railid

[railid]

Time

“Dear Doctor, We’re pleased to Welcome you to the Medical Register with Full Registration.”

It’s strange, I seem to place such emphasis on the anniversaries of events. But when I receive confirmation of an achievement many times that I thought impossible it does make me cast a look back on what I was doing on this day in years gone by. 

Three years ago today I had just completed my penultimate year of medical school. The longest year yet and I was exhausted. I had one day left of blissful unawareness that there was a problem. But right on cue before I got to go on a supposedly relaxing holiday I was told there was a fair chance that I had cancer and I needed urgent surgery as soon as I returned. What a mood killer. That’s not what you want to hear when you have just bought your chick-flick read and heading to a Greek island for some sun, sea and sand. I then had to go down a horrible road involving two major operations, causing a lot of pain and losing my voice for 8 weeks (with the chance it would never come back), nausea and vomiting for a number of months. I then had radiation treatment where I became so radioactive I had to be locked in a lead lined room alone for a week. And then had to be in isolation from friends and family for further time. In preparation for this I had to be starved of metabolism hormones for over 3 weeks which was truly awful. The two combined was doubly horrible.

Two years ago today the best thing that happened was that I spoke to my now boyfriend for the first time - a light moment/distraction in the circumstances which made me smile. The less good thing was psyching myself up to start essentially doing my cancer treatment again. Nine months after having it the first time and nearly a year since the nightmare began, I still did not know what was going to happen to me or if the treatment had even worked. I had worked so hard to mentally and physically prepare myself as I can see in my past words - knowing how horrible it would be to do it again. (https://railid.tumblr.com/post/125260832067/introduction)

One year ago today, I had graduated from Medical school and was preparing for starting work. I passed my finals after returning for only 4 months, having been off Medicine for a whole year. I had to return onto a placement in Oncology, having only found out I was in remission 3 days before. I suffered many people saying patronising things, a Registrar laughing at how I did an examination as I was a bit rusty when I first went back - I couldn’t even explain why as it was in front of a patient. When I then did explain to some supervisors some became awkward and didn’t know what to say. But somehow I rallied round, worked the hardest I had ever had to and managed to jump through every ridiculous hoop they put in my way. 

And now I am here, and I’m happy and a fully registered doctor (upgraded from my provisional license). I can’t believe it. 

[railid]

I’m fine now.

When I was first diagnosed with thyroid cancer a lot of people were keen to inform me of about people they knew who had had the same condition.

My sister-in-law had thyroid cancer, she’s fine now.

My cousin had thyroid cancer, he’s fine now. 

My uncle had thyroid cancer, he’s fine now. 

I think they probably were trying to make me feel better and less scared. Unfortunately they failed to gauge that actually it didn’t reassure me at all. In fact I always thought, “well if these other people are all ‘fine’ then surely that increases the probability of me being in the percentage that isn’t fine”. I kept wanting to retort, “Erm have you not heard of that recent blockbuster ‘The fault in our stars’? Did you know that it was based on a real person who had terminal thyroid cancer?

They weren’t really saying it for me though. They were saying it to reassure themselves, to make them feel better and not worry about me so much. It was a little patronising though. It made me feel like they were belittling the severity of my illness, that they weren’t acknowledging how scary everything was. 

What did they mean by this adjective ‘fine’? Did they mean these people were in remission? Did they mean they were functioning at life, for example they had to return to work? Did they mean that said person had either informed them, or created the illusion they were fine now essentially to make you feel more comfortable? I mean I have to admit that I have said the exact phrase when explaining it to new people. It minimises the tension in the room and makes those shocked faces that look upon you like you are weak, disperse more quickly. It gives them permission to not feel so outwardly sorry for you and to move the conversation along. But when I say, “I’m fine now”, its not because I want to, or even that it is true, it is because I am trying to make you feel more comfortable around me. And this stems from the hundreds of encounters of those I knew acting very awkward around me when I got ill.

There were people who I had been friends for months or even years who could not look me in the eye. They avoided talking to me because they didn’t know what to say, and that really hurt me. I was lonely, my confidence was knocked so greatly already. It involved me having to invest huge amounts of effort, time and communication skills to put others at ease and hence reduce the stark rejection I was experiencing. I didn’t really speak about how I was or I how felt, I just tried to concentrate on making the other person talk about themselves, smiling when I didn’t feel like smiling and hoping that they felt comfortable enough that the next time I wouldn’t have to always go initiate the conversation. Others on the flip side didn’t seem too fussed that I was ill at all. There was often the perception that because I didn’t lose my hair, I hadn’t suffered. I guess it was also partially my own fault, I did everything in my power to hide my suffering to protect all the people I loved. But it meant that all my pain laid internally raging but externally silent. Most people could have easily assumed it wasn’t there at all. 

Incidentally on the topic of ‘The Fault in my stars’, I have only watched it once. Just on my own. It was a month after I was diagnosed. It didn’t make me cry. And at that point I hadn’t shed a single tear since my diagnosis. Not even when I was told. I found it really strange when in later weeks/months I saw friends post on Facebook about how they loved the film and how it made them cry loads. I was torn how I felt about this. It some ways I thought it gave good awareness. On the other hand I was offended how people were deriving entertainment from a very sad story (almost like they enjoyed the emotional roller-coaster) and how they could just turn off the TV and it was over. But it was my life, day in day out and it wasn’t just a film I could switch off. It was my reality. 

I recently had a dream. Or rather a nightmare. 

I dreamt that I was looking at a scan of my body, I had asked the doctors to view it in the same way I do now for my patients. My cancer had spread to my bones, my lungs, all over. The doctors did what they could and gave me the same treatment as last time but it didn’t work They told me there was nothing more they could do. All I kept thinking was how I should known what was happening as I has so tired all the time, and I thought back to how I had recurrent bone pain in my left shin for over a year before I knew I was in remission. Maybe they had missed it, and it had been there all along. 

I woke up, it was 03:00. It was following that confusing semi-awake state where you cannot distinguish dream from reality. I told myself off, don’t you dare start thinking about it! You just cannot. I had to be up in 3 hours and I had fallen asleep gone midnight. I had a 13 hour shift the next day. I luckily managed to fall asleep again, but that terrifying muddled sleep which doesn’t give you rest. 

At work that day I facilitated the discharge of a number of patients, reassured worried nurses, verified my first death. I sat with a man in his 80s who was really scared and crying because he had been conflicting explanations of what was happening to him. I sat and wiped his tears, held his hand, and just listened to what he wanted to say. I sympathised with his discomfort over being nil by mouth with no indication of when his surgery was, he was so thirsty. An added stress was that I hadn’t been aware I was covering a different team for on call in the evening after 18:00. That evening was the first time I ever held the cardiac arrest bleep. Within two minutes of holding it, a cardiac arrest call was put out. Soon I was running across the hospital not sure what I was going to find (thankfully only syncope). I reviewed extremely sick patients. And just before I went home I reviewed a patient who was dying and in pain. 

I function well at life the majority of the time. I am the strong person at work and with friends. 

But what I want more that anything is if you ever know anyone who is diagnosed with thyroid cancer, I don’t want you to say what little you know about my story and then profess that “I’m fine now”.  The reality is that you don’t know either way, and therefore it is not your place to say. Regardless it is unlikely to make the person you know feel better. You probably just want to imply that I am alive, but unfortunately the fact I am alive will not affect the course or prognosis of that person you know - so it isn’t really reassurance at all. 

Equally I know how lucky I am to be alive. I know this because one of my most lovely cancer friends died in November. When I met her, her cancer had already spread across her body, I had no idea, she didn’t tell me. She was an amazing person. She was 26. 

Mega love to my cancer friends. You are incredible and I think of you all often.

It wasn’t my intention to make you uncomfortable by reading this. But occasionally it is good to speak the reality and the truth. 

[railid]

2 years

Today marks the two year anniversary of my first Cancer surgery.

There were some bizarre parts of the day including; arriving at a hospital I had been training at for two years except this time I was the patient, arguing with the consultant Anaesthetist as he was putting to sleep about how I loved PBL and how it was better than the lecture teaching format and then his look of horror when the sedation he gave me to calm me down send me into a fit of giggles as the speed of its effect going IV was apparently hilarious to me.

I can remember lying on the hospital bed waiting to be taken to theatre. It felt like an age to wait. Mum and Dad were sat with me and I was watching Bake off episodes on my iPad. Mum bought me a chick flick book but I was too nervous to concentrate and read it.

The last operation I’d had was when I was 4 and I was quite scared of “going under”, especially as my knowledge of surgical complications had increased substantially since then.

Other than my amusing altercation with the anaesthetist the falling asleep part was all too easy. It was the waking up when the horror began.

It was initially hazy, then the sheer pain and never having felt so cold both hit me like a wave. I must have been in recovery. At first the pain was so strong I couldn’t muster the strength to speak. I was shaking, my shivers were so violent. I think the recovery nurse must have put another thin hospital blanket over me which honestly did nothing. It felt like I had been cold for hours and I later wondered if they had forgotten to use the surgical hot air blankets to keep me warm during the operation. She just knew I was in pain and must have given me some more strong pain relief.

Next I was wheeled back to the ward but I by no means felt “recovered”. The pain was so severe, worse than I could have ever imagined. I felt as though someone had slit my throat with a large blade and then stabbed me a thousand times in my neck. To be fair, that is probably not that inaccurate of what actually happened. I couldn’t get comfortable, my neck and shoulders had seized up and I couldn’t move them at all.

When I first said hello to Mum I knew my voice was gone. I initially tried to pretend to myself the nerve to my vocal cords hadn’t been damaged and it was just because my throat was sore. But when the lady next to me who had had the same operation could speak completely normally I saw the distress in my Mum’s eyes. She kept saying try and speak Hannah, try and speak but my voice did not get any louder. That same damaged nerve also helped the mechanism of swallowing. After half an hour I could not swallow the few mls of liquid paracetamol I had been given. But at this point paracetamol really didn’t cut it. The nurse had to squirt the stronger stuff down the back of my throat because it wouldn’t get down any other way.

I couldn’t even swallow my own saliva without taking with it a great gulp of air, and at that point I was unable to burp it back up so it looked like I was vomiting air multiple times a minute. Which when you are exhausted and in pain and all you want to do is sleep then it became quite disruptive.

Let’s just say the drugs kicked in and I had quite a hilarious conversation with a middle aged lady who had just had a hysterectomy. And later on I was discharged home that evening (How that counts as a day case surgery I don’t know.). But not before the surgical nurse told me I would “be fine”. Despite the fact the consultant was so worried about me he came back at 6pm to check on me a second time to see if I had regained the ability to speak, as well as my discharge letter had said the surgery had been to remove a potentially malignant tumour. False reassurance is never ok, I understand so clearly why it is drilled into us to intensely at medical school.

And so began the tradition where Mum and Dad bought me takeaway nandos post surgery/treatment/horrible days. Mum had cut it up into tiny pieces and I was only allowed mash! The pain relief did help my ability to swallow as did not eating for 24hours even if my technique was poor. And I sat in my flat with Dad and watched Cinderella and pretended I was 5 again. Mum was in the kitchen doing the washing up, popping in occasionally to keep me medicated. I posted a status on Facebook. It showed that before I had even been officially diagnosed I had already gone into major protective mode of all those I cared about. “Thanks so much for the prayers and thoughts today :) feeling a lot better than I was earlier. Watching Disney’s Cinderella with Dad at, and already eaten a nandos!” I can translate that for you now: “I know people I love are reading this and they might be very worried about me. I cannot bear to make them worry any more than they already are so I am just gunna hide the pain and suffering and horror that today has been and only report the positives. Also the morphine is helping me see the bright side right now. Also I couldn’t believe I ate any food. I thought I may never be able to swallow ever again mere hours ago.” Now I look back at everything I know I am a pretty tough cookie. But that day marked the beginning of me being sick and I had so little understanding of what was going to happen to me over the subsequent months. I started my first attempt at final year of university 9 days later which I had to give up a couple of weeks after that. One thing I hope no Medic reading this (or anyone for that matter) will ever do is say to someone with Thyroid cancer that they are lucky.

[railid]

Near the End of Week 2

I stopped taking my hormones 13 days ago, and I still have 4 days left to go.

The first week I tolerated a lot better than I think I did the first time. I went to Cambridge and then London twice independently. I went to two Norwegian Evening classes for two hours, went and wandered round Cambridge town after speaking to a lovely lady at the Oasis centre at Addenbrooke’s Hospital.

Exercise in the first week was also good. I kept mobile everyday. I went swimming constantly for 45 minutes one day, went on quite a few walks starting off at around an hour to then to just wondering around the block. My function seemed to decline to much slower this time, it almost did not hit me until later in that first week. 

Meals also were easier this time as I was much more mentally prepared and had made a plan. The diet is a pain, and kinda makes you feel a bit trapped because you can’t go out and eat anywhere. Everything you eat has to be prepared at home from scratch. But as I said, it has been easier this time, and Mum has been incredible helping me. 

Day 6 was when it first really hit. I had a doctors appointment at 10.30 so I was up at 9am. After the appointment I went to Costa with Mum (had a weak earl grey tea with no milk - surprisingly nice) and then we went to Next to get some shirts for when I go back on placement. Then on to Tesco to get some more food for the diet and then home. Mother was expecting me to have had a nap before I headed into London, but somehow was quite awake enough to write the previous blog post. Suddenly I had to grab my Norwegian books and off I was on the train to London for a two hour class. I got home at around 9.30pm I had been active and out most of the day and I was majorly crashing.

It weird how a normal day’s activity can leave you totally shattered. That I guess was how I lost some of the belief that my body was working properly, at least temporarily. Unfortunately I have had to cancel meeting up with all the people I had planned to since then. Not because I didn’t want to, I just did not and do not feel up to it. 

Fatigue is a curious symptom. It comes on gradually, with tiredness bursting in on your day completely unpredictably. Now on day 13 it is there all the time, just more intensely some hours that it is others. The fog that is clouding my brain changes intensity as well. My concentration and memory recall is faltering and I now all I can do is just lie on the sofa and watch TV or movies. Exactly what I was hoping not to do, but sadly right now I have zero control over what is happening to my mind and body. 

Harry Potter movie watching and sewing (when I am able to concentrate enough) is what I would consider the most fun activity I can do currently. Friends is still making me laugh out loud, I would say I am still keeping positive, it is just a harder feat when your brain is mush. 

Yesterday I was too weak to slice my own bread. Every time I stand up my vision goes black and I feel like I am going to pass out. I have totally lost my appetite, and today I felt not only too tired to eat, I felt too exhausted to actually physically chew. This is back to what it was like the last time, As I said it isn’t fun. Just 4 days until I can start my hormones again. 

I cannot wait. 

[railid]

Introduction

The last time I did this low-iodine diet and came off thyroid hormone replacement for my main cancer treatment, I really struggled. Not only did I get horrible symptoms from my body essentially shutting down, but with my metabolism ground to a halt, I gained 1 stone of weight in 3 weeks when I was eating a normal amount of very healthy food. I was extremely tired all the time, so exercise also seemed out of the question. 

This time round however, I am hoping it will be a different story. I have become a lot more physically fit that I was 9 months ago. I have lost just over 1st 7, which I am feeling extremely positive about. Losing that first stone of weight you should never have put on in the first place was hard. I kept thinking, “Why should I have to work hard and restrict my eating when I had done nothing wrong to cause it in the first place? How was I going to be able to restart building back my fitness ability when I had been hardly able to get off a sofa for 6 months, including one month where my metabolism was turned off?” It all felt like a great injustice. 

When I eventually took the first baby steps to doing some light exercise, it really made little to no difference at all in terms of weight loss. Unfortunately having no endogenous production of thyroid hormone and taking the inactive form of thyroid hormone as replacement, meant that any weight loss was slowed and took twice as long that it normally would. I had no motivation, no positive reinforcement for me to carry on.  

After many meager attempts, and lots of yo-yoing on the scales, things took a turn in April. I went skiing with my family and lovely friend Caroline. I had been going to this same resort ever since I was 3 when I learnt to ski. I knew the place like the back of my hand, and skiing is probably more natural to me than riding a bike. It was on this trip I began to believe in my body again. Yes, I was tired, but by body was outside for that majority of the day being exercised, and by the end I was still standing and not left crumpled in a heap.

On my return, I had a new drive and motivation, and gradually my fitness began to steadily improve. I can still remember the day I did a full spin class pushing myself to the limit, without having to stop midway because I was convinced I was about to vomit. After that, I was hooked. The adrenaline and endorphins post exercise were addictive, as was the belief that my body was working properly again.

I am now starting this diet/loss of hormones again from a much more positive standing. Yes, soon my brain is going to descend into a cloudy fog and I probably will gain some weight I don’t deserve to, but I will not let it get me down. I am feeling so headstrong. I have done this before and got through it. I can do it again, even though it will be very unpleasant. The following are my tactics of how I am going cope, keep positive, and hopefully put on less weight this time:

Exercise. Yes I feel tired and I cannot do high intensity exercise that I love, but I can still keep active. I am going to try and do some physical activity every day for the next 2-3 weeks, however much I feel tired or don’t want to. I need to do some exercise to help reduce the amount of weight gain as well. Lounging around on a sofa all day watching TV and feeling sorry for myself is not going to happen this time!

Belief in my Body. This may sound ridiculous to you, but I think its highly important. If you believe your body is unable to do something, your mind will decide it can’t. This is also entwined with exercise. If I do exercise or light ‘activity’ whilst my body is progressively shutting down and I achieve that it promotes the belief that my body is still functioning, even at a diminished capacity. If I believe my body is still functioning, therefore I will keep active. A beautifully positive circle of thought and action.

The Diet. It make eating and preparing food tricky and quite a lot of extra hassle. I can still make it fun, and also see it as a slightly modified Slimming World diet! Also I need to keep my calorie intake as controlled as possible to prevent too much weight gain this time.

Distractions. If you are constantly thinking about how your body is progressively worsening, you just drive yourself into a miserable state. I have no intention of this happening, so instead I am going to ENJOY myself! I shall do this by continuing to do things which I love and having some fun. 

This is NOT a PUNISHMENT. In the final week the last time I did this, my brain felt like it had pretty much stopped working. My body had shut down. I felt like I was constantly about to vomit. Cancer treatment is rough, but is being done to help me even if at the time it is easy to believe you must have done something wrong. What have I done to deserve this? The truth is, no one going through cancer treatment deserves it. And I need to keep this at the front of my mind.