The last time I wrote I was in a place I’ve come to know quite well over the years. Perhaps the best way to describe it would be to say that I felt like I was ”in a state of limbo”. I’d had been told I possibly had more cancer but I’d had one inconclusive liver biopsy and Mr Rasheed had requested another. We were still looking for answers.
In the meantime I was able to enjoy a few fun days which included a weekend of catching up with some old rugby friends for lunch on the Saturday and then on Sunday a day at the cricket. The 4th day of the Test match between England v India at Lords, so a proper treat. We finished the weekend off by visiting our friend who was back from France for a few days. On the Monday I had to be up early for a trip up to the Marsden for another Covid PCR test in preparation for my next liver biopsy a few days later. This all went smoothly but I must admit it was pretty tiring after a late night and I was also still hooked up to my overnight feed so that represented an extra challenge.
The next biopsy took place on the Thursday of the same week. It was repeated by the same team as last time although this time the consultant was overseeing the procedure the whole time. They were very efficient and it wasn’t too painful. I just had to wait to see what showed up under the microscope. My follow up clinic was booked in for early September which was about 3 weeks later.
The day before I was due to return to clinic I had a phone call from one of the doctors who work with Mr Rasheed. She explained that I would still be seeing him in clinic but that they needed to order another MRI and PET scan for me but he would explain more when I saw him. The call confused me somewhat. I wasn’t entirely sure of what to expect when I went to clinic. However the scans were booked in almost immediately and were all completed by the end of the following week.
When I saw Mr Rasheed again he was able to give me more definite news. Unfortunately the biopsy had confirmed that there was indeed cancer in my liver. However they could not yet narrow it down to which type of cancer it was. It could be primary liver cancer or cancer that had spread from any one of the three cancers that I’d already had. It might even be another completely new cancer called Cholangiocarcinoma, otherwise known as Bile duct cancer.
This was obviously a lot of information to take in but Mr Rasheed spoke with his usual kindness and candour. He explained that the next steps would be to discuss me again in their MDT where they would compare my previous cancers with the new tumours and that by the following week he would be able to tell me which one it was. I asked him which one he thought it was and he answered that he felt it was bowel or cholangiocarcinoma. The treatment would be chemotherapy again back with Riz my original oncologist. Although we weren’t yet sure of the type of cancer he was keen for me to see Riz as soon as possible as he thought both cancers would be targeted by the same chemotherapy drugs.
I asked him what the aim of chemotherapy would be and he told me that it would be to shrink the tumours for possible ablation because surgery wasn’t going to be possible after all I’ve been through. He was concerned that I’d struggle with chemotherapy this time around after all my body has been through plus being on TPN now too. Although it was obviously disappointing to hear all this news I left clinic feeling that at least there were finally some answers to our questions plus seeing Mr Rasheed always lifts my spirits because he is so lovely.
I was able to see Riz at West Middlesex Hospital about a week later but because we were still unsure of what type of cancer we were looking at she couldn’t confirm anything. However she was able to tell me that if it turned out to be Cholangiocarcinoma then she wouldn’t be treating me. I would go back to the oncology team at the Marsden. It was good of her to see me and she was as enigmatic as ever. The next day Mr Rasheed rang to tell me that the cancer been confirmed as cholangiocarcinoma so I told him what Riz had said and he said he would look into who I would see next for treatment.
At the beginning of summer I had been feeling relatively well but as time went on I had begun to feel worse. I couldn’t quite put my finger on what was causing it because I would wake up feeling nauseous and with headaches in the middle of the night but I didn’t seem to be dehydrated. I would also feel quite nauseous after eating sometimes. Added to that I seemed to be suffering with more and more partial blockages so felt bloated much of the time and I began struggling with abdominal pains. In short I felt pretty rough. I asked Mr Rasheed if he had any ideas on why I felt so bad and he suggested that it might be the cancer or my desmoids playing up. At any rate life wasn’t much fun and I spent a lot of time resting or trying to sleep it off. I would run extra fluids occasionally and that always helps. However my regular kidney function blood tests showed up as normal so the reasons for me feeling so ill were still confounding me.
In the meantime I tried to remain posItive and get out a little for small walks and catching up with friends if the opportunity arose. I still felt a little in limbo but I knew I was in good hands. And a couple of weeks later I was booked in to see Professor Chau in his Friday afternoon clinic. I’m really fortunate because Katy my CNS nurse who works with Mr Rasheed is brilliant and also really kind. For some reason I had rung her the day before my appointment and she mentioned that it would be possible for me to bring a friend to the clinic with me the next day. The Marsden is still understandably being very strict with their COVID policies but they can make exceptions for certain clinic appointments such as when you are meeting a new team and being offered new treatments. So in that way I was able to take my friend Sarah which was a great support both practically and emotionally.
Katy had explained how the clinic would work. So that was a great help. We first met one of the senior registrars who was actually very good and seemed to have done his homework on my previous medical history. Over the years I’ve learnt that this is always a bonus! He asked me why I thought I was there and what the aim of chemotherapy would be. He told me of their plans but he was waiting for final confirmation on the exact type of treatment they would be offering me. It turns out that oncology have their MDT meetings on Fridays beginning at lunchtime and Professor Chau needed to pop in to my clinic too.
However after a short time he was able to confirm the type they would be offering me and I also met Ajita who will be my nurse specialist. She brought a file of information on the chemotherapy regime in for me to take home and read. She seems really nice and efficient too. We then had to wait a while for the “Prof” to arrive. He seems like a real character and a positive bundle of energy. It was quite funny because he was quite excited to meet me after years of discussing me and seeing images of my insides! We went through everything again in more detail and he answered more questions.
Unfortunately but probably unsurprisingly the tumours in my liver have grown and more have appeared. Surgery is not an option and I don’t think they were considering ablation either. However hopefully the treatment can shrink them and give me some quality of life. The treatment is split into two, days 1 and 8 which counts as one cycle followed by 21 days off and then its repeated. I am due to have 8 cycles with scans halfway and at the end. More unfortunate news was to follow in that the PET scan showed up an area of concern in my right lung again where I had the cancer removed in surgery earlier in the year. So they needed to have a CT scan taken there before treatment began. I might even require yet another biopsy.
I then repeated how unwell I had been feeling lately. The registrar had said he would expect me to feel ill but I think the fact that I mentioned nausea as a symptom made them feel that they should order a scan of my brain too. This completely knocked me but as Sarah pointed out afterwards, they just need to take a belts and braces approach. We left clinic expecting my treatment to begin within the next fortnight following my scans.
My scans took place on the Wednesday of the following week but I had no news about my chemotherapy start date so in the middle of the second week I chased things up and so by the Friday I had another clinic appointment booked in. Fortunately I had already spoken to Katy who told me my brain scan was clear so that was a huge weight off my shoulders. However I wasn’t entirely sure what would happen in clinic.
As it turned out it was simply to discuss the results of the scans and to sign off on chemotherapy. I saw a different doctor from the oncology team. He told me that they know thought that I’d probably had the cholangiocarcinoma for 8 to 9 months and that it was the source of my lung cancer. It’s just that it hadn’t shown up in scans earlier in the year. Unfortunately it has reappeared in my lungs and indeed spread to other areas so the sooner treatment begins the better so we can attempt to gain some control again.
I told him of my increasing side effects. I suffer with extremely painful abdominal cramps and nausea and he told me it was the cancer. At least he was able to prescribe me some medication. He also told me that hopefully I should begin to feel a little better after a couple of cycles. So fingers crossed for that. And so it’s a question of waiting for that phone call. Chemotherapy should be this week or at the very latest next. It’s back to that strange feeling of those days of waiting for treatment. Not really wanting to have to go through it again but also hoping to get going on it so it can help your body deal with the cancer that is attacking my body.
Life is pretty tough going at the moment but we do at least have the answers to those questions and I will soon be on that road to dealing with them. One day at a time.
A complex case 