Alex’s story: “Stay positive – worrying has never solved anything.”

Alex shares his liver cancer and transplant story. 

Get support from transplant support groups.

I was 66 years old and had retired the year before as a Chartered Engineer. I enjoyed life but my general health wasn’t great. I was overweight and a smoker I had COPD, high blood pressure and type 2 diabetes. (The joys of good living). Despite this, I’d never been really ill before and didn’t drink a lot.

So to begin - In 2008 it was discovered I had hepatitis C which also led to mild cirrhosis. I was having annual liver checkups to keep an eye on things. It was at one of these checkups that my local gastroenterologist  discovered a 6cm tumour on my liver. In fact, the tumour hadn’t given me any symptoms – if it wasn’t for the check-up, I wouldn’t have known it was there.

Diagnosis

I was sent to Nottingham University Hospitals Queens Medical Centre to see the Hepatology specialists. The professor in charge took on my case and organized test and scans to asses my condition fully. The results from the test confirmed I had a 6cm x 5cm tumour on the right lobe of my liver.

The doctor politely explained that yes I did have liver cancer but not to get to upset as they would do all they could to help me.

It was a very strange, almost out of body, experience hearing those comments. I does take a bit of time to really sink in. For me I had an hour's train journey home which was quite surreal. Getting home and explaining to the family is also a difficult situation as you need to make sure they don’t all get into a panic about it all. The reassurances from the QMC team left me feeling very positive and I tried to pass that over to the family.

Following various tests including measuring internal pressures in the liver to asses if a resection would suffice, it was decided that they would forward my case to Cambridge University Hospital liver unit at Addenbrooke's. I was then added to the Nottingham Joint Liver Transplant Clinic list for continued assessment.

The initial diagnosis from the clinic was that the tumour was currently borderline to the assessment criteria NHS Liver Transplant policy. The decision was to undergo a course of chemotherapy called transarterial-chemoembolisation (TACE).

An appointment was made with the Interventional Radiology deptartment to carry out the procedure, which I found really unpleasant. Six weeks later, a checkup was arranged and they decided more chemotherapy was needed which was carried out there and then. At the follow up six weeks after that I was told that the treatment was working and the tumour was shrinking.

At the joint transplant clinic at QMC the Addenbrookes doctors decided that I could be assessed for a transplant and until then the medical team would continued to monitor my progress.

Transplant

Six months after the initial decision to go for a transplant, I attended Addenbrooke's for the pre-transplant test which took two days to complete. The results were phoned through to me at the end of the week to tell me I was accepted onto the waiting list. This was the day after Boxing Day – what a present to get.

Thus starts a whole new way of life. Up to this point, apart from the TACE, I never thought about my mortality. Suddenly all sorts of thoughts and question abound.

The new routine meant always to have a means of communication on you as the call can come any time and after being added to the list. (As I live in the middle of the countryside, that was a bit of a concern as if away from the house phone mobile signals were sporadic). Luckily it wasn’t an issue as, only six weeks later, I was called in for the operation. The call came at 5pm and I had a two hour journey to get there.

Addenbrooke's arranged a local taxi company to take me and on arrival I was taken to the transplant ward. Final assessment of me was done and a cannula put in – ready to go - feeling remarkably calm. One of the surgeons arrived. Unfortunately, this time it was a false alarm – the donor liver was worse than the one I already had!

A few weeks later the next call came whilst the ‘Beast from the East’ (2018) was causing a lot of bad weather. I was called by the transplant team again at 2am. My partner doesn’t drive and the team at Addenbrooke's couldn’t find a taxi willing to drive me to Cambridge in those conditions. I was starting to get worried when a paramedic turned up to take me. We sped down the A1 with the blue lights flashing. It very surreal experience as being physically well and traveling very fast with blue lights on is not a common experience (one for the bucket list). Frustratingly, this time the operation was cancelled again.

A month later I was called in for the third time. This time the transplant went ahead. After the op I was in intensive care for three or four days with pneumonia and many other weird and wonderful things going wrong with my body. I was in hospital for a couple of months.

Recovery

Despite this, the first six months after my transplant were fine. Then I started to get really itchy and jaundiced. Doctors realized there was a problem with my new liver’s bile ducts, so now I have to take bile thinning medication every day, along with my immunosuppressants. I also have an artificial bile duct tube going into my body.

Another transplant would be too risky for me due to my age and overall health. But I’d recommend it to anyone who needs it. I’m very grateful I was able to have it.

I’d advise anyone in my situation to get support from transplant support groups, whether that’s face to face or online. I’ve found those really helpful.

To finish I have found all the support groups and NHS liver team all do everything they can to help you get to grips with whatever your facing.

Worrying has never solved anything – stay positive – there is always someone in a worse condition than you and our NHS is the best in the world.

My thanks to the donor's family, please register on the organ donor list.

Good luck to you all.

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