6 weeks to see how I was going.
December 2020; I got a phone call, I really wanted to be seen in person but due to Covid they were being cautious, but a call is better than nothing! I told my oncologist my skin was still sore, and he said he would refer me to a gynecologist, which was good that my skin was finally getting looked at,
March 2021; another oncologist telephone call and they were surprised that I had not heard from the gynecologist, yet so they said they would chase.
June 2021; I had a gynecologist appointment for August, and I got to see my oncologist in person. He said my skin was still very red and he was surprised that my gynecologist appointment was not till August. He was not happy with my thick skin and wanted to send me for MRI and CT scans. This was not the news I wanted to hear. Did that mean my cancer has come back? I was thinking all sorts. The CT scan came within a week of my checkup appointment which was good. I was also worrying that my scan appointment was so quick perhaps it would be serious. The scan was on a Saturday, it went OK, but now it was the waiting for results. The MRI scan was not till the end of July, so 4 weeks later, but at least was a week before my gynecologist appointment, so at least the gynecologist would have all the scan information.
Scans; MRI scans, they are about 45 mins long. I have the non-contrast ones, but I still have to have muscle relaxant and that involves having a cannula and finding a vein, which is always a challenge. It is a strange experience; you lie on the bed of the scanner and because they are scanning my pelvis and lady area you have a weighted pad across your pelvis and then you moved into the machine a bit like a conveyor belt. You have to wear headphones as the noise is very loud.
CT; scans; these are much quicker than MRI scans though you need to have a contrast solution in your veins. Another canula and they have to find a vein! The last scan only took 2 attempts to find a vein so that is good. The contrast infusion is very strange you feel like something warm is going from your head to your toes and that you have weed yourself (but you haven’t).
August 2021; another a call from my oncologist, and I got the best news; my latest scans were clear, and my skin was just thick! A few days later I got to see the gynecologist and he looked at my skin and gave me steroid and hydromol cream with a follow-up call at the end of August.
Now I hope there is an improvement, and I can recover! It has been a rough few years but I am seeing some light at the end of the tunnel!!
So why did I decide to make candles?
So, go back to October 2019 and a friend buys me a lavender candle. Lavender is great if you are feeling anxious and stressed. I was so pleased to be given the candle and that someone had thought about me. Fast forward to April 2020 I was in lockdown, watching people walk past my window, doing their daily hour’s walk and I was indoors or just walking out into my garden. I wished I did not have such a big lounge window!
With the pandemic, sore skin, and being in lockdown I was not getting much work from my job as a contract PA. The future was not looking so good. So, I got to thinking “what can I do to supplement my income?”’ Things were tight and I needed to be kept busy, and have something to look forward to. I thought of the lavender candle I was bought and how much joy it gave me, so thought I could make candles and make someone else smile!
I investigated candle-making and got to thinking, I have survived cancer so why can’t I start a business in a global pandemic? I have a future to look forward to and something positive to focus on. So I started with a lavender candle.
Candles take a lot of testing; the wick and the wax and the scent and so forth, so then set up a focus group, who gave me their honest opinion on products. By July I was ready to launch Petit Oiseau Gifts.
It has been an amazing year with its ups and downs, but I am determined to keep moving forward positively … and keep on going! Each time I get an order I do a happy dance because it means so much to me. I can pay that bill, buy some food, it’s the little things…..
So, thank you for reading my story, explaining the reason why I love doing my candles. Here’s to a future free of cancer and making oodles of candles X
