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I am Liz, 60 years young but in reality going on to about 30. I have worked all my life in the NHS as a Clinical Practitioner. I job that I loved. I used to say that the job was my karma, it was right up my street.
Now I am retired and love climbing, been creative, nature flowers animals and writing stories. I love life. I have 2 children who are adults and a lovely hubby.
The journey I never expected to take all started about the end of October beginning of November 2013. I had been fit and well, this day it was a Saturday we went to MacDonald’s and I suddenly did not feel well, I was freezing despite a thick coat and well wrapped up. I remember seeing other people wearing shorts. I never ate my meal. I think the family thought I was being funny. Anyway I went to the toilet and found it so extremely painful to pass urine. I told my family I needed to see the NEMS (emergency GP).
After been checked out by the nurse, it transpired I had a high temperature, high blood pressure, and the urine test showed everything protein +++, and blood +++. Although it was hidden blood, so the urine did not look like there was blood present, but the dip stick indicated a high level. The NEMS Dr saw me and said it was an infection, and prescribed me some medication. Told me to see the GP the next working day to get my urine tested again.
I saw my doctor and was feeling fine. My urine was retested +++ blood present still hidden. This continued for a few weeks the doctor would test the urine still +++ of blood present. At this stage the doctor said he would refer me to a specialist for further investigation, as the blood had been constantly present.
I remember saying to the doctor “That’s not necessary, its hidden blood probably nothing.” I think what compounded my views was I felt really well. I had no aches or pains nothing.
Within a few days a got a letter to attend for an ultrasound and other appointments.
I remember going for the ultrasound, a doctor scanned me then he said “Get dressed” as I was getting dressed I felt quite Gung ho. ‘Did you find anything?’ I asked. I was feeling light-hearted. “Yes we did. I would like to take you right now for a CT scan, hopefully there will be a space.” Funny those were his words, they have stuck in my mind.
I had never had a CT before and worked myself up. Lying there with a needle in my arm, arms above my head and been told about the side effects. I did not want the doctor to leave me. He said close your eyes and try to imagine you’re on a beach. I kept my eyes shut and forgot the beach, just tried to focus on my husband.
When it was finished, the doctor came and said “There is a mass on your left kidney. I will liaise with your Consultant and you will hear from him shortly.”
I can’t honestly remember how I got home. I felt like the wind had been knocked out of my sails. I felt numb, felt like I was in a tunnel. I remember crying when I got home and crying.
That was the start of the roller coaster from hell ride with emotions of anxiety and fear.
I had to go for a cystoscopy, I thought that’s not necessary because they have identified a mass. It was explained they need to look if there is more. So that was tense but it was fine nothing found in the bladder.
Then to help me cope. I found out as much as I could about kidney cancer. Why me I thought. Is it because I loved chocolate? I had a private ultrasound, so my hubby could see the alien as well.
I had an appointment to see the surgeon. My hubby and I was going to ask for the surgery to be delayed by some months so we could seek alternative therapy really looking at different foods. The surgeon said no time is vital.
This was my naivety because I felt really well and thought it could be fixed with a radical change of diet. It just goes to show until your touched by cancer I think you are naive in many respects.
I had surgery on the 19th December 2103 at 07.30. Well they told me they would ring me at the morning of surgery. I live close to the hospital. That morning they rang me at 7am and said get here as soon as possible, your first on the list.
Strange I was quite calm, I think over the weeks I had poured out my fears and emotions. I had coped to some extend by joining Maggie’s on line and that helped. I was frightened that I would not recovering from surgery.
My whole left kidney was removed by laparoscopic surgery. Recovery was speedy. I was in hospital 2 and a half days. I made sure I drank plenty and walked as much as I could.
The only complications I have had is a post incisional hernia which has got bigger but its ok. Causes no problems. I also had a post op wound infection which was sorted with antibiotics.
My cancer was Grade 3, Leibovich 3.
Not sure what all this means but the surgeon said its good.
I did take part in a clinical trial. Which I signed for pre surgery. Which was donation of tissue for research.
I have no treatment. I have yearly CT scans with contrast. Which tastes like drinking sea water. Then an anxious wait for the results dropping through the letter box.
The best advice is for people to join the kidney cancer forum it helped me so much. Joining Maggie’s on line was helpful, there I accessed on line physiological help and general support. Been open and honest with my family. Keeping a journal. I kept this going while I had the alien, wrote stories about it and drew pictures.
The worst bit was being told I had an alien inside me, that what I called it. The worst bit is the emotional roller coaster to hell you and the family go on.
The best bit is the surgeon getting it all out. Having hope, seeing spring come around again. Changing my diet quite radically. Recovering. As your recover, you see the stress melt away from your family. My hubby is a saviour for helping me cope, being there and just been great. Thank you.
I am very keen to help educating people. Hence writing my story. All our journeys similar yet different. We are all unique and have different ways to cope.
The kidney cancer page has been a lifeline when I have been stressed. There is always someone around to jolly you along or give advice. It’s a nice bunch of people thrown together through adversity. It is nice knowing there is someone to answer my concerns. I like to support people and give advice. We all help one another.
My advice is to listen to the doctors, they know what they are talking about. Get knowledge for yourself. It helps you cope. Value life. You don’t realise how important things are until you get the diagnosis.
Have you dealt with a urological condition yourself? Share your story and inspire others to talk openly about urological health.