It's Alright PET

I went back to Oxford today for my follow up appointment - another 2.5 hour round trip :-(

Looking online, most people say PET scan results take at least a week, sometimes up to 4 weeks to come back. I am not sure I could have lasted that long. I feel very fortunate that the PET results are back already, as the waiting was sending me crazy. Lots of good news today! 

Firstly, they can’t see any other cancer in my body. I can’t tell you what a relief this is to hear. Secondly, the suspicious node still isn’t showing up as cancerous – phew! 

However, despite this, my team still think it’s likely to be cancer in the making, and think it needs to be treated as a precautionary measure. Bah! Based on this, I discussed the potential treatment options with my new consultant (a Head and Neck cancer specialist), and came away from the meeting feeling both confused and reassured at the same time. On the drive home, I couldn’t stop my mind from wondering why – out of 67 million people in the UK – I had to be one of only 450 people per year with tonsil cancer. Couldn’t I have just won EuroMillions instead?

 

Radioactive Ramblings

Today I am going for a PET CT scan. This will be my fourth scan. So far I have had an MRI, a CT scan with contrast dye, and ultrasound, and now this PET CT scan. Oh and I’ve also had a dental x-ray. The dental x-ray went really well. I needed one because radiation can make your teeth and jaw very brittle so they take out any teeth they think won't withstand the radiation. I was dreading this part - I just couldn't imagine being my age and having all my teeth removed, leaving a set of gums and false teeth. Thankfully he’s really pleased with my teeth. He thought the dentistry in my mouth was excellent and said it was like looking at a fine jewellery shop. It probably cost as much as some fine jewellery to get it that way so that cheered me up - money well spent over the years I suppose! I am so relieved I won’t need to have any teeth out before I have radiation and chemotherapy, if that’s the route I go down. 

The purpose of today’s PET CT scan is to try to ascertain whether the enlarged lymph node in my neck is cancerous or not. What we know so far:

 -        I have a 2.5 cm tumour behind my right tonsil

 -     This tumour is a HPV-positive squamous cell carcinoma

        -        I have a suspicious node in my neck

As I mentioned, tumours caused by HPV are highly treatable. This is obviously good news in spite of the negative news about having cancer to start with. We also know there is one enlarged lymph node in my neck. It is 9mm. This is bigger than a normal node but not as big as a cancerous lymph node. What they aren’t sure about is whether this is a cancerous lymph node in the making or just a swollen lymph node – what is known as a reactive node, because it’s next to the tumour. The PET CT scan usually happens a few months after treatment to check if the cancer has all gone or whether it might have returned. But it seems I am having one before treatment starts to see whether or not that node is cancerous. I am not even sure if it would really change the course of treatment if I’m honest but the doctor has recommended that I have one so off I go. 

The scan is very similar to a CT scan except they inject radioactive sugar into your blood one hour before the scan. Radioactive sugar reacts with cancer cells and makes them glow on a scan so that the doctor can see where the cancer spots in your body are. This all sounds pretty amazing to me, although I am not looking forward to yet another scan, nor being radioactive. I have images of Homer Simpson as Radioactive Man whizzing through my head as I drive to the scan - by myself, because afterwards I will be radioactive for about six hours and can’t go near people, especially small children and pregnant women. Thankfully Rich and the girls are away so I don’t have to worry about being radioactive near them, but sadly it does mean no hugging the pets until after 6pm today.

I felt fine after the scan, but yet again there is more waiting. Everyone says this is the hardest part and they are right. Although that said I don’t know yet what is to come so it may well not be right! The waiting is agonising because you don’t know what the future holds, and a PET scan holds the key to whether you have cancer in other parts of your body. I was scanned from head to pelvis, so I will soon know if the cancer has spread to other parts of my body. The problem with this is that you convince yourself that your body is riddled with every cancer imaginable and that when the results come back it will be all bad news. Thankfully I only have to wait one day for the results, so instead I am trying to focus on the positives - that I’ve got an early tumour contained in one place that is treatable - and as I go to bed I thank my lucky stars for that.

 

Scans scan and more scans

Back to the hospital today for a full afternoon of tests and scans. I started by seeing my lovely neighbour/ENT consultant to discuss what we knew so far. I love this about him – he basically says ‘I’m going to tell you everything I know’ – and it reassures me that he’s not hiding anything from me. Not that he would, but cancer does make you very paranoid. 

I then went for a dental x-ray to check my teeth will be able to withstand radiation, as one of the side-effects is that the jaw bone becomes weak and crumbly. Next, it was off for a CT scan with contrast dye. This was an interesting experience. Quite similar to the MRI, but shaped more like a doughnut than a tunnel, and I had to have some dye injected into my arm beforehand to help the images show up on the scan. This has the effect of putting a metallic taste in your mouth, but more bizarrely it also makes you feel like you have wet yourself. I was warned about this beforehand, so I asked the lady how I would know if I had actually been to the loo on the scanner, rather than just feeling like I had. She assured me I would just know – and it turns out she was correct. It’s a very strange feeling indeed, but it’s a welcome distraction from the needle in your arm and the whizzing and whirring of the machine.

After the CT scan, I went to the ultrasound department, where a somewhat flustered consultant flew in the door, scanned my neck, said he couldn’t see anything untoward and therefore he wasn’t doing the fine needle aspiration (biopsy) that he was meant to do on the suspicious lymph node. I took this to mean there definitely was no cancer in my neck – hooray. After that mammoth day of being poked, prodded and told to lie still for 40 minutes on cold, hard metal sheets, it was home time. Phew.

 

The HPV Connection

Today I have been waiting for the results of the biopsy. When I finally got the phone call, it was simply to confirm that it is cancer - no surprise there. The good news, I’m told, is that it is early stage and treatable, even curable (I’m not entirely sure what the difference is). I also learned it is HPV positive, which means it responds well to treatment, or at least better than a non-HPV tumour.  

HPV is human papillomavirus - a type of virus that infects the skin and cells lining the inside of the body. There are hundreds of different types of HPV with some ‘high risk’ types that can cause cancer. Cervical cancer is the main type of cancer linked to HPV.

It is estimated that around 8 out of 10 people will be infected with HPV at some point in their lives. For most people, the infection will get better on its own and they will never know they had it. Thankfully the HPV vaccine is now available to help prevent cancer by protecting against HPV. This means that HPV cancers should be almost completely eradicated in the future.

Sadly for my generation, there was no vaccine available, so here I am. But, it seems that having HPV cancer is relatively 'good' news, if indeed there is such a thing when it comes to having cancer. The bad news is that the treatment for throat cancer is one of the most brutal cancer treatments, because it impacts your ability to eat and drink, which obviously we need to continue to do to stay alive – not to mention is the core of our social lives - so I sense a challenging time ahead.

As well as the 2.5cm tumour (stage 2), the MRI also showed an enlarged lymph node in my neck, close to the tumour, so they are concerned this may mean one of the nodes is also cancerous. More tests and scans coming up to find out more. I have also now been referred formally to the Head and Neck cancer team at the Churchill Hospital in Oxford, as my nearest hospital doesn’t offer this specialist service, so it's a 2.5 hour round trip for every hospital appointment.

White Rabbit

It has now been one week since I first heard the mention of the C word. In hindsight, I would say I had known for a while by this stage. I knew when I asked my dentist to look at my tonsil and I could tell by her reaction that this wasn’t going away on its own. I knew when the consultant said he was ‘a little worried’ about the tumour. I knew when Dr Google revealed that asymmetrical tonsils are almost always cancer (word of warning: Dr Google is not generally a reliable source of medical information, and I was fully aware of this, but who can resist the lure of self-diagnosis?!).

The funny thing is, I haven’t yet been formally diagnosed with cancer. No one has taken me to a room, sat me down and told me, yet I know I have cancer. It’s funny how quickly you get used to the word. And how that word would have once filled me with terror, but when you know that’s what you’re dealing with, you change gears and move into a different universe. It becomes not about the word itself anymore. You know you have cancer – okay, got that part. But there are so many types and stages and grades, so many different prognoses, so it becomes about the extent of it and all of the million meanings – and emotions - within it. Any cancer sufferer or survivor will tell you that the stages, grades, types - all of those things, huge entities within themselves, lie underneath the word cancer. And that is what keeps you awake at night, wondering what will happen, how bad is it, will you live to see next year, how are you going to tell your kids, what if it comes back…and all of the agonising things that go through your mind 24/7 so that sleeping and eating and just existing become things that have to be worked on, because they no longer come naturally.

The waiting is debilitating. It takes all your energy. It takes over your life. I’m at home with two children who I haven’t yet told yet because I’m waiting to know what the prognosis is and what my treatment plan looks like, so I can at least tell them what we know with certainty. Telling your child ‘Mummy has cancer’ is brutal. I wouldn’t wish that on my worst enemy. There is no ‘good’ way to be able to tell them. But if you can say it with some conviction about what type/stage etc. then it can be easier, because children like facts. But we are not there yet – we still don’t know enough about my cancer to be able to tell the children. I am finding it so hard to hold it together in front of them. Having cancer is bad enough, but having to keep it a secret in my own house and dance about the kitchen smiling and laughing and pretending everything is okay is just torture.

Maybe it’s a positive thing that I am not able to wallow in self-pity. If I allow myself to go down that rabbit hole, I fear I may never re-emerge, unless the White Rabbit could give me a ‘drink me’ bottle to make everything better. Preferably full of Dom Perignon. The inevitable question everyone must ask when they are told they have cancer is ‘why me?’ Why does this have to happen to me? I have just got through the hardest year of my entire life, and now this new ‘gift’ has come my way. Talk about kicking a dog while it’s down (isn’t that a horrible saying?!). Apparently only 450 people in the UK are diagnosed tonsil cancer each year. I think my chances of winning the lottery are higher. How different life could be if I had won the actual lottery rather than the cancer lottery. But I keep going, the girls oblivious, Rich busy at work, and I try to act as normally as possible. One thing I know for sure is that I will do everything to fight this. I will fight it with every ounce of my being. And I know I need to take it one day at a time, which is not easy for a control-freak planner extraordinaire like me. So perhaps I also need a personality transplant while I am getting through this - or a trip to Wonderland.

 

Friday 13th - of course

Yes it was Friday 13th – and that just about summed up this day. Funnily enough, I was more dreading the MRI than anything else, as I am hopeless at lying still and I get a bit claustrophobic in the ‘tunnel of doom.’ But it seems MRI machines are more modern these days and it wasn’t actually as bad as I had remembered. I mean, it wasn’t a barrel of laughs, and I had to dig very deep to be able to lie still for that length of time, but equally I got through it without having a nervous breakdown. I tried making up my own version of Wordle – pick a 5-letter word and then whatever it ends in, think of a new 5-letter word beginning with that letter, and so on. I got through about 15 minutes doing this, after which I completely ran out of 5-letter words, had a numb bottom and just wanted to get out of the tunnel.

The fun didn’t stop there though – straight after the MRI it was biopsy time, which was even less of a riot. I had a dental numbing injection, and then my lovely neighbour proceeded to clip and slice bits of my right tonsil. I was fully aware of all of this, even though I couldn’t actually feel a thing, but my mind went into overdrive, imagining the scene in the room with blood spurting everywhere and that was enough to tip me over the edge – I went a funny shade of green/grey/white, couldn’t feel my hands at all and had to have the window open and water brought as I desperately tried to regain my composure. 

I kept apologising profusely – after all, this was my lovely neighbour who I had only just met, and here I was wasting his precious time passing out on a chair in his clinic – but to be honest I couldn’t do anything about it except let nature take its course. When I started to regain my colour a little, he said that would do and we would finish there. I stupidly replied to ask if he was sure he had everything he needed, as I absolutely did not want to go through this again, to which he replied ‘oh go on then, a bit more would be good’. So he took a little more of the offending tumour out, and I immediately regretted offering at all. 

When we were finished, I asked my neighbour if he knew it was cancer he said pretty much yes. I went home that evening, with the girls home from school, and felt completely numb - even though I had known since the dentist visit really. We didn't want to tell the girls anything at this stage, as we didn't have anything certain to tell them and you really only want to give your children facts to deal with when you are telling them Mum has a potentially life-threatening illness. As we didn’t even know it was definitely cancer, we decided not to tell them anything except that I had been to have the pesky tonsil looked at. But that meant that despite being told it’s almost certainly cancer, I couldn’t break down and cry. So I just went home and went into autopilot, because I had no choice.

Birthday Wish

I had had one hope for 2022, and that was to enjoy my birthday this year, given the previous two birthdays had been extremely difficult, to say the least. And lucky me – I managed to have a lovely birthday, with lovely weather, but sadly the whole time I had the question of cancer lurking in the back of my mind (and my throat). A friend and I sat in a bubbling hot tub at a gorgeous spa hotel, talking about the tonsil, and I couldn’t shake off the worry of what was about to happen if / when cancer was confirmed, and how my life was about to be turned completely upside down.

10 days after my birthday, I finally had my ENT appointment. My ENT consultant turned out to be my neighbour, who I had never met before despite the fact we live on the same street. He told me he was very concerned about the tonsil and mentioned the word tumour. Again, cancer wasn’t expressly mentioned, but he was worried. Very worried. He booked me in for an MRI scan 3 days later, as well as a biopsy and blood tests. I am very grateful to him for pushing everything through so quickly for me. I went home with my head spinning.