AYA

Cancer: When “Young” Doesn’t Equate to “Fun”

godley93, , , , , , , , , , , , , , 4 Comments
At My Best Friend’s Wedding – 08.04.23

I originally wrote this with the intention of sending it to a few media outlets, but I never did and it has been sat in my drafts for a while, so I thought I’d just post it. Enjoy!

The English language has some interesting colloquialisms, especially around the concept of being young. Many of them aim to bestow wisdom upon the subject, such as the popular idiom “youth is wasted on the young”. Personally, I find the risqué ones more engaging, like “young, dumb and full of…”. I won’t finish it off, no pun intended.

I feel strange describing myself as young. Not because I don’t feel young, or even that I don’t consider myself to be young, but because I’ve heard so many nurses, doctors and oncologists use the word to describe me, that I have started to associate it with my diagnosis. It is usually said in a tone of pity with accompanying wide-eyed sympathy. People are nice, and I’m grateful for that, but I’m still an adult who craves a more complex response than wide-eyed pity. For I was diagnosed with stage 3 pancreatic cancer at the ripe old age of 28, placing me firmly in the Adolescent and Young Adult (AYA) category of cancer sufferers.

To qualify for this coterie, you must be between the ages of 15 and 35, and you must, of course, have cancer. We don’t let cancer muggles sit at the table with us, just like we don’t let grey-haired sufferers of the malady have a piece of the pie either. It is our way of establishing exclusivity in a club that no one would ever voluntarily join. Previous cancer sufferers are welcome too, seeing as they can contribute to the woes of emotional turmoil that come with a cancer diagnosis in your youth, but that is it. Ok, perhaps those bereaved due to an AYA person dying of cancer can also come along. Perhaps they can invite their parents too. And their dog, who probably misses them dearly. But that’s it – period.

How it works if your age is borderline, or if you cross the bracket during your treatment, I’m not entirely sure. Let’s say that I was 37 years old – would I be turned away from the focus groups? Would my submissions to the AYA magazines be printed off by the editor, only to be scrunched up and thrown into the bin? I’d hope not. Lucky for me, I qualify, being the ripe age of 30 now, and I have a few years left before I must consider my maturity into the next category of cancer sufferers, whatever that is.

I’ve been navigating the world of being ‘young’ with cancer for over a year now. Things have turned out relatively well for me. The first seven months of chemotherapy showed positive results, shrinking my tumour by about a third. Despite this, I was told that the progress was unlikely to be enough for my tumour to be removed in surgery. Due to my age and health, the oncology team still passed my case over to the specialist surgeons for review, in hope that something could be done, even if a full removal was not possible.

The universe had other plans. I woke up following my surgery to the news that my tumour had remarkably been fully removed, but that they had to also take out the entirety of my pancreas. If that wasn’t enough to process, a few other things were removed too – over half of my large intestine, gallbladder, spleen, bile duct, some of my stomach and, for good measure, some of my liver. Two major arteries were also reconstructed, a sentence which still doesn’t mean a lot to me; it conjures up images of a surgeon laden in green overalls but with a yellow hard hat on and a hammer in hand, which emphasises how immature my understanding of surgical procedures is. I wish to keep it that way.

The recovery was harrowing. I wondered if I’d ever feel normal again, especially now that I am insulin dependent (AKA Diabetic). Nearly a year on from the operation, I do feel much better than I thought I would, but everything is very different. My life is punctuated by random abdominal pain and when I walk, I feel tension in the area around the scar, which intricately snakes across my abdomen. It feels strained. Most of the time I manage to forget about it, but it does bother me from time to time.

Sometimes, after meals, the skin around the scar bulges out, making my stomach look malformed. It can feel particularly uncomfortable when this happens, and it is the primary reason that I am slowly adjusting my diet, eating less of the foods which seem to make this happen. Of course, it is mainly carbohydrates, which is easily the best food group, but as I am diabetic, I already view them with suspicion, so it is probably for the best. Carbohydrates are, after all, trying to kill me. As the body breaks them down, they cause the blood sugar levels to increase. When I eat them in the evening, I find my diabetic alarm going off more frequently on my phone throughout the night. It is a sharp alarm noise and it is awful to wake up to. I’m essentially flipping the Pavlovian method on its head and treating myself to not eat carbohydrates in the evening by being woken up by a piercing alarm sound all night. It is slowly working, but carbohydrates are a hard habit to kick. Don’t even get me started on not eating chocolate in the evening.

One advantage of the scar is that getting it out has become my new party trick. It used to be my ability to put the entirety of my fist into my mouth, but I’ve retired that move. I was once at a party where someone did a backflip in front of a room of onlookers, who all burst out into cheers and applause as his feet landed safely back on the ground. “That’s a real party trick,” I thought to myself. I like to think that these days I’d give backflip guy a run for his money. A scar as big as mine is adaptable – one day I was hit by a double decker bus, the next I was attacked by a shark. The scar is all the proof I need. It probably wouldn’t erupt a room into jeers, though. It is more in the ‘interesting’ category as opposed to ‘enthralling’. Doing a backflip is interesting and enthralling… It really is the ultimate move. I don’t attend parties anymore, so I guess it doesn’t matter.

Of the things I’ve learnt from going through a cancer diagnosis, the most prominent lesson has been that people change in life. I found myself having to mould aspects of my personality into a different shape to better accommodate the challenges that I was now faced with. The treatment is gruelling; I constantly surprised myself with how much I could withstand. Chemotherapy, surgery, the feeling that death was always just a few steps behind me. I found a way through it all, but the journey wasn’t smooth. Support from friends and family is essential, but even that wasn’t always enough.

It is difficult to unload your true fears and compulsions onto people so close to you. They are going through it too. In some ways, it is harder for them, as they have no control over the situation. Sometimes, they are pedestrians, standing idle on the side line whilst you face obstacle after obstacle – the pain, fear and devastation which you become accustomed to, but that they never quite understand the extent of. The unknown can be more dangerous to the individual as it presents an inexhaustible amount of horror; friends and family can be locked in limbo, whilst you travel the length of your mental capacity, in search of something to keep you going, no matter how bad things get.

This is why the AYA community serves as such an important tool for people like me. Something that you are commonly told when you are young with cancer is that it “should not be happening to you.” Why wouldn’t it be happening to me? Why not now? Sometimes we draw the short straw, and there is no reason as to why. When I was first diagnosed, I wondered what I did to deserve this. Those thoughts do little to comfort you, and when you must deal with the reality of having cancer every minute of every day, you don’t benefit from having a victim complex about the situation. Stuff happens in life and sometimes, that stuff happens to suck for you in particular. It isn’t easy to keep that level of clarity all of the time, but it is a helpful tool to lean on when going through a hard time, whether that is physically, mentally, or both.

Conversely, there are still people that meet the news with a strange callousness that I don’t understand. The people who hear that you have cancer, and respond by saying “you’re young and healthy, you’ll be fine.” I’m just glad that these people don’t tend to be oncologists, because I think the death rate among AYA cancer sufferers would be far higher if the consensus was that anyone young is invincible and, thus, will be fine. One of the first things I read after being diagnosed with my cancer was that people who are diagnosed with it seldom live to the 5 year mark from diagnosis. No one can prepare themselves for something like that, and to fall back on the notion that age guarantees survival would be careless. Optimism is a powerful tool, but naivety can be destructive. Sometimes, facing up to the reality of the fight at hand helps an individual to push their limit further.

AYA charities provide a space where young people with cancer can speak and relate to each other. In my experience of joining support groups of all ages, where many attendees were over 60, I left feeling more isolated. It reinforced a feeling that what was happening to me was unjust. AYA reminds you that you are rather unremarkable and that there are others experiencing very similar feelings to you. It makes a huge difference.

Further to this, many cancer charities are set up to support a traditional person with cancer, but not anyone else. I commonly find opening hours of charities to be Monday – Friday, 09:00 – 17:00. Although I understand why this is, it isn’t helpful having a workshop or support group in the middle of the day. I’m not retired, and I can’t afford to be signed off work forever. The AYA charities are better equipped for this, and I have attended many evening sessions with them, where I am not so constrained, and having to beg for time off in the middle of the day to attend an event.

Despite all of this benefit to young cancer sufferers, AYA charities go relatively unnoticed. Because of this, I wanted to write a piece on how much I appreciate their existence, and how they have helped me through some tough situations. In the UK, I have attended a few Shine events, and am looking to join their summer meet up in London now I am living back here, and in the US, I have had multiple pieces printed in Elephant & Tea’s magazines, as well as joining some very interesting events which they run; some of the stories I have read in their magazines have really resonated with me, and I find myself going back to read them frequently.

So, although you may not be an AYA cancer sufferer, I’m sure you have experienced the negative effects that cancer can have on an individual, whether they fall within the AYA category or not, and on the people around them too. In future, if you are looking to raise money for a charity, consider seeking out one of these smaller AYA charities and doing it for them. I know that they’ll really appreciate it, and you’ll be contributing to a service which makes a huge difference to people like me.

Dealing with Cancer: Support Groups

godley93, , , , , , , , , , 17 Comments
Dee, Robbie, Me, Anna: Having Lunch 04.07.22

Support groups are a common recommendation to cancer sufferers. I’ve heard various views from others about them and have a few of my own experiences now. My overall feeling is positive, but it has taken me a little bit of time to find some that felt right for me. Even now, where I feel that I am comfortable with my diagnosis and possible fate, I can find them tough. None of the ones I attend are regular meetings and I have not become part of a group so much. I’ve more found myself joining events, where we all come together and share our experiences in some way. There are a few charities that I am becoming more familiar with which I have found helpful for different reasons.

A few nights ago I participated in the Perkatory event for Elephants and Tea, a not-for-profit based in the United States who support Adolescents and Young Adults (AYA) suffering from cancer. Six of us were asked to read out our Dear Cancer letters on the call – we were all published in their most recent magazine edition, alongside a number of others. As the magazine’s organisers are American, it was scheduled for early evening EDT. That meant that it was at 19:00 for the majority of those on the call. Many of those who joined were audience members, so I’m not sure where they were all joining from, but everyone else who was reading were based in the united states. I was joining at midnight in the UK. I’m not very good at staying awake that late, so I was already forcing my eyes open when the call started and it lasted for an hour and a half. Luckily, the content was all very interesting and there were some fantastic pieces being read out. That made it easier to stay awake, but also harder to fall asleep once the time came. I’d fought through the tired period and was in the deliriously awake phase.

It took me a little while to hear about the AYA community. There are some good charities around that specifically target the group, such as Shine in the UK, and Elephants and Tea in the US. Before I realised that these charities existed, I tried to go to a support group at The Maggie Centre in Manchester. It wasn’t sold as a support group per se, as it was a creative writing course. Its function was to act as a support group, though, utilising creative writing as a means of seeking catharsis, and specifically utilising writing as a means of processing your feelings in front of a group, as it allows you to open up in a less direct way. Seeing as I had created the blog at this point and was starting to do a little bit of creative writing, I thought it would be a good opportunity to both seek support whilst improving a new skill. Unfortunately, it wasn’t quite what I thought it would be. Firstly, it wasn’t a ‘course’. Perhaps I should have realised that beforehand, but I didn’t. For some reason, I thought we would be learning skills and techniques for creative writing – how to develop characters, make our plots believable etc. I had built it up to be an actual training course in creative writing, but it wasn’t. That is my own fault for not looking into it enough.

The course was actually more for poetry, but it wasn’t about bettering your poetry necessarily. Our instructor would give us certain prompts and encourage us to talk about our experience through those prompts, but it was all very ‘free flow’. We’d have a few minutes to write about something based on a prompt. Some of it was extremely creative, including the methods used to diversify people’s prompts. For example, in the first game we were asked to choose a number between 1 and 100. Once we had all chosen, we were asked for our number one by one. The woman who ran the group would then refer to her magazine, which had a list of ‘100 Best Tips for Improving Your Life Without Trying’, or something to that effect. Once we had a list of the tips which adhered to the numbers we had chosen, we had 5 minutes to write something based on them. It was a cool idea. Inspiration didn’t rush to me, but I got a few lines together. That aspect of the session I really liked – it was fun to hear what others had written and how they used the prompts to pull out their experience. My main issue with the group slowly revealed itself, however, as I listened to what others had to say.

What I did not realise before the session was that the context of each person’s experience with cancer is extremely important in how useful it can be for you… or that is my opinion, anyway. This group was all people who were either bereaved, with a loved one passing away from cancer, or people in remission, with some even considered to be cured as they had been rid of their cancer for years. Although it was interesting to hear their perspectives, it did not feel particularly helpful to me in this context. At this point, I was a few weeks into chemotherapy and still rather terrified of my diagnosis. There is probably an argument that listening to someone in remission’s views on cancer could be encouraging, but I wasn’t in a place where I was ready to hear it. It was not the poems of the people in remission which troubled me, though, it was the poems from those who were bereaved.

I sat listening to a woman’s poem who had tragically lost her husband to cancer a few years prior. Her poem described the pain she experienced on a daily basis, even years after his passing. She described the emptiness that screamed out from the passenger seat in the car that they had bought together; the nights alone in bed. There was nowhere to hide – I was in a room of strangers, with one reciting to me the way that Anna will likely feel if I do die of cancer, or so I thought. I then started thinking about my family and friends – what would they feel? Her words were like glass shards pressing into my ears. I wanted to cover them and scream just to make it go away. All of my greatest fears were dancing around my head. It wasn’t enough to be scared of my own fate at the hands of my cancer, facing an unknown future containing boundless amounts of personal pain… I now had to imagine how that would impact my loved ones. I tried to tune out but it was impossible. After about 20 minutes of this, my GP called me to discuss a few issues I had been having. I was expecting the call, so had warned the woman leading the session that I’d need to excuse myself at some point. As I left the room to answer the call, I breathed a sigh of relief. “Thank God,” I said to myself as I shut the door behind me, “I can take my mind off my family’s grief and just talk about my stupid deadly cancer.”

The GP was calling me to discuss a recent episode that I had experienced. Just as I had fallen asleep the night before, I’d suddenly bolted awake. Straight away, my mind was in panic mode, but I had no idea why. Nothing I did would relieve it. I paced the room, telling a very tired Anna that I couldn’t settle. I downed water, made my way through a few yoga poses and tried to breath slowly, but none of it worked. Eventually, I grabbed my puppy Lucy and lay in bed hugging her. I woke up with her in my arms at 5am. I must have nodded off. I woke up feeling tired but better. The experience had shaken me and I’d left a voicemail with my GP that morning – this was her returning my call. Despite this being quite a traumatic event, it was a welcome distraction to what I was experiencing in the creative writing course.

The fact is this: the group that surrounds you is important. If you struggle to relate to the experience being beamed at you, it may in fact cause you more distress as opposed to relieving you of any. Hearing the perspective of someone who had been bereaved did not provide me with a useful perspective for where I was at in my journey. It gave me a direct line into one of my biggest fears – that the ones I love most, my family and closest friends, may struggle to get past my death for years, if it comes at the hand of my cancer. Such a perspective served no purpose in my life at that time.

Since then, I have found some use in hearing those words. I have decided that I need to support my family as much as possible whilst I am healthy enough to do so, so they do not reflect on my cancer as evil, immoral, or any other negative adjective. Whatever happens with my cancer happens. If I miraculously live until 70 or die next week, it shouldn’t matter. I’ve had a good life and everyone who cares for me should relish in that. Any sadness they experience is for a good reason, because we cared for each other dearly, made amazing memories together and changed each other’s lives for the better. If that isn’t something to celebrate, then I don’t know what is. It is easy for me to say these things now, and I would struggle to implement them if it was my friend or family going through this, but I’d like to think that I would find a way to over time. I really hope that they do if it comes to that.

Another problem with the group was more physical… they were all very different ages to me. All of them were over 60 years old. That is not always a problem per se, but it does contribute to you feeling that you cannot relate to all of the experiences that they speak of. The same thing can be applied the opposite way around – if a 65 year old attended a support group where all attendees were young cancer sufferers, they may struggle to relate with some of the specific issues being raised. Of course, some issues you can relate to each other over. I attended a few sessions with Pancreatic Cancer UK, and that common link (i.e. the fact that we all had pancreatic cancer) helped to bridge this divide. There were many people on that call who had a very similar experience to me, and it really helped to hear their perspectives. In this session, however, no one had the same cancer as me. The result is another wall forming between you and those around you. It makes you feel like you are in the wrong place and doing the wrong thing. That alienation does little to comfort you.

It doesn’t mean that I can relate to everyone just because they are within a certain number of years from me. In one of the sessions I attended, a man in his 40’s was making an argument that having Myeloma, a cancer of the blood, is hard compared to having a cancer where you have a physical tumour. He stated that not having a single place in the body that you feel you are fighting is difficult and leads to more mental stress. Although I understand his point, I sat feeling a little lost. I wasn’t going to start a debate on a support call, but it seemed an unusual place to raise such an issue, not that I think he shouldn’t raise it if he has it on his mind. I can’t see my tumour and have no physical concept of it really. The only difference is that I moan about my pancreas a lot, whereas I’d imagine he complains about his blood a lot. I actually complain about my blood a lot too, but that’s because nurses constantly want to pull it out of my veins with needles, and I’d rather they wouldn’t. I understood that this was something he clearly felt, though. It isn’t so different to my thinking, when I sit reading pancreatic cancer statistics and feeling like I’d rather have any other cancer in the world. That doesn’t mean that I actually believe those thoughts, though. Cancer may make us more humble in general, but we retain our own superiority complex. Our cancer is the worst, our diagnosis is the most scary, we’re the most lucky if we overcome it and everyone should listen to our story because it is the most interesting. You can’t get rid of a cancer of the ego! Besides, I am the strongest person to ever fight pancreatic cancer; I bet it regrets trying it on with me now.

AYA charities are so important because getting cancer at a younger age is more unusual, though. Since joining a call with Shine, and getting involved with Elephants and Tea, I have felt a much stronger connection to the community. As I sat listening to the other’s reading their Dear Cancer letters, I felt a sense of unity. Even the audience members, many of them faceless avatars sat on a call, were engaging through the chat function. It felt heartwarming and special. That feeling overpowers a lot of the difficulties that I had experienced when attending the session at The Maggie Centre. It isn’t that I related to every single thing that was said on the call, with none of the attendees having the same cancer as me, but the setup just felt more right. It was people in their 20’s, 30’s and 40’s giving their perspective on their cancer. Some were in remission, some still fighting, some were stable.

Perhaps age was more irrelevant than I thought. When I think about the times I’ve felt a benefit from these type of sessions, the biggest factor has been how much I feel that I can relate to the people and the things being said. On the Pancreatic Cancer UK call there were many different ages and I related to all of them. We had similar struggles – the Folforinox chemotherapy, dealing with scary survival statistics and getting our heads around the constant Creon usage. When I joined the Shine call, we spoke about the constant drag that comes with a cancer diagnosis, and how we are always fighting an uphill battle with it. Then on the call with Elephants and Tea, we were united through a common purpose – writing cancer a letter, and exposing ourselves in whatever ways it affected us personally.

My issues with The Maggie Centre group were probably varied. The group already knew each other, so it felt like I was an outsider from the start. If I’d have carried on attending, that would have changed, of course. What would I have to sacrifice to continue attending, though? Hours of listening to perspectives which disturbed me and kept me awake at night… It wouldn’t have been worth it.

The fundamental issue felt that too many people in the group were at a different stage of the journey to me, or didn’t have the right perspective for me. People who are grieving are going through their own hell, full of painful challenges which haunt them, probably in a similar way to how a cancer diagnosis haunts its victim…but that doesn’t mean the journey is comparable. Grieving forces one to be conscious of the finality of death – an unwanted conclusion to someone’s story for those left to contemplate it. In my experience, I have always managed to muster some hope with my cancer. Even when it has felt bleak, I’ve known that I can still beat the odds. One day I may have to deal with a more final warning from an oncologist – but even then, I can attend clinical trials, keep running, getting myself to the gym and spending time with my loved ones. There is still a life to live so long as I am capable of pulling air into my lungs and I open my eyes every morning. Death does not provide that same comfort, but it does provide a different sort of comfort… a reassurance that their pain is over and a subtle reminder that billions have suffered the same fate, and we will continue to do so.

Even with me finding some support group-type activities which work better for me, I still think that they take a lot out of me. I’m sure that this is another thing of personal preference, but my experience tells me that it is tiring to do these things too often. Having a shared experience, hearing others utter things you have thought and said, is a powerful thing, but it doesn’t relieve you of those feelings. That sense of community is amazing and has its place in my personal struggle. It is still hard to listen to other people’s trauma and pain. For me, I need space to try and live as normal a life as I can under the circumstances. That is the best therapy for me. Sitting around with friends laughing, getting to the gym and playing with my dog Lucy are all amazingly therapeutic for me. After all, I am not just Pancreatic Dan the Cancer Man, I am Dan the runner, Dan the sausage dog owner, Dan the brother etc. My life isn’t my cancer, no matter how much it dominates my time and energy. I know people who refuse to attend any kind of sessions about cancer, and others who have thrown themselves into things like group sessions. They certainly have a place in my life, and I like to dedicate my time to them, but I don’t like to throw myself into them weekly. I still haven’t established quite how often that I think they most benefit me, but I know that I need a little time to unwind after them, even if I leave them feeling positive and happy. The AYA charities are helping me find sessions which do benefit me in a unique way, and I can’t wait to attend more of them in the future… especially if I get to read out a piece I have written, like I did at the Elephants and Tea Perkatory event. Me me me me me!