Cancer is always at the back of Debbie’s mind. She says she’s quite a strong, positive focused person but that’s because she’ll do anything to protect her family, particularly her two grown-up children. Debbie puts a brave face on things but dreads going for scans and blood tests and tries to throw myself into distractions. Thank you for sharing your story, Debbie
I was living life to the full, worked in a bank, enjoyed going on holidays and spending time with family and friends. I had been diagnosed with systemic lupus erythematosus and pernicious anaemia in my early twenties (I’m 56 now) both are autoimmune conditions and well managed.
I started getting waves of nausea during a holiday abroad in September 2017 as well as an on/off temperature, pain down my left side that radiated to my back and a general feeling of being unwell. Not long after we returned I was admitted to hospital with a kidney infection and put on IV antibiotics for five days. They were about to start me on oral antibiotics so I could go home, but a few hours later I started getting horrendous abdominal pain. An emergency scan showed a rupture of what was thought to be a benign hepatic tumour which was attributed to me being on the contraceptive pill in my earlier years.
The next day I was sent down to the emergency radiology theatres where I assume they cauterized the bleeding and stabilized it, but the growth would still have to be removed through a liver resection. This would involve major surgery and time in intensive care. Because of the kidney infection and then all this happening I was in hospital for about a month in total. Cancer wasn’t brought into it at this point and doctors were expecting a positive outcome from the surgery, but knowing I was quite poorly and in need of major surgery hit me and my family like a ton of bricks.
I was in a little preoperative ward prior to the resection surgery when a doctor told me it had to be cancelled as there was no ICU bed. I’d built myself up for the surgery so it was quite distressing, not only for me but also my family. The doctor enquired if the Macmillan team had been in touch for support. I thought he had got me mixed up with another patient and never questioned or challenged him on this this, but in hindsight I wonder if they did actually suspect cancer at this point!?
A short time later (possibly a week) the surgery was rescheduled and I was admitted back to the preoperative ward but it was once again cancelled. My fear was that I’d have another rupture or something, so I used my private health insurance through work. Professor Lodge, my consultant, said that as I already had autoimmune conditions, I could also have autoimmune hepatitis and they would look at that after the surgery which would take place mid December. I had a rough Christmas and at points wondered if I was ever going to get better, but with the support of my wonderful family and friends I did!
A second tumour was discovered on my liver during surgery. Unfortunately both had been cancerous
At my follow-up appointment in January 4th 2018 Professor Lodge said they had discovered a second tumour during the surgery, it had been hidden by the much larger ruptured one. Unfortunately both had been cancerous, but they were really happy with how the resection had gone. I would now have regular scans and checkups and shouldn’t dwell on the fact that I had cancer because I didn’t anymore. Even so it was a huge curve ball I hadn’t expected and my children were really upset. We were all dazed, but picked the positives out – I was cancer free!
I steadily got back to my normal self and had a return date for work that was fast approaching when on May 8th 2018 I had a routine appointment and blood test. Professor Lodge called me with the results – my tumour markers had increased. He could only put it down to me having autoimmune conditions, including autoimmune hepatitis, and mine was an extremely unlucky case that turned into cancer. My lupus had been maintained by a drug also used for autoimmune hepatitis so my symptoms could have been masked. He ordered a scan and told me not to panic.
The results confirmed the cancer was back. I had another liver resection which was slightly easier because they opened up the old scar and the recovery was a bit quicker. Life was good again for quite some time, we started going back on holiday, spreading our wings a little more and enjoying my grandson until covid hit and I had to isolate.
During this time, in February 2021, I had another blood test and the results showed once again my tumour markers had increased. The cancer was back for a third time. Professor Lodge said my liver was already a bit of a weird and wonderful shape because of the two resections, but they could try another. They would have to regenerate some more liver first which wasn’t straightforward and couldn’t say it wouldn’t happen again, so he suggested a transplant would be the best option and passed my care over to Dr Jones at St James hospital in Leeds. On the 18th May 2021 I had my transplant assessment and was placed on the liver transplant list mid-June 2021. I have been on it ever since.
I got a call during the Queen’s Jubilee Weekend, but the liver went to somebody else. Then at the end of July 2023 I got another call at 5am. I went through all sorts of tests but didn’t find out till about 2.30pm that I wasn’t getting that liver either.
During this time Living Donors were explored and my younger brother Andrew met the criteria and began a long journey himself from around the end of October 2021 including tests, scans and a liver biopsy. After about 12 months he was accepted and when we both had an outpatients’ blood test prior to the surgery the results showed he could no longer help because my antibodies had gone rogue. This meant there was a high risk of rejection. I was only taking a part of his liver and if anything went wrong, there would have very little to work with, so I needed a whole one. That was another slap in the face. My poor brother had gone through months of getting himself fit and had needed a liver biopsy. He was deflated when he couldn’t help me.
The doctors say the transplant list is reviewed regularly and they’re making sure all the other options are available, but I’ve now been waiting two-and-a-half years. When I speak to post-transplant patients in clinic I find I’ve been waiting an exceptionally long time. Two who had liver cancer only waited approximately six months, but they were a lot more poorly than I am, plus the fact I can be bridged with treatment.
I tolerated radiotherapy quite well and it reduced both my tumours, but I had such a huge dose that my liver became inflamed and I needed a high dose of steroids
While on the transplant list I’ve had treatment involving TACE (which blocks off the tumour’s blood supply along with a high dose of chemo directly to the tumour) and radiotherapy. My first TACE procedure was mid-June 2021, the second in July 2022. It’s a hospital stay of four to five days and made me feel sick, put me off food and was quite painful initially as well. I started radiotherapy on my birthday – January 18th, 2023. It was every other day and I tolerated it quite well – it reduced both my tumours. However, I can’t have any more due to me having such a huge dose that my liver became inflamed and I needed a high dose of steroids. Now I’d have to go back to the TACE if further bridging was required.
I don’t want to sound greedy, but it feels like our lives are on hold – we can’t have a break or be too far from home. During lockdown most people were in the same boat, then everything started to open up again and we’ve been left behind.
The hospital had asked if I want counselling but I’ve declined as feel talking isn’t going to achieve or change anything. I’ve just got to deal with the hand I’ve been dealt.
Some days I feel normal, others I feel unwell and am absolutely shattered. I can’t work because you can’t dip in and out of a job. When I’m okay I’ll potter at home doing light household chores, watching TV, reading, going for a walk, seeing friends on a good day but I do tire easily and sleep is really important.
It’s been and continues to be a massive rollercoaster of emotions and it’s really difficult for my family. They think surely something should have come up by now and that I’m keeping things from them. When I last got called in for transplant, then had to tell my son it wasn’t happening, he said: “I don’t know whether to punch the air because you’re not having that major operation – or cry because you desperately need it.”
My husband is my rock and an absolute superstar, he thinks surely they should operate on me now while I’m fit and healthy rather than in desperate need. If you have more than one tumor which is my case then they can’t go beyond 3cm otherwise you’re not eligible for transplant, so every time I have a blood test or scan it’s a nightmare waiting for the results.
Overall I’ve remained focused and relatively well. One of the things that keeps me going is that I’m a strong, positive person. Even on my bad days I make sure I do something. I get out of bed even when I’m not feeling well and generally try to remain positive that my turn is coming and there are better days ahead.
Every now and then I have a little wobble and pity party but then pull up my pants and continue to put one foot in front of the other and get on with has become the ‘normal’ for us. Hopefully… hopefully… my turn will come and we can eventually draw a line under the past few years.