My name is Gemma, and this year my husband Jerry and I will have been married 25 years. I am 64 years old, but my journey began in 2008 when I was 53. We got married in the knot garden in Old Basing House in 1995, as we are English Civil War re-enactors, and have a strong connection to the place. However, we left all that behind in 2003 when we escaped to France, and then onward to Nova Scotia, Canada, and beautiful Cape Breton island in 2006. We took our menagerie with us; a dog and 3 cats, and we settled in well, life was good.
Important to note at the outset that my cancer journey is complicated, in that my heart had a lot to do with what happened to me, and is relevant to my story.
In early 2007, I was working extra hours and ultimately neglecting myself, and found myself with pneumonia, and diagnosed with paroxysmal supraventricular tachycardia (PSVT), a heart arrhythmia. My consultant felt that medication would control the arrhythmia. When I saw the consultant again in 2008, I said I was concerned about a 20 pounds weight gain. I felt the heart meds meant that any extra fluid would be excreted, but he didn’t concur with my oedema theory. He spotted a protein in a blood result from the previous year, and asked if anyone had mentioned it. ‘No’, so he suggested one more test. I had an ultrasound in August, and while there they suggested a CT scan with contrast dye, saying it was because I had come a long way for the appointment. The following Monday my GP called and wanted to know ‘Is anyone taking care of you regarding the suspected tumour?’, and that is how I found out about my kidney cancer. My GP assumed I had seen the specialist and wanted to be sure someone was scheduling next steps. He referred me to a urologist in Halifax, Nova Scotia, who I saw in September. He suspected it was RCC, and would do a laparoscopic nephrectomy, which was scheduled for October.
Since Halifax was a 4 hour drive, we stayed at ‘The Lodge that Gives’, provided by the Canadian Cancer Society. I had my pre-op a week before, where I saw so many anaesthetists about my heart arrhythmia. It was all in my notes, that whichever anaesthetist was scheduled for my surgery, there was no need for me to worry. So the 20th October arrived, and we walked over to the hospital, (QE 11 a teaching hospital attached to Dalhousie Medical School) and was ready in my gown by 7am. I waited for 4 or 5 hours, and finally someone came for me, and my husband was told they would call him when I was out, so he went off for lunch. They asked if I was OK to walk, so I walked down to the OR, and was put on a trolley outside the room, and another hour passed on my own on this trolley. Finally there was some activity, mops and buckets and blood comes to mind, and a departing team with patient off down to recovery I presumed. Then I was surrounded, apologies for delays, previous surgery had over run, signed consent forms, confirmed which kidney was being removed, and a X on the back of the relevant hand.. I remember saying, but what if I got mixed up.. So again asked if I was OK to walk, so off the trolley, into the OR, and onto the OR table. Preparation was going on around me, I had a needle put in the back of my hand, the same hand with the X on it, something to mellow me. The consultant came in and asked was I OK and ready, I said fine, lets get it done, and then the mask was almost on my face, they were saying about counting down from 10, but then suddenly, ‘I’m sorry your surgery is cancelled, we will let your husband know, so he can take you home’.
So for the first time I noticed my heart was in major arrhythmia, but I was upset, crying, in a total panic over them leaving the cancer inside me. Due to the pre med, I had to be taken into recovery, and I had people trying to get me to calm down so my heart would calm down. They said it was the anaesthetist that had cancelled, as he was not comfortable with how my heart was behaving when we were about to begin surgery. After seeing so many, I had got a nervous one, but I suppose better safe than sorry. So as I began calming down I heard one of the doctors on the phone discussing me. He was trying to get Cardiology involved, because in his view the same would happen next time. This doctor was a 5th year intern, and I will always be grateful for him pushing the way he did. Once my heart was out of arrhythmia, I was taken to my own room on the ward, where my husband was waiting. They told my husband that he may as well go home, and leave me in their care. Cardiology said that they would schedule me for a cardiac ablation, and with talking to her, I discovered that my fainting since I was 7 years old was down to these faulty cells causing the arrhythmia, but that the pneumonia my first winter in Canada had somehow made it worse. I was re-scheduled for my nephrectomy on the Saturday, so the ablation was happening on the Friday. I was on the table for 5 hours, they discovered the dodgy cells were in the left side of my heart, and would require blood thinners to avoid a clot.. but my urologist didn’t want that in my system for the next day’s surgery, so the procedure was stopped.
The following morning, the team of interns came by on ward rounds, and told me my surgery was cancelled, as the OR was being used for transplants, but that I would be put in front of the list for Monday. So Monday came, I was fetched early, and straight into the OR, no time to think, or worry, and he found a confident anaesthetist. I saw my GP after coming home, who confirmed a diagnosis of RCC, 3.5 cm, Stage 1 and Grade 2, encapsulated, boundaries clear. It was a few months before I returned to see my consultant, so was happy to get the result from my GP. In the January I returned to Cardiology this time, and although it took them two tries, the 3rd cardiac ablation was successful, and that is the day my heart went quiet. My weight took about 3 months to return to my normal, but to this day, no doctor would say that it had been oedema or connected in any way to the cancer. The following year, I was referred to a doctor regarding high cholesterol, and it was the same doctor that arranged the ultrasound. So it was like a reunion, hugs all round, I thanked him for persisting, for thinking outside the box. He was also a teacher, and he said my case had become one of his case studies, ‘that protein marker had meant something’.
In 2016 we returned home to the UK, and I have had another 20 pound weight gain, but after months of tests and scans last year, they have found nothing, and the weight is stubbornly still there, but now at 64, I am more accepting of it.
What I found helpful in the early days in Canada was ‘Kidney Cancer Canada’, and Deb Maskens (their own Rose Woodward). I also looked for support through the cancer society, I went to support groups, I also spoke to a volunteer who had been there. They talk to you, and based on your history, they match you with someone (a volunteer) with a similar history. They call you to have a chat whenever you want. I also participated in the Relay for Life in our town every year, proud to be a survivor. My sister, who was outwardly quite supportive at the time of the surgery, later said I had not really had cancer, as I only had surgery, and didn’t have any treatment, and that made me feel like a fraud, but fellow survivors at RFL showed me that I was part of the survivor family. My sister also said that the 3 cardiac ablations were not surgery, even though they involve you lying still for 8 hours, and awake for the whole procedure. I also joined a group called ‘Red Hats’, and many were survivors too, but it was just about socialising, eating drinking and dancing with friends, and getting to wear a Red Hat, lots of fun.
After the first year, I saw my consultant every year, and after 5 years he said he didn’t need to see me again, but I said I wasn’t ready to let him go, and he did the same the next year, but after that he just re-scheduled me. In my final appointment he spotted a kidney stone in my remaining kidney, he was able to look back at the few CT with dye to see it was there from the first one, but was now double in size. So I came home to the UK with a mission to get that dealt with, which took some time, but that is now gone. I was in Wales initially, but now in England, and with the tests last year, I saw a different consultant, and he was quite adamant that he wouldn’t need to see me again. However, my GP has confirmed that he can request an ultrasound and chest x-ray for me every year, that it doesn’t require a consultant to do that, which has put my mind at ease.
Over the years I worry less about scans, I realise that when I get the date, worrying won’t change the outcome, when I have been for the scan, and am waiting, because then I know someone already knows the outcome, and I get a little impatient. But again, I try to not worry, until I know there is something to worry about.
On a personal level, our adventure continues, as we are living on a narrowboat. This year we are heading back to Corfu for the first time since our honeymoon, life is for living.
My husband has been there through all my medical dramas, all the times he had to work, and left me in a hospital 4 hours away, having to take care of our menagerie. Last year having to cope with my terror that the cancer was back, but he understood, he knows better than anyone that if I had ignored my weight gain back in 2008, then the story would have a different ending. If you read this far, if you take nothing else from this, you have to be your own advocate and persist until you get answers.