It feels like an almost impossible task to write about my time at the Royal Marsden in early spring time of this year. That’s because in part it was one of the most challenging times of my life, but it was also one of the most life affirming.
I was admitted into hospital on Thursday 30th March. The day before my surgery. Once I had checked in, it all began to feel scarily real. I met my specialist nurse Philippe for the first time. He went over what to expect in the coming days. I then met my stoma nurse Jackie, who drew stoma dots with marker pen on my body for Mr Rasheed to use as guides when he came to operate. Finally, I met up with my CNS nurse, Katy, who took me down to my ward. Whilst the bed was prepared, my friend and I sat outside the ward, idling away time. We met up with Mr Rasheed and his team and I signed all the papers explaining that I understood all the risks ahead of me. ” See you in the morning bright and early” he said, “have your shower and be ready for 8am as it’s a long operation and we want to get going as soon as possible” “Ok” I said and big hugs were given all round.
The other reason for getting me in the night before was because I had to go through some bowel preparation. For anyone who has had not had the pleasure of going through a colonoscopy think minimal light food, laxatives and emptying your bowels frequently!! As one friend departed, another appeared, and she stayed with me until it was time for bed which was much appreciated.
In the morning, I was up, showered and gowned ready for 8am. Shortly after that I was taken down to theatre. I actually felt strangely calm on that morning after a decent night’s sleep. I was nervous but I also knew I was in good hands. The last thing I remember is being given the anaesthetic. The anaesthetist, Mr Oliver, is a bit of a character. He sat me up, due to an epidural that would be put into my back after I was unconscious and told me he thought it was time for my rather large gin and tonic!! And that was that.
The next thing I remember is waking up a couple of days later in the Critical care unit (CCU). This is standard practise after any major operation and I was due to be there for as long as they thought necessary. I found out a few days later, when I was a little more aware, that the operation had gone well. However it had been a little longer than anticipated because they had decided to take the large gastric polyp out of my stomach as well as everything else. I think the operation had lasted for about 17 hours.
Mr Oliver had told me in my pre assessment that I would be sedated for at least the night following my operation, because there would obviously be no point in waking me up too soon after such a long operation and at night. However I believe that after the operation, Mr Rasheed told my sister and best friend that it could be for a few more days depending on how I responded. I can only imagine how anxious this time must have been for them.
Despite knowing I would probably be asleep, I was adamant that I wanted two of my closest friends to come in and see me the day after my operation. When they arrived on Saturday afternoon, the nurse told them that I was doing so well that they were going to bring me round. And although I have no memory whatsoever of their visit, apparently when I did wake up, the first thing I said, was ” Oh no mate, it’s not ideal! ”
On Sunday I was a little more conscious of the visit of two more close friends but I still went in and out of consciousness. Unsurprisingly much of my time up in CCU is a blur. I remember the kindness and care of the specialist nurses, the visits of the different teams involved in my surgery to see me on a daily basis, and the pain. I can’t actually remember the physical pain but I can remember being in pain and of how it was unlike anything I’d ever experienced. ” On a scale of 1 to 10 how much pain are you in?” they would ask, “11” I would answer!! So they would tell me to press my pain controlled analgesia otherwise known as my PCA.
The PCA is made up of a syringe filled with a pain relief drug such as morphine, which is fed intravenously through to you via a canula. As the patient you have a hand device which you can press at measured time gaps and it pumps out carefully controlled pain relief into your veins. There, is of course, a lockout period so you can’t overdose on it, but it took me ages to work out how long I could wait in between pressing the button. I also remember being staggered that the physiotherapist came to see me so early after my operation. She came on the Monday, and I’m sure a few swear words were muttered under my breath as she helped me walk round the bed!!
Although I wasn’t really conscious of it at the time, I was also nil by mouth, except for a few swabs of water on sponge sticks every so often. I remember dying for more water each time I was given some. The reason for being nil by mouth is that the bowel and gut take time to start working again after such a huge operation. The doctors need to monitor you closely to see when it’s safe to begin eating again.
Much of my time up there was on my own and spent sleeping, but I also had joyful times with my sister and her husband and with some of my good friends. On the 7th day I was well enough to be transferred to Ellis ward where I would stay for the rest of my time in hospital. Although there would be some very tough times on this ward, it’s a place that will be close to my heart forever.
I think much of the reason that this ward is so close to patients and nurses hearts is the whole environment of the place. It was shut down and given a proper makeover a few years ago. This was paid for by the family of a former patient who sadly passed away, but who had spent much time there, and who wanted to give something back. It feels warm and safe as a result. However for me it was also the kindness, love, respect and care I received from all the staff there. They see you at your weakest, but are always there to help pick up the pieces, to make you smile and give you a shoulder to cry on. I also made countless new friends. There is something about being on a ward with patients who have a diagnosis of cancer. You all have your own stories but you find strength, love, laughter and friendship even in the darkest of times.
When I reflect back on my first couple of days on the ward I realise they too are quite vague. I gradually began to become aware of my two new stomas. I also had various tubes and drains coming out of me. One of them was what is called a nasogastric tube, otherwise known as an NG tube, sitting in my nose. Although it sits in the nose, it goes down through the throat to sit in the stomach draining excess fluid. It sits there for as long as the doctors feel is necessary. In my case it sat there for just over two weeks as my gut and bowel took quite a while to wake up, which in retrospect isn’t a surprise seeing as I had, had so much taken away. To begin with, I had no idea what the tube was. Indeed, such was my confusion that I even tried to pull it off one night before my nurse explained what it was.
I could not lie on my back for the whole of my time in hospital, this was because they had carried out a myocutaneous flap reconstruction in the operation. Essentially this means they created a new pelvic floor for me, with the aid of muscle and skin from my buttocks. Post surgery it would be about 10 weeks until I could lie on my back again. The nurses would change me from side to side at regular intervals during my time in hospital.
A big physical challenge whilst on the ward was my first shower. I found it exhausting, but my nurse was amazing and she also changed my stoma bags with me for the first time. So, in this way, I was gently put on the path to recovery. As time went on the nurses subtly gave me more autonomy. Together with help from them and my stoma nurses I learnt to empty and change my bags myself, and I began to be able to shower on my own. I continued my work with the physiotherapists and spoke to different teams about any issues that came up. My team continued to monitor me and on the Wednesday before Easter I was finally allowed to try to start taking on clear fluids.
Although I had not physically eaten for nearly two weeks, I was being fed intravenously by a method called TPN. However the thought of proper food was exciting. The NG tube came out and I was able to consume clear soups, jelly and ice creams before being moved onwards to soups such as tomato soup and tea with milk. Anyone who knows me well will realise how excited I was by the tea! On Good Friday the doctor on shift decided I could move onto more substantial foods. I thought this was great news. I managed a bite of some chicken, a little mashed potato and some ice cream for dinner. I felt a little full after eating but generally felt fine.
However late that night my stomach decided it wasn’t quite ready for me to eat properly just yet. At regular intervals and well into late morning on Saturday, I continued to be sick. And when I say that, I mean I threw up a lot. As another patient put it, who else outside the medical world knew that you can throw up bile for days without eating? I was learning the lesson the hard way. This of course had to be dealt with swiftly. The nurses waited it out for as long as possible, instructing me to only take sips of water every so often whilst we went back to square one again. Unfortunately, ultimately this also meant the NG tube had to be put back in, but this time whilst I was conscious. All I can say is that sounds came out of my body that I didn’t know existed!! It was not a fun time, and physically and mentally I was at a very low ebb.
However, despite finding the next few days extremely difficult, I got through them with the love and support of fantastic family and friends both on the phone and in person, and of course with the support of the nurses, who reassured me that this time would pass. They of course, had seen it all before. Perhaps it was a lesson for me. My body’s way of telling me I wasn’t ready to go home yet. Indeed, when I saw Mr Rasheed again, back from his holiday, he told me that unfortunately he wasn’t surprised to find me still in hospital.
I think it’s very common for anyone who has gone through such a major operation to go through highs and lows and I was no different. On one hand I went through waves of feelings of euphoria. I couldn’t believe I had got through the operation, and the sense of gratitude I felt towards Mr Rasheed and his team were indescribable. However I also realised how much I’d been through in the year leading up to the operation and there was grief for friends who had been less fortunate than me. All the nurses had warned me that these feelings would come and of course they were there to help pick up the pieces.
Towards the end of my time in hospital my mood dipped again. This was truly, the most difficult experience of my life. Although I was very able to walk and move from side to side in bed, I felt pretty ill physically and psychologically the challenge of learning to eat, once we started up again, was hard. Through it all, the support was amazing. Not just from family and friends, but also from my team and nursing staff. Mr Rasheed would tell me that my appetite would gradually come back and more importantly to keep on drinking so I was well hydrated. I was able to get out to a local coffee shop and even sat outside a pub one afternoon with some friends drinking orange juice and nibbling on crisps. Slowly but surely I would get there, he reassured me. “You’ll have good days and bad days, when you get home, but gradually the good days will outweigh the bad” he told me.
A few days later, I was deemed ready to be discharged. Whilst not feeling that great I was ready to face the next chapter. I’d spent the whole of April in hospital and was realeased on 1st May, the day before my birthday. On the evening before my discharge Mr Rasheed came to see me. “I was going to tell you this in clinic in a couple of weeks” he said, ” but I thought you’d like to know now. “I got it all. We got clear margins and of the 40 nodes we took, there were no traces of cancer”. That truly was the best birthday present I could ever have been given. I knew I would face more challenges and going home was in some ways only the beginning, but it also felt like we were at least finally closing a chapter.