patients Stories

Nicola's Story

March 2014, I was on ‘cloud nine’. I had been married just over a year. We had just brought our first home and I was expecting our first baby any day.

15th March, 2014 the happiest day of my and my husband’s life. After a very tough 62 hour labour which resulted in an emergency Caesarean section we had a healthy 7lb 13oz baby boy. We could not wait to get home and start the next happy chapter of our lives.

Recovery from my Caesarean hit me hard. Pains in my upper right abdomen, initially diagnosed as trapped wind linked to my C section and then as just muscular discomfort, got progressively worse. I remember being sat in my living room crying in pain feeling so scared about what was happening to me. NHS 111 sent an ambulance and I was taken back to the maternity ward with a major infection. I am so happy they allowed me to go back to this ward as it is unusual after being discharged but meant my ‘little man’ could be with me.

After blood tests, x rays and ultra sounds they diagnosed pneumonia. I was very surprised as I had no cough or phlegm. I was given strong IV antibiotics and eleven days later, once my temperature was down, I was allowed to go home. I was so happy to be getting back to family life and our lovely little home. I didn’t fully admit to everyone that frankly I still felt very poorly.

At home, instead of feeling better following the hospital stay, I actually felt worse. I had no energy, still had pain but it now seemed more central in my abdomen than right sided. I struggled to even hold and tend to my own baby son. I cannot explain how heart breaking that feeling is. Each evening I would experience flu like symptoms burning hot and cold. One night I went to the out-of-hours doctors’ surgery. The doctor just prescribed me an inhaler and advised me it was all part of getting over pneumonia but I knew something else was not right.

It was a few weeks later, on a routine six-week check-up for my son, that a simple blood test led to me returning to A&E as the infection levels in my blood were very high. I was admitted onto the investigations ward, but this time without my son who had to stay with his Daddy, due to the threat of infection.  Results of an ECG showed an abnormality with my heart and it was suggested that I may have had a heart attack or an infection in the heart wall called cardio myopathy. They started me on broad spectrum antibiotic. I was strapped up to a heart rate monitor 24/7 and they ordered an MRI scan.

The results of the MRI came back clear for the heart, but it had picked up ‘lesions’ on my liver; possible abscesses which were causing the high infection levels in my blood. They ordered a biopsy of these lesions. This did not worry me at the time as I am a very positive person by nature and I didn’t think anything bad at that point. My Mum later told me she unfortunately feared the worse when lesions and biopsies were mentioned. The results of the biopsy took about 5 days to come back. I was still in hospital during this time as my infection levels, although responding the IV antibiotics, were still too high and I was still running a temperature.

During all of this time I was without my beautiful new born baby boy who was just 8 weeks old when I went into hospital for the second time. He was not allowed in with me because the risk of him getting an infection was too high and I was too poorly. I knew it was the right decision but this is something I don’t think I will ever get over. Ask any new Mum how they would feel being away from their new born when they are that little and they will relate to how I felt. I was heart-broken. It should have been the happiest time of our lives and it wasn’t. I kept telling myself I needed to get better but I just missed him so much. I saw him every day as the lovely nurses provided a private room for us, but it wasn’t the same. I wanted the simple normal things most new Mums experience. ‘Why is he crying? Why won’t he sleep? Is he hungry? Does he need a nappy change? He was well looked after. Mark, my wonderful husband, became Daddy and Mummy for a few weeks and he was blooming amazing at it.

Once my biopsy results were back the liver specialist came to see me to explain my diagnosis. I was told it was HEHE (the H just stands for Hepatic or liver) but the doctor couldn’t pronounce Epithelioid Haemangioendothelioma (EHE). Funnily enough I now know the pronunciation perfectly! He advised me the lesions were actually tumours but that they were not yet cancerous but could turn that way. They thought it may have had something to do with hormones during pregnancy but they could not be sure.

I was devastated, terrified and totally confused by the news. The room actually started spinning. I was completely on my own as it was not yet visiting hours. I just cried, I felt so totally alone. I rang my family and they came straight in but I struggled to relay the diagnosis and what it meant as to be honest I was completely bamboozled myself! Tumours that were not yet cancerous but could turn that way?! They advised me they would order a chest CT scan and would discuss my case with the multi-disciplinary team. Once discharged I would be called in too see a liver specialist to discuss possible treatment and a plan moving forward.

I attended that subsequent appointment with my husband. I was nervous but thought it would be to just discuss treatment options. I didn’t realise what was about to happen. We both walked into the room and where asked to take a seat. The doctor proceeded to ask me what I understood about my diagnosis so I explained what I had previously been told about it being tumours but not yet cancerous. He then shattered our world by telling me it was cancer and it had spread to my lungs and was therefore extremely aggressive and my only option was a liver transplant. I went numb. I cried a lot. I couldn’t take it in. “Things like this don’t happen to me, it can’t be true”. I just kept thinking “why me? Why now?”

Without even time to think I was taken straight into a room to have my blood taken and to start the assessment process for transplant. I was then assigned to a transplant nurse who I was told would look after me throughout the process.

We went home to try and digest this news. I was devastated; we were all devastated. I told all my friends and they were so upset. This made me feel terrible; I hated everyone being so sad.  I had to attend the hospital for various tests and procedures (in preparation for the transplant) and was given an appointment for July 4th to go to Kings College hospital in London for a transplant assessment.  This was 2 months away, and I was determined to try and enjoy some time with my baby boy. I had been taken away from him for too long and I wasn’t going to waste any more precious time. Mark’s work was amazing and gave him some time off to spend with us and help me to adjust. We went on a lovely family break and just tried to do normal family things, whilst trying to get our heads around the news we had just been given.

4th July came and my Dad and I travelled to London for the 5 day stay. I had to leave my ‘little man’ at home with Mark as there were no facilities to have him with me, and again the infection risk was too high with it being a transplant ward. Once again I had to be away from my baby boy due to this stupid cancer. I was upset and angry but I knew it just had to be done.

The surgeon and his team came to see me about 4 days into my hospital stay to advise me that I did not meet the transplant criteria. They were worried that the anti-rejection drugs I would be on post-transplant could cause the nodules to grow and my five-year survival rate (that they look at when considering transplant) would be affected. They felt it wasn’t the right option for me. I felt like I had been punched in the stomach all over again! The doctor back in Bristol had said transplant was my only option and now I was told I wasn’t eligible. Once again the room began to spin. All I could think was “they are giving up on me, what am I going to do?”  I didn’t think I could feel any more alone than I already did.

Then I found my saving grace…….. the EHE Facebook group. I posted my story for advice. The members flooded me with messaged of support and reassurance; finally I felt I wasn’t so alone. There were others out there with EHE. We were spread far and wide but they were there and they were all lovely and understood. One of the members told me about Professor Judson, Head of the Sarcoma Unit at the Royal Marsden Hospital, who knew about EHE. The transplant surgeon agreed to refer me to see him and advised me that if I got treatment to shrink my lung nodules then they would reconsider the liver transplant. The surgeon had a lack of EHE knowledge and expertise and I was desperate to see a doctor that knew about the condition. Before I left the hospital the surgeon ordered a further CT scan so he could compare this to the one I had when diagnosed. This scan showed no change in the tumours from May to July. This was a huge relief as from the Facebook group I had learnt that EHE can be aggressive or it can be slow growing or indolent (passive). I was obviously praying that mine was the latter.

I received the referral to see Professor Judson at the start of August. I was extraordinarily nervous going to this appointment, not knowing what to expect. During the appointment with the Professor we discussed treatment options. He explained that with EHE it’s unfortunately a bit of trial and error with drugs and chemo as so little is known about this cancer. He was very reluctant to do chemo and to make me poorly when I was otherwise fit and well. He also wanted another scan before we did anything in order to see how the cancer was behaving as he wanted to make doubly sure there was no change to the previous scans.

That scan showed the cancer was stable so Professor Judson advocated a ‘watch and wait’ approach, keeping all treatments ‘in reserve’. He was reluctant to risk making me poorly through chemo as I was otherwise fit and well and should be enjoying my young baby.  He explained he had no idea why but that for some reason my body currently had the EHE under control. He ordered a further CT scan 6 months later. I left the appointment on a high, feeling reassured and confident that at this stage my cancer was not growing and I was under the care of a doctor who had not only seen this cancer before but had a good knowledge of it.

I must admit this high was sort lived. I did feel huge relief but after the September scan and appointment the reality hit me like a truck. Whilst in hospital and going through different appointments I knew I had to get through it, but once it had all died down it suddenly hit me. I couldn’t find any peace. My mind was racing all day, every day and at night it was so much worse. I hated the feeling and fear of the uncertainty. The Facebook group, although fantastic support, also contained stories of people whose EHE is aggressive, and so in turn showed you the very dark side of this unpredictable cancer.

I was struggling to adjust to not only becoming a new Mum but also dealing with a terrifying rare cancer diagnosis at the same time. I threw myself into my ‘little man’ and being the best Mummy I could be to him. Other than that I felt I was a shadow of my former self. I had no interest or pleasure in doing things where as I was always such a sociable person. I felt I didn’t know who I was anymore. I had cancer! Not only did I have cancer it was an extremely rare cancer. It changed my entire outlook and perspective and nothing felt the same anymore. It was a very tough time. I decided I needed to seek some professional support with this through the Penny Brohn cancer care and I am so glad I did. It helped hugely.

I returned for a CT scan at the start of March 2015.  The results of this scan showed stability too. This time I saw Dr Jones, a colleague of the Professor, and a very personable man with a lot of EHE knowledge.  He reassured me that ‘watch and wait’ was the right thing for me at this time. I am naturally always worried about doing nothing and I don’t think I will ever be completely comfortable with it, but we agreed to have another scan at the beginning of September.

Dr Jones told me that from his time in the States he personally knew the research doctor in the USA, Dr Rubin, who I had learnt is the only doctor researching EHE and its behaviour. We also talked a lot about how the Facebook patients wanted to raise the profile and awareness of EHE and raise vital funds for Dr Rubin’s research. He wanted to help in any way he could.

So March was my last appointment…. since then I have been determined to move forward and not let EHE consume me. I think I am doing so much better and so glad I did seek some support. I still get bad days. And one thing is for sure – not a day goes by when it’s not on my mind but I am learning to try and make EHE part of my life. On the EHE Facebook page we have a name for the period of time leading up to a scan, we call it ‘Scanxiety’. It’s a real thing and we all suffer with it. My next one is approaching and I am already starting to feel the nerves. I feel that I live my from scan to scan.

But the fear and adversity also make you treasure what you have. One things for sure, I am truly blessed to have my beautiful baby boy who is happy, healthy and could bring a smile to anyone’s face and my loving family and friends who have been nothing short of fabulous, showing me the true meaning of unconditional love.

The EHE Rare Cancer Charity (UK) is now live and I have found fundraising a good focus for me as I like to feel in control of things. I cannot control this cancer, which I am learning to accept (‘ish). But I can fundraise and hopefully achieve a collective goal of providing funds to Dr Rubin, and that I can control!!

Dr Rubin is so close to a breakthrough and I want to be part of ensuring I see the day that he does. One of the EHE logos bares the slogan ‘Just live’. That is certainly what I intend to do.