Scan Results

Results Day

godley93, 23 Comments

The Road to Recovery

I woke up with a mission today: bake chocolate chip brioche. I had seen it in the shop a few days ago and excitedly purchased it. In defiance of my status as an insulin-dependent diabetic person, one of only 400,000 in the UK apparently, according to a stat I read a few days ago, I set off home with a vengeance against my sweet treat. This brioche bread is about to receive a crash course on the topic of gluttony. It got me excited.

To my disappointment, it was a little tasteless, which is probably the biggest insult you could say about something which is meant to be soft, buttery and full of chocolate. It has the makeup of greatness, yet it tasted rather bland. It was concrete proof to me that if you want something done properly, you have to do it yourself.

The recipe requires a total of 2 hours of proofing time, as well as a good 20 minutes of kneading. I recently invested in a proper Smeg stand mixer, which comes equipped with a dough hook attachment; as a result, I hunt out baking recipes with demanding kneading times so I can lurk over my stand mixer, watching the dough hook do its magic. The whole process is magical. It makes me rather giddy as I watch the ingredients bind together, before being pushed and pulled around the bowl repeatedly. I imagine the dough hook is a bully and the dough is a child with an abundance of lunch money. A more sinister side of my personality kicks in when I’m baking.

Of course, I’d hate to see someone be pushed around in real life. Sometimes, when I’m watching a tv show which contains some kind of bullying scene, I flinch at the thought of someone going through it. It’s awful. I’m a decent person underneath, I promise. Baking just brings out the villain in me.

Between making and baking the dough, and playing some mindless games on the Xbox, I managed to dissolve the morning away. By the time it was 12:30, I was starting to get some faint butterflies in my stomach, in anticipation of the afternoon to come. Whenever my mind went back to thinking about the news I would be receiving later that day, I started feeling anxious and fidgety.

We set off for the hospital at 13:00, arriving about 15 minutes early. Despite all of my knowledge of delays at the hospital, and how painful it is to sit in a hospital waiting area whilst the notification sound of the patient screen rings out again and again, displaying names other than your own, I still blindly hope that arriving early may mean being seen early. It doesn’t. It never does. Don’t be so naive, Dan. What an idiot you are.

After waiting about 40 minutes, a familiar name popped up on the screen. It wasn’t mine, but that of my late grandad – John Ratcliffe. My grandad and I were close. There’s a picture of me sitting on his lap when I was a child. Both of us have big smiles painted across our faces. I had white hair as a child, and we look strangely alike. His hair was white as a result of old age, mine was white with youth; a precursor to it turning as bright blonde as summer sunlight. The picture immediately came to mind as I read his name. It made me feel like he was there with us in that waiting room. He probably never guessed that this would happen to me in my 20s. I’m glad he never had to see it happen to me; I hope it won’t happen to anyone else in my family.

Earlier in the day, at around midday, I received a call from a number that I didn’t have saved. It began with ‘0161’ – the area code for Manchester. My heart started to race. What does this mean? Have they found a tumour so bad that they felt it necessary to call before summoning me in? Dread ran through my fingertips as I accepted the call and lifted the phone to my ear.

It was a hospital in Manchester calling, but not The Christie. It wasn’t even Manchester Royal Infirmary where I had undergone surgery to remove the tumour. This was Saint Mary’s Hospital Clinic calling.

“I work for the Genetics department at Saint Mary’s. We’ve had a referral for you and would like to book an initial appointment.” Although I understood what the woman was saying to me, I was utterly confused. No one had mentioned that I was being referred to another hospital, never mind why it was happening. I asked for more information.

Eventually, after digging deeper, I came to the conclusion that this must be related to the genetic testing that I had agreed to during my first appointment at The Christie, back in November 2021. They had asked me if I’d be willing to have the genome of my tumour mapped, to help determine whether my cancer was due to an issue with my genetics, which would have implications on others in my family, or whether it was down to good old fashion bad luck.

When I put this theory to the woman on the phone, she responded with a confidence-building, “Yeah, that sounds about right.” I asked her if they’d need to do any tests, but she said that initially, it will just be a video consultation. Further tests may be required, but I will learn more in the consultation. We arranged the appointment and I hung up, relieved that it wasn’t something more sinister, but disconcerted at the timing of the call. It was my first true test of the day; the brioche had gone well, other than being a little over-baked. I didn’t have time to taste it before leaving as it was cooling down, so how it tasted was to remain a mystery until later.

It was an hour and ten minutes before we were summoned into the consultation room at The Christie by the omnipotent patient summoning screen. Of course, my name only popped up when I went to the bathroom. A good tip, if you are ever waiting in a hospital for an appointment, is to go to the bathroom – it almost always results in your name being called instantaneously. I wish I’d remembered that tactic an hour earlier than I did, but it did the trick when I remembered it. As I walked out of the bathroom, I saw my mum gesturing to me, indicating that I had been called.

We then spent another 40 minutes waiting in the small consultation room. A heavy silence sat in the air. Anna and I barely even looked at each other. It is strange how time can feel like it is both standing still yet passing relatively quickly. I can’t believe we were waiting another 40 minutes in that room. We must have uttered a total of 10 words to each other in that time. My stress levels were rising. I tried my bathroom trick, but they had cottoned onto it; I returned to the room to find Anna alone still. Shame.

Eventually, an oncologist walked in and introduced himself. “We’ve met a few times on your journey, I believe,” he said as he entered. I remembered him – he is a very nice man. Oncologists seem to have a casual swagger to them in general; not to the level that surgeons do (my surgeon rode into work on an old-school motorbike), but they’re pretty close. They remain professional, but you always feel that they would be immaculate under pressure, and they speak in a way that put you at ease. It’s a shame that what they are usually saying does anything but put you at ease. I feel like I shave a few years off my life every time I have to go to the hospital for scan results because of the tension that builds in my head.

After all of that waiting, the meeting lasted a total of about four minutes, which is probably what you want in this situation. A long meeting means there is a lot to discuss. A lot to discuss is bad. I want my conversations with oncologists to consist of a single word – ‘Clear’!

In the most nonchalant fashion, the oncologist told me that my scan is clear and that things are looking positive. The only warning he had for me was that two of my lymph nodes were slightly enlarged. He said that they aren’t considered a risk until they reach 1cm and that they are currently 5 and 6mm. They will need to be monitored, so another scan would be planned for 3 months time. If that is clear, the scan schedule will change to every 6 months.

I sat confused and asked why the scans weren’t going to be every 3 months for the first year. I’m sure that is what I had been told. I actually thought they had said that the scan would be every 3 months for the first 2 years, but I didn’t want to embarrass myself so lowered it to 1 year. He seemed confused at this. The whole experience made me wonder if I actually have a deadly cancer at all. Other than him saying, “Well done – you’ve been through a lot to get here,” the rest of the conversation carried an unusual tone. It almost seemed like the oncologist didn’t understand why this was news to me, as if it is more normal to receive positive results in these scans, as opposed to negative ones. The picture of pancreatic cancer I am used to being painted is very different.

He also asked me if I’d like to be followed up by the team at The Christie, or by the surgical team at Manchester. This question confused me a little too. Why would I want to be seen by the surgical team? They are experts at surgery, not in cancer. Surely being followed up by a team of oncologists is far more beneficial than being followed up by a team of surgeons.

To his credit, I said I’d much prefer to stay under the care of The Christie, and he seemed to understand that, and was immediately receptive to it. I also requested to leave the port in my chest for the time being. Having another procedure where a device is cut out of my chest is just not high on my list of desirable things right now. I want to enjoy time away from hospitals, as best as I can, and to try to restore some normality in my life.

So, the headline is that all of the treatment has worked. Remarkably, I am cancer free. It is still hard to fully appreciate and enjoy that fact. The experience of getting results is always so stressful that it is very hard to decompress afterwards. I still haven’t had a rush of relief or achieved a state of nirvana, but I have tried the brioche, and it tasted even better knowing that I don’t have cancer. That’s a start. Hopefully, the state of nirvana will come later. If it doesn’t, I’ll just keep making brioche.

Waitin’ Round to Die; Anticipating More Scan Results

godley93, , , , , , , , , 13 Comments

The Road to Recovery

I tried to kill the pain, I bought some wine and hopped a train
Seemed easier than just waitin’ round to die

Townes Van Zandt is widely regarded as a veteran of American songwriting. I don’t listen to a wide variety of his music, but I’ve loved ‘Waiting Around to Die’ since I first heard it years ago. I remember being taken in by the finger-picked guitar and grimy lyrics. It is one of those songs where the whole is greater than the sum of its parts. You can learn and play the main riff on your acoustic guitar, but you can’t make it sound as good as it does on the recording for some reason. I feel similarly about Bob Dylan’s song ‘Don’t Think Twice, It’s Alright’. That song is also primarily made up of a picked acoustic guitar pattern and a vocal, and is equally as difficult to play to the standard of the recording. Both songs are tantalising in their delivery.

One of the first things I did after hearing the song was looked into the background of the artist. The lyrics in the song are so painful that I wondered just what went on in his life that made him write such heart-wrenching words. I think the Wikipedia page dedicated to him best summarises his ills under the ‘Personal Life’ section – ‘Relationships’, ‘Addiction’, ‘Death’. He was married several times, struggled with addiction throughout his life, and, if the lyrics to Waiting Around to Die allude to anything, seemed to have an unhealthy fixation on death.

The song is so poignant and powerful that I remember seeing a live video of him performing the song, whilst a man watching in the background sat crying through the performance. It made me feel a little inhuman, and like I lacked empathy. The song evokes quite a different reaction from me. I find myself listening to it sometimes to remind myself that things just aren’t that bad. “At least I’m not feeling negative enough to write ‘Waiting Around to Die’,” I’d think to myself on those days where I find myself struggling. If I ever think I am at a point I could write a song like that, I would be very worried about myself. It is so grim in its outlook that it almost paints a caricature of just how painful life can be, and how downtrodden one may feel as a result of it. Although it provides the right environment for a fantastic song, it doesn’t seem to provide the conditions for a healthy and happy life.

One time I will agree that I feel like I am waiting around to die, though, is when I have to wait for scan results. The next set of scan results are particularly important as they are the ones which will vindicate me of all cancer treatment moving forward, should they come back clear. If the news tomorrow at the 14:00 meeting at the hospital is that there are no signs of cancer, I will be hospital appointment-less (not yet a term recognised by the Oxford English Dictionary) for the first time since being diagnosed in November 2021. It will also be the first time that I will not have any more treatment on the horizon and will be considered ‘cancer free’ (also known as ‘Under Surveillance’, but I prefer the phrase ‘Cancer Free’).

Today I went to do the pre-results meeting blood test. I must admit, I had a spring in my step. I’m trying my best not to assume that the scan will be clear, but I can’t help but fall victim to the prospect of hope. After a really tough month of treatment, I am finally feeling my health start to improve again. My head isn’t so cloudy in the mornings, I am managing to eat without feeling sick most of the time, and I’m finally starting to go on daily walks again; I’m having to build the distance up slowly, but am managing to comfortably do 30 minutes most days. It is crazy that this is the standard of fitness I now measure myself by, considering I used to frequently run 50 miles in an average week, but that emphasises the toll that cancer treatment has on your body. I’m probably still recovering from the surgery in many ways, and my blood sugar occasionally has its days where it throws all of its toys out of the pram and decides to be a nuisance all day, constantly going high or low, and refusing to get in line.

Despite reminding myself that there is no certainty that the scan results will be clear, I walked into the hospital feeling like I was exhausting a tickbox exercise more than I was undergoing something determining my fate. The signs are all pointing in the right direction – I had barely sat down in the waiting room after checking in at reception before my name appeared on the screen, summoning me into the blood room. As it popped up, I looked around me to make sure no other Daniel James Godley’s were standing up. It was just me. I made my way down the white corridor and knocked on the door.

One of my favourite nurses opened it, much to my delight. When you have had approximately 4 million blood tests, you start to understand the difference between a ‘good’ one and a ‘bad’ one. The good ones entail an uncomfortable prick of the skin, a minute of relative discomfort followed by a small shudder as you feel the needle being pulled out and replaced by cotton wool being pressed against your skin. The bad ones entail a wrench of pain as the needle is pushed too deeply into the arm, followed by a minute of gritting your teeth as an unsteady hand vibrates the needle, switching between the few vials of blood used during the extraction, followed by a twinge of pain as the needle is jolted back out. The good ones don’t leave much of a mark; the bad ones can leave a deep bruise for as long as a week, and can even leave your arm hurting when you fully extend it. One time I could barely move my arm for 3 days because it hurt so much after a particularly bad blood test. This nurse was firmly in the ‘good’ category, which makes the whole experience far more pleasant.

The deed was over quickly and with relative ease. As I sat there holding the cotton wool on my arm to stop the bleeding, another one of the nurses came in, who I also had a good relationship with. She had counselled me a few weeks earlier as I sat with my head in my hands during treatment, complaining that I couldn’t do it anymore and that I was feeling too overwhelmed. She had spent a good 10 minutes sitting next to me, encouraging me to fight on and reminding me of all the good things in my life – my wife, my puppy and my new found love for baking; the nurses particularly enjoyed the spoils of that last one.

“Dan! How are you doing? Are you feeling better?” She asked, as she picked up a few vials of blood and put them into bags.

“Much better thank you. I’m finally starting to recover from the treatment,” I responded. I then made reference to the blood nurse being one of my favourites. During my response, I said what I thought was the blood nurse’s name, which I immediately regretted, as I got a streak of insecurity in my head as the word came out of my mouth.

“Was her name ‘Aileen’?” I thought to myself, as I said ‘Aileen’. Something didn’t feel right about it. Her name is actually Elaine, which I confirmed by looking at her name badge in that exact second as I uttered the wrong name, so I wasn’t far off, but I still felt horrifically embarrassed. This particular nurse had asked me how my son was two weeks earlier, and I had to tell her that I don’t have a son, so that does make me feel a little better. No one mentioned that I had gotten her name wrong in this situation, though, and I wondered whether to make a joke of it. The moment had passed, and the conversation quickly moved on. It seems we are drawn 1 – 1 on awkward social faux pas – I got her name slightly wrong and she thought I had a son. Luckily, this should be the last blood test I have to do for a few months, so she won’t get the opportunity to punish me for a while. Hopefully, by then, she will have forgotten.

Now, I have a long 24 hours of waiting before I find out the full scan results. It is always painful being at the hospital waiting for scan results. The oncologists at The Christie are overprescribed with the number of patients they have, and there are almost always significant delays with the face to face appointments. As a result, you arrive for a meeting at 14:00, but frequently find yourself not being called into a room for at least an hour, if not longer. Then, you are taken into a room where a nurse takes your observations – blood pressure, heartbeat, height, weight – before being asked to wait for the doctor. That can entail another hour of waiting, only in a private room. Every time you hear footsteps approaching the door, your breath deepens and your heart sits in your mouth. Then you watch as a person walks past the room, and you let out a big gasp of air, before repeating the whole process again and again and again before you finally hear that fateful knock. It is painful – I’m not sure I’ll ever get used to it.

Perhaps the universe was trying to send me a message when Waiting Around to Die came on one of my Spotify playlists this morning as I made my way to the hospital to do bloods. I sat listening to the lyrics, and it oddly made me smile. I thought about myself waiting around at the hospital, straining over every minute that my name didn’t appear on the screen, summoning me into the office to learn of my fate. I thought about going through the whole process tomorrow when so much is at stake. If I am clear of any signs of cancer tomorrow, I can start to plan my move back to London, start seeing friends and start making concrete plans again.

There are so many simple things in life that we take for granted when we are healthy. Over the past year, I’ve barely been able to plan beyond the next 7 days with any certainty. There is always the chance that you’ll have a bad day or week on the chemotherapy, or that a scan will reveal some new devastating truth, which you’ll then have to contend with; whether that means more treatment, or that no treatment will suffice to save you, it carries with it an enormous weight. To have that weight lifted seems almost… unfathomable. I cannot wait to finally fathom it.

Of course, then I’ll have to attend these scans every 3 months for the first 2 years. After that, it’ll change to every 6 months. Then, if I make it all the way to 5 years without a reoccurance, it will change to once a year. That is a fairly daunting prospect, but I’ll have plenty of life to keep me busy in between. That is all we can really do with our free time – look to stay busy, finding things that best occupy and satisfy us. I’ve been writing a few special pieces recently that I’ve been really enjoying; I’m going to keep writing and see where it takes me – hopefully, as my energy grows and I feel stronger, I’ll find even more energy to put into it.

Still, I have another 24 hours of waiting to go before I find out what the scan results say. I’m getting ahead of myself and assuming the scan results will be positive again… Perhaps I will try and cook something nice tonight, or bake something to give to the oncologists tomorrow – they can’t give me bad news if I bribe them, can they? Whatever I decide to do, I need to do something. It is all better than waiting around to die – right?