The Road to Recovery
It’s been a few days since I got the scan results. I wish I could write that my inner stoic has surfaced and that I’m taking the results on the chin. In a way, I think I am dealing with it fairly well, but it is still difficult to face. Although I did not get any bad news per se, the vibe of the meeting just left me feeling deflated. It worried me more that I was asking questions but not really getting any answers. Responses such as “I can’t answer that I’m afraid” and “It isn’t clear at this stage” aren’t necessarily a bad thing – I understand that giving an answer when you aren’t confident it is correct, or where it isn’t your responsibility to know, is not a better thing to do. A little bit of optimism or encouragement goes a long way in these meetings, though. I do not feel like I got a lot of that in the last one. Uttering “so, I don’t have any bad news for you today,” may constitute optimism in some people’s books, but in mine it constitutes the bare minimum amount of optimism you can provide as a foundation to a meeting. Maybe Dandard’s standards are just too high and I need to ground them a bit.
The event that originally charmed me about The Christie happened during the first meeting with my specialist. Up to that point, I had faced nothing but negative news, pessimistic outlooks and concerned faces. Having a medical professional utter things such as “we’ll get you back to running marathons” and talking about how I’m young, so there are many options for me, made an incredible amount of difference in my spirit. That is exactly what the oncologist did in my first meeting at The Christie. I practically skipped out of the meeting and felt so relieved that someone had painted a different picture of my diagnosis. All of a sudden, it felt like the possibility of a meaningful future still existed. That wasn’t something I’d managed to entertain until that point, since being diagnosed. Things got better from there; it was easier to feel like myself. Yet nothing had been promised to me. I wasn’t going to bang on the oncologist’s door and demand to know why he had told me that I’d be running marathons again if my tumour ended up being inoperable, or if there was a recurrence after surgery… or even if I was cured, but didn’t feel like running marathons anymore. I took it for what it was – a vote of confidence. A communication that things can return to normal, that there is a way to be cured from this disease and return to my normal life. It felt amazing, but it seems to be uncommon in the world of oncology to offer up such pleasantries.
It seems pessimistic to even need such reassurance, as if I should know that there is a cure and that it is possible in my case. The literature around pancreatic cancer does not leave you feeling particularly confident that there is such a cure, though. Nearly all success stories seem to be where the tumour could be removed quickly, and where the cancer was identified at the earliest possible stage. My cancer was diagnosed early, relative to the average diagnosis, but it wasn’t early enough to allow for surgery. Pancreatic cancer is often diagnosed at a late stage as it only starts showing symptoms later on… or at least, that is when the symptoms get significant enough that pancreatic cancer is considered, as opposed to something much more minor. In my case, I was told that I was suffering from a mild form of constipation. Turns out that diagnosis was incorrect, unfortunately for me.
Despite being diagnosed relatively early, my tumour is still locally advanced and has other complications, such as it’s m unfortunate appetite for arteries, making it difficult to remove. There’s also the unknown ‘mass’ which is apparently bewildering the oncology team; previously known as a ‘cyst’, but becoming more mysterious over time, and even getting smaller in the last progress scan – a property of cancerous cells. The ‘cyst’ label seems to be a misnomer, but I’m not a huge fan of the nondescript ‘mass’ label that has now been assigned to it. Those facts are playing on my mind as I wait for the surgeon’s verdict. If my meeting had been more encouraging, either by having more positive results or having a more hopeful delivery of the results, I may be dealing with the anticipation a little better.
That isn’t to say I am blaming the oncologist either. Through a workplace help scheme, I got 6 counselling sessions paid for which I decided to start using a few months ago. My final one was today. It actually should have been a few weeks ago, but my counsellor suggested making the sessions 30 minutes instead of an hour so we’d cover a larger period. It was extremely kind of her to do so and she was under no obligation to.
Speaking to her earlier, we discussed how the oncologist’s job is actually quite prescriptive. It is a matter of enforcing processes, evaluating results and responding to those results in a mostly regimented way. For example, you are identified as needing x type of chemotherapy. Within the chemotherapy cycle, there are checks a, b and c which are used to determine how well it is going. If something goes wrong, there are appropriate ways of identifying the issue, and then responding to it. For example, if your platlets are identified as being too low for treatment, you will delay the treatment by another week and check the bloods again, to see if the levels have recovered. Everything is constrained, and the approach is standardised insomuch as it can be. Some things may fall out of the standardised approach, such as where the individual gets an infection and the team need to find that infection, assess how dangerous it is and then help the individual fight it. For the most part, though, an established process is followed. The surgeons work is where a more creative approach must be adopted. It is where the individual specifics of the case must be properly dealt with in a direct manner.
The surgeons also offer up the next major piece of progress, allowing the treatment to progress further. As far as I understand, the success of the surgery itself will determine what comes next in terms of a treatment plan. Sometimes the surgeon will go in and find a different situation to what they expect in terms of the tumour. For example, they may go in to find that many lymph nodes have also been impacted, making the surgery more time-consuming and risky. The fact that I also have an unknown ‘mass’ to remove will undoubtedly make the surgery more complex. Perhaps that means that they are less likely to consider a full removal as an option for me, or perhaps it makes them more inclined to try if leaving the mass increases the perceived risk of me dying. I just don’t know, but neither did my oncologist. Or he wasn’t willing to vocalise his opinion on the matter. I’m sure he has an inkling what the answer is, but it wouldn’t be in his favour to offer up an opinion if there was a risk that the decision from the surgeons does not go in that direction. I’m sure it’s more than just a risk that such an event happens.
I keep thinking of it in terms of my work experience to try and offer myself some comfort as to why I could not get my questions answered. If I am on a project and a client is asking about the budgetary constraints which I am not aware of, I would not offer up an opinion on the matter as it is not my expertise. At very least, I would tell them that I did not know, but will speak to the appropriate team and get back to them. Either this or I would organise a meeting with the appropriate team so that they could discuss it. What the oncologist did is not too far from this, which comforts me somewhat.
They did not attempt to get a surgeon involved in the meeting, to offer an olive branch in the form of asking one of the surgeons to call me sooner to answer my questions, or to get some detail from the surgeons to offer up alongside the news that the case was being passed them. Perhaps there is a specific reason for none of these things happening. My guess is that the teams are considered completely separate functions, divided not only by discipline, but by the actual hospital they operate from too; my oncology team are part of The Christie, whereas the surgery team are based at Manchester Royal Infirmary. That means that the oncology team probably do not have any right to ask for their time. I get that, but it would be beneficial for the patients if the oncology team could try and coordinate such a thing. It may lessen the anxiety ridden month that follows the news that your case is being referred to the surgeons. The surgeons must have representation on the multi-disciplinary meeting after all, seeing as that is the meeting where it is agreed that it can be passed to their team in the first place.
But anyway, criticisms aside, the task is to now keep myself busy and not dwell on what may or may not happen. For a month I have no treatment, no meetings, no appointments. There is a comfort in that. I’m trying to embrace it, use the time to start doing some normal ‘life’ things. Anna and I drove to London to spend a few days back in our apartment. On Friday, I attended some work drinks for my manager who is moving on from the company I work for. She has been a great support throughout the last 8 months. It is sad to see her go, but it was nice to do something ‘normal’ again in attending her leaving drinks. I hadn’t seen anyone from work for around 8 months, since I was first in A&E with abdominal pain, on a random Monday evening. Everything changed so quickly; nothing that was previously considered ‘normal’ feels normal anymore.
I got a little carried away and had three pints. It was over the course of about 4 hours, but I ended up getting in late, eating even later, and going to bed even later than that. Not a lot of alcohol is required to get my anxiety going these days. I lay awake at 5am, after getting a few hours sleep, in the spare room of my flat in London (the master bedroom is being rented to a friend Matt as I couldn’t afford the mortgage whilst not working). I felt angry at myself. My mind paced yet further through the emotional landscape. Anger turned to worry. “Why am I drinking three pints when I’ve got a tumour? Could it worsen my condition to an “extent that the surgery could be unsuccessful? Worry turned to pure pessimism. “Who am I kidding, I’m not going to get the surgery.” It sucked.
I wish I could be easier on myself – the logical part of my brain knows that I don’t drink often, and three pints is far from a ‘session’ by normal standards. Anything that can make you feel bad under these circumstances, will. It feels like it is part and parcel in these uncertain periods. Nothing is good enough, everything is intimidating. Any cracks in your mindset start to break into holes and the vulnerabilities you harbour start to rise to the surface. Perhaps it is necessarily to feel it to allow you to then process it all properly.
Saturday was busy. I needed it to be. We met friends for brunch in the morning before walking Lucy around Clapham Common. There were sausage dogs everywhere, and Lucy had a great time playing with dogs her own size for once. Then we went to a friend’s birthday drinks in Tooting. By about 17:00 we were back at the flat, getting ready to host my brother in law, Keiran, and sister, Josie. It was Keiran’s 30th birthday. He seemed to like his presents from the family which was nice! I also made him some double chocolate chip cookies. He had about half of one but I wasn’t offended – he is currently trying to eat less ‘bad stuff’ and they definitely fall in that category. The other 30 are being eaten by anyone else who walks into the flat. I’ve been sending people home with multiple just to make sure they don’t go to waste (and that the responsibility to eat them isn’t all left to me).
On Sunday, my brother was competing in a cycling event in London. A few of my family members, including my parents, all met up in central London to meet him afterwards and go for food. I think the previous few days had caught up with me. We sat outside waiting for him to finish, but I managed to get incredibly cold, despite wearing two coats, a long sleeve top and a t-shirt. I’m not sure what was going on really. Once he had finished, we went to a local pub for some food. I was falling asleep and wasn’t good company at all. Anna and I left early and made our way home. Lucy seemed tired too so I think she appreciated it – the previous day had been a lot for her too. That did mean she couldn’t beg for any more food, though, so perhaps she was a little bitter. After getting home and napping for a bit on the sofa, I managed to force myself to run 4 miles. That felt pretty good and helped me a lot mentally, even if it absolutely killed me physically.
So, the mental back and forth continues. At times I manage to embrace my inner stoic and feel like I’m at peace with what is going on. I am in many ways. I accept the negative statistics that get plastered on every pancreatic cancer website, I just refuse to accept that it is inevitable for me to become part of them. If I do, I’m ok with it, but I want to know if that is the case. Currently, I reside in a place of limbo. Getting out and staying active seems to help, though it tires me out and leaves me feeling exhausted. I’m finding keeping busy to be a double-edged sword. It is good, but also leaves me feeling like I am avoiding some unpleasant realities about the situation. Those negative thoughts only emerge from the shadows of my mind when I have pockets of time to myself; it makes me realise that I am probably struggling to accept it more than I allow even myself to believe.
Perhaps I am over-dramatising the importance of the next step. I’ve really convinced myself that it is either full removal, meaning I can still be cured, or nothing. Not nothing meaning that the surgeons won’t do anything, but nothing that could lead to me being cured. I’m sure it isn’t that straightforward, but the oncologist couldn’t give me any answers of substance when I put the questions to him. As opposed to accepting that he really may not know, I can’t fight the thought that he does know, but it isn’t down to him to break the news to me. I’m sure that I am being paranoid and just not recognising that my brain is moving into a new phase of contemplation, paranoia, but I never got any reassurance from him that allows me to easily shrug off those thoughts. I’m heading to Dorset on Wednesday anyway. Lets see if the sand on the beaches, sound of the ocean and salty breeze helps improve how I am feeling about it all. There’s only one problem with that – I hate the sea and everything in it. It is lovely to look at, though.