Down with a bump

We are back from holiday, had an absolutely fantastic time and I have had to come down to earth with possibly the biggest bump I have ever experienced – radiotherapy starts tomorrow. I have been in a merry state of denial for the past week, helped of course by the delicious rosé by the pool every lunchtime. We met some lovely people; missed the wonderful friends we met there last year and we promised we will return next summer. It is rapidly becoming my happy place.

First session is tomorrow at 10.30am. Off to bed but not expecting to sleep a wink. It’s like Christmas excitement in complete reverse. I am dreading it.

Counting down till D-day

I haven’t written here for a while. I have been recovering well, and have been spending some lovely time with my girls over the summer holidays. After 20 years of working every summer apart from those I was on mat leave for (and one I took parental leave), it is really nice to be able to enjoy the full summer with them for a change. Nice, but also exhausting as we have been doing mostly non-stop activities - I don’t think I have ever shopped as much as I have this summer! Add in recovering from major surgery and re-learning to eat and drink, and I am feeling quite tired.

It doesn’t really feel like a physical tiredness as much as a mental overload. Even though it has now been 3 months since diagnosis, I am still processing the fact I have cancer - or hopefully this is now past tense as I write this. I listened to a really interesting ‘You, Me and the Big C’ podcast recently, where a guest speaker joined who was a breast cancer specialist doctor, who had also had breast cancer herself. And not just once, but she has also had a recurrence. What she said really resonated with me - that it doesn’t matter what your statistics are, the mental anxiety about recurrence is the same whether you have a 10% chance or recurrence or a 90% chance of recurrence. It either comes back or it doesn’t, but you will never know if it will come back until it does, or until you die a different way. Sobering words that really struck a chord with me.

My odds in theory are really good, yet I am terrified of being in the recurrence bucket (as are all cancer ‘survivors’) especially as head and neck recurrence is so hard to treat a second time. I have to remind myself this is why I am opting for the adjuvant radiotherapy. But no matter how much I tell myself it’s the right thing to do, to increase my chance of long-term survival by making sure we ‘mop up’ any microscopic cancer cells that may still be lurking in my throat, I still worry that I’m making the wrong decision and that it would be better to ‘watch and wait’. Because radiotherapy brings with it its own risk of causing another primary cancer (usually a sarcoma) around 15 years after treatment, not to mention all of the awful side effects, again, more pronounced for head and neck cancer because of the location of the x-rays.

As I mentioned, most of the side effects are common, so it is highly likely I will experience some or all of them. Most people do. I’ve been told to try to gain some weight before treatment starts so that I have more to lose when it gets to the point that I can’t eat - creating a buffer so to speak. It’s not often in life you are told to gain weight so I should be happy about it, but like any of the positives of cancer, it doesn’t really feel like a positive. I feel more like a turkey being fattened up for Christmas or a goose ready to be made into Foie Gras.

My mouth is already very dry after surgery, and something has happened to my taste, in that everything is slightly less tasty than it was before surgery. This isn’t a great starting point as radiotherapy will exacerbate both issues, but my surgeon isn’t concerned and told me to suck sherbets lemons! How very scientific!

With one week to go, and to make the absolute most of it, I am flying out to Portugal with the girls for 5 days of sunshine, good food and wine. I had booked this trip back in March, before my diagnosis, and I didn’t think we would be able to go given my treatment schedule (I was meant to start on 29^th but that turned out to be a bank holiday so it was moved to 31^st), so I feel very fortunate to have the opportunity to go after all. Maybe somewhere there is a guardian angel looking down on me - and realising quite how bad the past 1.5 years have been.

The Portugal trip feels like the Last Supper all over again (see pre-surgery post), and I have an ominous feeling in the back of my mind about what’s to come very soon, but I am trying my best to push it aside so I can enjoy this time. I will of course be taking sherbet lemons on the flight!

The Mask (no, not Jim Carrey)

Today was the inaugural mask fitting ceremony. Okay let’s face it (possible pun there - sorry) there was no ceremony. It was just a standard Monday afternoon, after an exhausting but brilliant weekend of 12th birthday celebrations and a sleepover of 8 girls in the loft, spent lying on a hard metal table with a cannula in my arm to inject contrast dye, which makes you feel like you are simultaneously wetting yourself and eating metal, having a sheet of melted mesh thermoplastic placed over my head and shoulders and moulded to my shape then bolted to the table with 8 big black bolts until the mesh has set solidly, then popped into a CT scanner for a few rays and then sent on my merry way - see you in 3 weeks darling! 

I have to wear a mask for each of my 30 radiotherapy sessions. That’s every day, Mon-Fri, for 6 weeks. And it’s a 2.5 hour round trip each day in the car. The purpose of the mask is to make sure I stay completely still and can’t move. Once moulded, it sets into a very hard plastic. As you can imagine, it is not pleasant - it’s very tight fitting so I can’t move at all (I know, that’s the idea, but still not nice) although I do have a hole for my eyes, nose and mouth, which I wasn’t expecting as most masks I’ve seen online don’t have this. I do feel fortunate in that regard. The mask has points on it to ensure the beams land in exactly the right place. I feel more reassured by this than I did by the arrow that was drawn on my neck with a felt tip pen right before surgery!

Being bolted to a cold metal table is unpleasant at best, terrifying at worst, and I have to try to train my mind not to think about it while I’m in the mask bolted to the metal table. It’s a bit like the tunnel of doom (otherwise known as an MRI), if you allow your mind to go to the place of fear, you will panic and it’s downhill from there, so you have to try to focus your mind. Easier said than done, but I have been practicing breathing exercises to get me through it so I’m hoping I can employ those when needed. So that’s the fitting done. I now have 3 weeks to try to enjoy the rest of the summer. I’m hoping to eat a lot, sleep a lot and spend some lovely time with my little ladies. Oh and squeeze in a last trip to Portugal! 

And relax...

We have just got back from a lovely holiday in Corsica. I was so apprehensive before we left as to whether I would be able to go or, if I was well enough to go, whether I would be able to enjoy myself (i.e. eat, drink, relax without pain). The good news was that I did manage it, and I did enjoy myself. We hired a gorgeous villa in Pinarella for a week and then went to Bonifacio for a few days. I didn't do a great deal other than sleep as much as possible and lie by the pool reading books. In hindsight, I am really glad I pushed myself and went, as it was far more relaxing than being at home, emptying dishwashers, sorting meals, doing things with the girls. This way, they were happy in the pool with their cousin and I was happy not having to do very much. We went with my brother, sister-in-law and niece, who probably thought I was channeling my inner sloth tendencies (I kind of was) but they still managed to get out and do lots of activities too, so hopefully everyone was happy. 

And I found champagne went down rather easily - cheers to that!

Intermediate risk

I am still very much struggling to make a decision about whether to have the adjuvant radiotherapy. There are so many reasons not to have it, but also some very important ones in favour of it. I went to see my oncologist today to go through my pathology report in detail with her, hoping it would help me make my decision. We went over the tumour size, the margins, and the neck nodes. The report showed that I didn’t have any perineural or vascular invasion. All of these factors are in my favour. I asked her what she would advise if she were treating a member of her family. She said they weren’t allowed to advise on that basis, but what she could do was take me through which group I would fall into in a trial that is currently being run internationally. 

The PATHOS trial is looking at less intensive treatment after surgery for hpv-positive oropharyngeal cancer. It is supported by Cancer Research UK. It is part of a move towards trying to reduce the intensity of treatment for HPV-positive head and neck cancers to reduce the chance of side effects. To date, no one has collected data in the right way after surgery to be able to know whether or not this is the best thing to do, so PATHOS is looking to do this so that we know for sure that side effects can be reduced without reducing the chance of curing the tumour. The outcome of this trial will obviously be far too late to help me, but it’s great to know something is being done to try to minimise the radiotherapy side effects, because they do sound horrific. 

Back to my own situation, because my tumour was stage 2, it meant the margins were close (clean but close). Were I participating in the trial, I would be classed as ‘intermediate risk’ and would be given adjuvant radiotherapy. This sealed the deal in my mind. Had I been low risk, I would have declined the radiotherapy, but intermediate feels too risky. The radiotherapy decreases the chance of recurrence by up 10% making my chance of it coming back even smaller, so I am going to go for it.

Yikes.

Radiation Side Effects

I have spent the last week looking at the pros and cons of the options in front of me. On the one hand, ‘watch and wait’ is highly appealing because it means no further treatment at this stage, I can get on with my recovery from surgery and I would be closely monitored for any future recurrence. It also means if I were unfortunate enough to have a recurrence, I could have chemoradiation at that point, because you can only have radiation to the same area once.

On the other hand, ‘watch and wait’ means constantly looking over my shoulder, worrying about the cancer coming back, and – and most importantly – it means the risk of recurrence is around 10% higher than if I have radiation. My oncologist tells me all cancers are best treated fully the first time around, because a recurrence could be anywhere and any stage, so better to throw everything at it now and make sure it doesn’t come back. She’s an oncologist so of course she would say that, but I have lost enough dear friends to cancer at a far-too-young age to take the risk. My surgeon is more relaxed and thinks 'watch and wait' could work just as well given my situation, but I have to say the thought of having to deal with this all over again in the future means I am currently erring toward the radiation, albeit very reluctantly.

The challenge with radiation for head and neck cancer is the debilitating side effects that come with it. I have been told this is a curable cancer but the treatment is one of the most brutal. Some of the side effects include:

-          Tiredness and feeling weak

-          Feeling or being sick

-          Skin burns

-          Sore mouth, throat and ulcers

-          Dry mouth (radiation destroys saliva glands)

-          Loss of taste/smell (radiation destroys taste buds)

-          Difficulty opening your mouth

-          Difficulty swallowing (many people have a stomach feeding tube) – can be permanent

-          Hoarse voice

-          Hair loss (to affected area)

-          Jawbone damage

In addition, there are also many late side-effects that can happen months or years after treatment and can last for many years, sometimes permanently. All of this, and there is absolutely no certainty that there are currently any cancer cells left after the surgery, so we could, in fact, be radiating nothing but healthy cells. 

With all of these wondrous ailments on offer, who in their right mind would opt to have this? The alternative of course, is cancer, so I guess I might opt for it. Of course, not everyone will have all of these side effects, but the majority of people do. It definitely feels like I would be coming out of the frying pan and into the fire.

What has cheered me up no end this week has been the amazing cards, messages and gifts I have been sent by my wonderful friends and family, near and far. I have had many beautiful bouquets and some incredibly thoughtful care packages which have brought a smile to my face at an otherwise difficult time. A huge thank you lovely people, you know who you are!

My eating is getting gradually better. Once past the 2-week mark, things started to improve significantly and I am now managing to at least attempt most foods. Liquids still come out of my nose if I don’t swallow with my head back, and I’ve learned this includes ice cream. I have discovered my new favourite ice cream – Haagen Dazs Speculoos, which is basically lotus biscuit with cream and caramel. Absolutely delicious, but we can only buy it in small tubs as part of a multi pack. I may write to Haagen Dazs and ask them to consider making full-size tubs for the UK market. Also wondering if I have too much time on my hands perhaps?!

Recovery rollercoaster

Things felt like they were getting worse again on Sunday, and on Sunday night I was given Oxycodone again to try to help with the pain. This was not a good move, as I spent all of Monday feeling nauseous. I will need to try to avoid opioids in future as I don’t seem to get the wonderful feeling everyone raves about, but I do get all of the nausea and other negative side effects.  

However, the good news is that I was released from hospital on Monday. I had the drain out on Monday morning, which was, let’s say, an interesting experience. The feeling of something popping out of your insides while you are fully conscious is not one I would care to repeat too often (let’s hope never again!). But it was my ticket out of the hospital, which was all that mattered, because by that stage I was really struggling to sleep at all, the food was making me feel sick and I was bored to tears. I came home on Monday afternoon. I was so happy to be home, in my own bed, surrounded by my favourite people and pets, and because I had felt reasonably okay in hospital, I assumed things would just continue to improve when I got home. I couldn’t have been more wrong. 

I woke on Tuesday morning feeling absolutely awful. The pain was so intense, I thought the drain site must have gotten infected because it was radiating all through my neck and teeth and throat. I couldn’t even drink Ensures, or even milk because it stuck in my throat and I felt like I couldn’t breathe. My voice also changed and became very nasal. Something was definitely not right. I called the Macmillan team, who asked me to send a photo of my neck. I was all ready to be readmitted for infection, but they just said it looked normal and that having that much pain was also normal, but to call my GP to review my meds. I got straight on the phone to the surgery, had some new meds prescribed and started a new routine of painkillers. I also tried to continue eating some of the foods I had managed in hospital, but realised very quickly that even those were no longer possible. I just ended up choking with any liquid streaming out of my nose. It was as though my throat was obstructed – and it probably was with the swollen tissue. I managed to eat next to nothing on Tuesday, which started to worry me as well as the team, and they told me to come back in on Thurs for the MDT meeting even if my pathology results weren’t back by then, just so they could review me. They also talked about possible readmission to have the NG tube put back in, the thought of which absolutely terrified me.

On Tuesday, I felt like the pain would never end. I had to re-do my med schedule to make sure there wasn’t a minute that wasn’t covered – pre-empting the pain if you like. To be fair, my consultant had warned me it would get worse before it got better and he really wasn’t wrong. Sunday, Monday and Tuesday were awful and the only way through it was to take it minute by minute, hour by hour and day by day. The downside of this approach is that time passes so painfully slowly. The big irony of this surgery is that taking meds is also a huge challenge in itself – you need the meds to ease the pain, but to take the meds you have to be able to swallow. I can have the soluble or liquid versions of the meds but I find these even more frustrating as it takes about 20 minutes to swallow a cup of liquid, whereas tablets are instant, and who has 20 minutes to spare to sip meds at 3am??

 When I woke up on Weds morning, the pain felt slightly less intense, and I was feeling quite determined, despite the pain. My new friend told me she had been told to try toast, so I decided to tackle toast again and succeeded (woo hoo!), which was a really big deal, as it took about 2 hours and I had to wash every single mouthful down with lukewarm, milky tea. I also managed a yoghurt and a Calippo. These are my new best friends! For dinner I decided to be super brave and try a cheese soufflé – I can’t even begin to tell you how amazing it was to eat that. I didn’t manage the harder outside parts but I was very pleased with the soft cheesy middle as a start.

Buoyed by my soufflé success, on Thursday I made some scrambled eggs with butter and double cream, had another soufflé  and more toast. I was NOT going back for that tube.

On Thursday afternoon it was back in the car for the follow-up MDT meeting. I wasn’t expecting to see my consultant because the purpose of the meeting had been for the dietician and speech therapist to check in with me following my pleas for help on Tuesday, but my consultant was there as well with some good news on the pathology results. The equivocal lymph node in my neck that everyone was unsure about - but were also convinced it was very likely to be cancer - WAS NOT CANCER! This was amazing news. He also managed to remove the tumour (26mm) and 3mm margins so he was pretty happy that it was all gone. The hard part now is that I have another impossible decision to make – I can choose to stop here and ‘watch and wait’ so to speak, with regular monitoring to see if the cancer returns, and if it does, we can then do chemoradiation. OR I can have a targeted dose of radiation only (no chemo needed) to make sure it has all completely gone. Rather like spraying Dettol on a surface after you’ve cleaned the dirt off, the idea is to kill any remaining microscopic cancer cells that may remain. This is a mammoth decision and not one I can make straight away so I’m going to do some research and think very carefully about this one as it’s a life changing decision whichever option I choose. But great news from the pathology either way. It’s a shame the tumour had grown to the size it was, because over 2cm makes it a stage 2 which is why the radiation might be a good option. Less than 2cm is stage 1 and generally wouldn’t need radiation if it’s not in the lymph nodes.

Other than that, I’ve been a bit slow on the Netflix front as I have pretty much spent the week on the sofa watching Wimbledon eating ice cream– a rare treat at a time when positives can be hard to come by.