So… let’s go back to Saturday, 27th December 2020 Cough, Cough, Cough!! Even chatting makes me cough “Fiona, you had better get a Covid Test” my husband said to me. “Go online to see where you can get one done today.”
I am now driving to Galashiels… Jeezo!! 30 miles away!! but I am cosy in my wee Mini… DONE…”Your results will be emailed to you.”
28th December 2020 Cough, Cough, Cough, It’s just a cough, it will go away… Covid Test is negative; the result was emailed to me at 05:21 am… Cough, Cough, Cough, It’s just a cough, it will go away…
4th January 2021 Cough, Cough, Cough… The electrician is in today he puts on his mask and asks me “Have you been for a Covid Test for that COUGH?” “Yes” I reply “It was negative, it’s just a cough, it will go away…” “We will start to call you CORONA FIONA, but I will keep my mask on just the same.” He goes about his work while I try to stop coughing. Cough, Cough, Cough, It’s just a cough, it will go away… But I can’t stop coughing…
11th March 2021 Still coughing, it had been 3 months now… I phone the doctors… I spoke with a nurse who suggested that I get a nasal spray… The nasal spray wasn’t helping my cough. The nurse sounded my chest with her stethoscope; she mentioned that if the cough did not go away, they might send me to the hospital for a chest X-ray. After 2 weeks of using the nasal spray there was no change to my cough, the nurse now suggested (in a telephone consultation) that I should get cough medicine for a chesty cough and to keep in touch with my progress…
April 2021 My cough was getting worse, and I had started wheezing now as well. I phoned the doctors; “I think I need that X-ray… I am wheezing now…” I was told that an inhaler should help…
6th May 2021 My chest X-ray was at the Royal Infirmary Hospital, I drove myself there not thinking I would need anybody with me. Little did I know… I had been coughing since 23rd December 2020
The doctor told me they could see something that might need an antibiotic to clear and said, “We would like to do a CT scan while you are here,” “Oh! Ok” I said. “The CT scan will give us a better picture of your lungs…” The doctor came out to speak with me and told me my X-ray and scan results will go to the weekly meeting this will be discussed with the board of experts and that my own GP would be in contact with me regarding the results. At this point I have no idea if it’s good news or bad. The doctor just said he thought the next step for me would be a biopsy… to which I said “BIOPSY?” “Are you saying I have CANCER?” “I can’t comment on that, your results will be discussed and given to your GP” said the hospital doctor…
I call my husband once I am dressed and out the hospital and, in my car, in floods of tears I tell Chris…”I MIGHT HAVE CANCER!!”
11th May 2021 Consultant, Royal Infirmary, Edinburgh… We sit down to discuss the results and look at the X-ray to find a tumour on my left lung… Next step is a BIOPSY to find out more about the tumour…
18th May 2021 Ultrasound at the Royal Infirmary (Biopsy from my neck) I am lying down while the doctor explains to me what she is about to do. I just remember thinking she is good at her job, I knew she was digging about my neck area, but it was not sore in any way (of course she had numbed it). My biopsy needs time in the lab to determine whether the cells are cancerous. Cough, Cough, Cough, It’s just a cough, will it ever go away?
20th May 2021 I phoned the Oncology nurse to say I am a wee bit swollen where the biopsy had been taken, she reassured me that it was my body’s natural response. I also asked about tomorrows X-ray she said, “It’s not an X-ray it’s a CT Head Scan we just want to tick everything off as you had said you have been getting dizzy spells.”
21st May 2021 CT Head Scan at the Royal Infirmary; Chris drives me to the hospital, and I get a bit jittery, he said something to me, I took it the wrong way and burst into uncontrollable tears… Just back at work after my scan it is all becoming too real… My boss asks me how it went I burst into tears again… I was thinking I need to re-do my eye makeup now…
24th May 2021 Royal Infirmary for a whole-body PET scan… The PET scan uses a mildly radioactive drug to show up areas of your body where cells are more active than normal. I remove my jewellery and other metal objects such as my wired bra, hair clips etc. and given a gown to wear. One hour before the scan an injection of radioactive liquid called a radiotracer is put into my arm through a cannula, then left alone in a room to wait for the hour before my scan. The scan itself takes about half an hour. When I am finished the radiographer says as a precaution, for 6 hours after your scan, keep any time you spend within arm’s length of pregnant women, babies or young children as short as possible. I said, “My husband is waiting in the car for me” he replied, “Sit in the back seat away from him” “Really??” Like a taxi…
28th May 2021 Royal Infirmary OPD3 (outpatients department) for biopsy results. It’s CANCER!! It’s time to tell my family; Chris drives me to my mums… Cough, Cough, Cough, It’s just a cough, will it ever go away?
July 2021 Collected Entrectinib a targeted drug for Ros1 patients (non-small cell lung cancer) this also treats other parts of the body that the cancer has spread to, in my case my brain as well as my left lung. I also have fluid around my heart (pericardial effusion) that they keep an eye on with an echocardiogram and to top it all I need to inject blood thinners every day into my legs and stomach alternating each day…
September 2021 Can’t drive anymore (surrender my license docs orders) because I have had mini strokes in my brain… I didn’t know I had had mini strokes just shows you what we deal with on our cancer journey…
Now we jump forward to July 2022 Entrectinib is not getting through the blood-brain barrier therefore my lesions are growing… it’s decided that I have to have whole brain radiotherapy over 10 days and a mask has to be made… I will lose my hair (I did it started to fall out after the last day) now taken of Entrectinib and offered Apixaban blood thinner instead if injections which is good as my thighs and tummy are all bruised with the needles…
August 2022 (Western General Hospital) Once the radiotherapy is finished I start on a course of chemotherapy in the December after that I go onto maintenance chemotherapy, into the hospital for one day repeated every 3 weeks… My lung and brain respond well so I take a break from October 2023 to End November 2024 when I then go back for radiotherapy on my left lung my lung (one zap to my head) Mon to Fri for 4 weeks finishing 20th Dec 2024
Now I am waiting for scans in March 2025 to decide what’s next… Throughout this time, I have felt sick and had diarrhoea whilst on Entrectinib not all the time… I have had swollen ankles and eyes from chemotherapy… I lost my appetite, taste for food and lost weight all whilst on chemotherapy… Also felt tired after my whole brain radiotherapy, lost my hair but it has grown back… I have now put weight back on and feel normal as I can be, but I walk with a wobble (not always a straight line) we think this is a side effect from the whole brain radiotherapy… The journey continues…
