Over the course of the last few weeks I’ve been adapting to life at home after major surgery, as well as preparing for the next stage of my particular path.
When you are initially released from hospital a follow up appointment is made for you to return and see your team a couple of weeks later, to hear the pathology results and generally see how you’re feeling. Usually this would be an anxious time for a patient but in my case Mr Rasheed had already given me the good news that my operation had been a successs.
Although I saw him briefly, this clinic meeting was with Nik his registrar, who is also one of life’s good people and a really lovely person. Whilst I still felt pretty weak, I was adapting to life as they expected and there was no reason for concern. However I told him I was experiencing a little bit of discomfort in my pelvic area and I seemed to be have developed a slight discharge that needed to be investigated. I think this is a fairly common occurrence after this type of surgery but it needed to be cleared up so I had a blood test on my way out, and an MRI was ordered to take place within the next few days. An appointment was made for me to see the team in 2 weeks time, where we could discuss the findings and my ongoing care.
A couple of weeks later I was back in clinic seeing Nik again. He told me that I did indeed have a collection of fluid sitting in my pelvic area. He reassured me that this could happen sometimes and was probably the result of a “communication issue”. We had a couple of choices. Either I could be admitted for a guided CT procedure where the fluid is drained off or we could watch and wait to see if the issue resolved itself. Our decision would partly be based on what happened next.
As far as I was concerned I was going to be referred onto another surgeon called Mr Khan, also based at the Marsden. He is the man who will perform my next operation. This operation will be preventative rather than curative. The duodenal polyps that I have, as a result of my FAP diagnosis, need to come out. Whilst not being cancerous yet, there is a strong possibility they will turn malignant. Sometimes these polyps can be removed during an endoscopy but in my case that’s not possible because they are too big and there’s too many of them.
However Nik threw a curve ball at me. It turned out that at their Multi disciplinary team meeting (MDT), it was decided that I would first be referred back to my oncologist at West Midd/Charing Cross Hospitals for more chemotherapy. Although this can often happen, it hadn’t really ever seemed to be on the agenda for me. Whilst understanding the rationale, a kind of belts and braces approach, I was gutted. To me it just seemed to add yet more time to an already long hiatus from ordinary life. Rationally I understood it wasn’t a step backwards, emotionally it felt like it was.
If we were to go ahead with more chemotherapy then this fluid needed to be dealt with imminently. However we agreed that he would review my MRI images with a radiologist. Nik would write to both Mr Khan and my oncologist and I would no doubt see each of them in the coming weeks. I realised chemotherapy wasn’t necessarily a forgone conclusion. My oncologist might not agree. I had already gone through 10 cycles and I’d learnt through speaking to her and her colleagues that sometimes it was felt that could be quite enough.
Early, the next week I spoke to one of my amazing Cancer nurse specialists (CNS). I’m lucky to have 4 of them at different hospitals and they are all fantastic. We discussed my feelings and she encouraged me to contact my oncologist, Dr Ahmad, to see what she thought. I felt a little anxious about stepping on anyone’s toes, I’ve been told not to worry in future, and my nurse probably sensing that, instead contacted her for me. It turned out that my suspicions were right and Dr Ahmad didn’t feel that I needed any more treatment. However she booked me in to see and discuss the matter with her a couple of weeks later.
In the meantime Nik called to tell me that they were going to hold off on the CT procedure as the fluid was shrinking itself. I told him that I didn’t think I was going to be given more chemotherapy. He was happy with this. You soon learn when you go through a cancer diagnosis that everyone has their different areas of expertise and they don’t necessarily always agree. However the surgeons obviously understand that oncologist’s know more than them when it comes to treatments and in my experience defer to them if needed. We agreed we would reconvene in a few weeks time.
A couple of weeks later I was back at the Marsden to meet Mr Khan for the first time. Although I didn’t meet him for long I get the impression he’s a slightly different kind of character to Mr Rasheed. He’s certainly not quite as engaging, but I hear he’s an amazing surgeon and I suppose at the end of the day that’s the main thing. After an initial few minutes with him, where he established a few details he left to be replaced by his registrar Tim and CNS Tatjana.
They both seemed really nice and infact I’d been seen by Tim whilst he was covering Mr Rasheed’s team over both bank holidays, when I was still an inpatient. In this meeting he went over their plans for me. Initially I was to have a CT scan where my duodenal polyps would be re staged ( in FAP terms not cancer) and then once everything was confirmed we could move ahead with surgery plans. He told me they were looking at a date of sometime in August. When I explained I had a holiday booked, he was very accomodating and reassured me that because my polyps were not malignant they could work around me so we proposed a date towards the end of September instead.
He told me that the operation would most likely be the whipple’s and that Tatjana would go through things in more detail. My friend and I were then left with my new nurse. She explained a little more about what the surgery would involve and answered the questions we had that arose from this. We learned that the Whipple’s is principally used in operable pancreatic cancer. During the operation the surgeon will remove the head of the pancreas. He will also remove the lower end of the stomach, the duodenum, the gall bladder, part of the bile duct and surrounding Lymph nodes.
However, she also told me there is a possibility that I could have a similar operation instead, which would be the pylorus preserving pancreaticoduodenectomy (PPD). In this operation none of the stomach is removed. The stomach valve (the pylorus) which controls the flow of food into the duodenum, is not removed either. The tail of the pancreas is joined to the small intestines or stomach. Regardless of which operation I have, it’s likely that my digestion will be affected and that I will probably need pancreatic enzyme supplements to help digest my food. There is also a risk of diabetes.
I had heard that this operation could last up to 10 hours but she reassured me that Mr Khan performs them in 4 to 5 hours which is obviously still a long time but it was a great relief to learn it wasn’t as long as I’d expected it to be. I asked how long I would likely to be in hospital for and she told me it would be 10 to 14 days with a couple of nights in intensive care again.
This was all obviously quite a lot to take in. However the way I’ve tried to deal with this whole process is bit by bit. For instance, I would prefer not to become diabetic, but if I do then I will deal with it, if and when it happens. There’s no point worrying about something that I can’t control and certainly not before I even know the date of my operation. I took her card and she told me they would be in touch with the date of the CT scan.
The next day I popped in for a catch up appointment with my GP. Whilst discussing my ongoing care, she mentioned that she thought I looked pretty pale again. Was I anaemic ? To be honest it was really difficult to answer because I was feeling very fatigued but I had put this down to general tiredness after my operation. She knew I was seeing my oncologist a couple of days later so she suggested phoning the surgery the next week if I didn’t have a blood test at hospital. Just to double check.
My oncologist Dr Ahmad is quite a character. It’s safe to say that once you’ve met her, you won’t forget her. Think larger than life, posh, engaging, kind, and slightly chaotic and you have an idea! We’ve always got on well and I’m very fond of her because ultimately she’s very good at her job and she cares. She’s also nearly always running horrendously late in clinic! This isn’t always ideal when you are anxiously waiting for an oncology meeting but fortunately this time I already had an idea of what she was going to say.
True to form I got in to see her nearly two hours after the appointment time but any feelings of irritation I might have felt quickly evaporated as she greeted me. It was very touching because she took the time to ask me about my close friend who had passed away recently, and who she had also met. We discussed my surgery and how I felt and then she told me that she did not see that there was any point in me having any more chemotherapy because I had had so many sessions up front. “The Marsden always recommend this” she told me “but there’s no evidence to show that it works”
We went on to discuss the staging of my tumour when it was removed, as well as my original diagnosis which seemed to back up her decision. However, she wanted to review my scans in more detail so we arranged to meet again in early August. She seemed pretty certain there would be no treatment so I was very happy. At the end of our meeting, I mentioned my GP’s observation to her and she agreed that I looked very pale and so I had a blood test on my way out.
At the beginning of the next week I had my CT scan back at the Marsden and the next day I received a phone call from Dr Ahmad. It turned out my GP’s suspicions were correct. I was very anaemic. My HB levels were at 7.9. The average woman should be around 11.5 and I was diagnosed at 8.1 so I was really quite low again. She reassured me that this can happen after big operations but as a result I needed a blood transfusion. Unfortunately she couldn’t get me in to have it done at my nearest hospital, West Midd but I was booked in for that weekend at Charing Cross instead.
I had my blood transfusion on the following Saturday and it was fine. I feel a bit of a pro now as it was my 3rd one, albeit if I don’t remember the last one because I had it when I was unconscious after my operation. The worst part is the boredom. I had 2 units given to me and it took most of the day. However a fellow patient friend popped over to say hello after her scan and another friend kindly joined me for the last few hours so it wasn’t too bad.
On the Tuesday I was back at the Marsden, thank god for free transport, for my follow up appointment with Mr Khan regarding my CT scan. This time it lasted only a matter of minutes and was with Tim again. He told me that the staging of my polyps was as they expected, my bowel looked fine, but that an adenoma, which is a type of a benign polyp, that I have in my liver, had grown by 1cm since it was last scanned earlier in the year. He told me that whilst they weren’t particularly concerned about this, they might decide to now take the adenoma out in my operation too. They were going to have to discuss this at their next MDT and to help establish what to do, they needed me to have another scan. This time an MRI on my liver. “Now go” he told me, “you spend far too much time at hospital as it is!”
I had my MRI on the Monday of the following week but I’m yet to discover if they have decided to remove the adenoma as well. Tatjana was away on holiday for a couple of weeks after my scan and although she’s back now and chasing up the team’s decision for me, she’s really busy. Hopefully I’ll hear soon, but at least I know there’s nothing really to worry about. She’s reassured me that the scan showed that the adenoma is benign and I’m sure I’ll find out when I meet the team again.
Later that week I had an appointment at Chelsea and Westminster Hospital. This time about my thyroid. Right back at the beginning, when I was originally diagnosed, Dr Ahmad asked if I wanted to become part of a trial. Basically, the trial involved me having a whole body MRI scan up at UCL hospital. Following that, for the next year I would be sent questionnaires every 4 months to complete and send back. Whilst not officially being on my file, she suggested that it might be a good idea because it would give us even more information on my body. Initially I was pretty reticent. I’d hated my first ever MRI because I had felt so claustrophobic. However both she and my friend persuaded me it that it would be worth it.
As a result of having this scan, a nodule on my thyroid had shown up. Unbeknown to me, cancer of the thyroid can also affect people with the FAP gene. So once the scan results came through in late April of 2016, Dr Ahmad sent me for an FNA, otherwise known as a fine needle assesment, and ultrasound. These results came back around the same time that I was due to see her again in a follow up clinic following the end of my chemo radiotherapy trearment. When I initially saw her, the doctor who had completed the pathology report told her he thought it indicated secondary bowel cancer.
This was obviously quite a shock, especially since there was no change on the scans of either my liver or lungs, which are the more usual places for bowel cancer to spread to. She asked me if I would be willing to have a second biopsy and referred me on to see a specialist at Chelsea and Westminster hospital. I had the second biopsy at West Midd in June of last year and met my new specialist for the first time a few weeks later. Just before I met him the second biopsy results came back. Now they said it was primary thyroid cancer.
I met Mr Smellie, yes I know, brilliant name!, in late June of last year. He’s another character. He reassured me that if anything this was primary cancer, so not great, but in the great scheme of things, better than having it spread from the site of origin. However, there was still great debate over the pathology results and they had been sent on to another hospital for closer reviews. He told me that the best thing would be to eventually remove the whole thyroid but that my bowel tumour was the primary concern. If the thyroid did turn out to be cancer, he told me, it would grow very slowly.
Eventually late that summer, the nodule was confirmed to be a non cancerous nodule that would probably still have to come out. But we postponed any follow further up appointments until after my bowel operation. So when I returned to the hospital a few weeks ago, it was my first visit for nearly a year.
Initially, this time around, I did not see Mr Smellie. However, my case is so complicated that eventually he had to join the poor junior doctor and I for the meeting anyway. “So you’ve had your operation?!” he exclaimed “well this changes my decision because last time I spoke to them”, “them” being the West Midd surgeons, “they didn’t think they were going to be able to get your tumour out!” Even though I’ve always been aware of his opinion, his bluntness still took my breath away Mind you in some ways his honesty is also quite refreshing.
To cut a long story short I’m pretty sure he has now decided that I should carry on with the whipple’s operation and that he will perform the thyroidectomy afterwards, probably in February of next year. “How long do you think I’ll be in hospital for ?” I asked as he rushed back to see his patient, ” A week” he answered ” it’ll be like a walk in the park after what you’ve been through!” he smiled as he left the room.
My week of hospital appointments wasn’t quite over just yet. At the end of the week I was back seeing Nik at the Marsden again. It’s always good to see a friendly face and after we had caught up on my news, It turns out that he knows Mr Smellie, we discussed what we would do next. We agreed that he should organise a follow up MRI on my pelvis to make sure it was healing, and that I should also have a follow up blood test before I saw him back in clinic again a couple of weeks later.
I suppose this blog gives a little bit of an insight into what’s been going on for me over the past few months. The other day I worked out that I’d had 14 hospital appointments since my operation. Later this week, I have both my MRI scan and follow up clinic. Next week I’m due to see Dr Ahmad, the dietitian and my stoma nurse. The week after that I’m back to see Mr Smellie again. However after that I’m checking out for a couple of weeks. Sometimes I feel like I’m on a bit of a rollercoaster. Never quite knowing what’s around the corner. So I think it will be do me the world of good to get away. Switch off from it all for a while. Energised and ready for whatever comes my way next.