The future is looking bright

‘Jen, you’re my last patient so you’re going to have to wait a bit.’ Said Deepti as she took in another patient.

I smiled. That’s fine, obviously. To be honest I was just really happy to know it was her I would be seeing.

‘Don’t worry, it’s all good’ she said with a thumbs up.

I breathed out heavily with a smile. I was waiting for the results of my first MRI post surgery. I know the surgeons were optimistic they’d got it all out but my meeting with my Oncologist on Monday had put a bit of doubt in my mind.

Did this comment mean the results were good? I would have to wait a bit longer to know for sure but I took it to mean all was well.

I wasn’t really *worrying*, I generally don’t worry until there’s actually something to worry about. But hearing these words, I did breathe a sigh of relief. A sigh of relief that felt like I had been holding my breath for days.

Some of my fellow cancer friends speak of ‘scanxiety’. They worry before the scan, during the scan, and then spend the time waiting for results, worrying that the worst will eventuate. I kinda get it… You want to be realistic. There’s a chance things are bad, prepare yourself for it. But I don’t think like this, in terms of worry. Sure, I have a quick acknowledge that there’s no guarantee the results will be good, but I wait until I know they’re not to start worrying about it. And even then my worry manifests as ‘ok well… What do I do now?’

No crippling panic, just a need to know the game plan.

But this time there was no need for a game plan. The news was good. The scan results had come back clear. This was no shock to Deepti, who had been confident all along. And I was confident in her. In my surgeons. That’s not to say there aren’t instances when it’s not entirely successful, I’m sure – they’re incredible, but some things just can’t be done. But they had thought at the time that they got the whole tumour out, so that’s what I was going on.

And indeed it’s looking like they have!

I’ve said it before, but Deepti is a truly amazing human. The amount of excitement and happiness and damnit, love! I feel when I see her is a testament to how great she is and how important her role is in the team. Her manner, her honesty, the way she truly cares… I’m already looking forward to seeing her again in 3 months.

Hell, 3 months!!! That’s just insanity!! It wasn’t long ago I was seeing them every day, and now I’m on my own for 3 months!! It’s pretty exciting really.

I also dropped in today to see Kat the physio, absolutely always a pleasure to see her. I unintentionally also visited my friend who I wrote about a few days ago – I only intended on dropping off a card but I ended up seeing him. I was actually really heartened by seeing him. I’m smiling now as I think of it. He still got a way to go but my goodness will he make it. I think back now to those days where it felt like it would actually never end. But that’s the important part… Think back. I still marvel at the fact that I’m 10 weeks post second surgery. I survived it. And he will too.

Anyway, it is well past my bedtime. The Moët I drank tonight in celebration was more delicious than I remember Moët to be. That’s the taste of hope, excitement, relief and victory. And the support I’ve received from people following this news has lifted me up so high. I love you all.

The dreaded MRI. Again.

So as part of my ongoing monitoring, I have to have an MRI. Every two months.

If you’ve been following along, you might remember that I enjoyed my first two MRIs but then managed to develop a crippling anxiety on my third. So two-monthly MRIs are not high on my list of things I want to do.

I emailed my CNS (Clinical Nurse Specialist) and told her I was a bit worried about getting through the MRI and wondering what my options were. She said she would write me a prescription for Lorazepam and that it would be waiting in the pharmacy for me to pick up before my MRI. Brilliant. Half a tablet 20 mins before, another half later if necessary. I considered just taking a whole one but I was going out after for my friend’s birthday and didn’t want to over-drug myself unnecessarily. I had no idea how it would effect me so thought I should err on the side of caution.

I was in at the Macmillan centre early as I wasn’t sure if I would need to wait for the prescription. I didn’t need to wait in the end so I headed over to The Living Room to get a cup of tea. I was sitting there drinking my tea when one of the Macmillan peeps came over to just ask if I needed anything. I explained I was just killing time before my terrifying MRI.

We had a bit of a chat about the MRI and she gave me some good tips and said to ask to listen to music. I didn’t even know this was a possibility, it had never been an option before. But I hadn’t had an MRI in the Macmillan centre before. I introduced her to Clarence who I had taken along in the hope I could take him in with me. It was just nice to chat to someone about it and she helped me feel calm. So thank you!

I then made my way down to the bottom floor for the dreaded MRI. While I was waiting I popped half a Lorazepam under my tongue as advised. Breathe in, breathe out. I’m calm.

Before long it was my turn. I put my things in a locker (two lockers actually… I had a pot plant in my bag… Totally normal) and went to get a needle shoved in my arm. Aargh the dreaded cannula! ‘My veins are difficult…’ I tell her as I grit my teeth and clutch the chair with my other hand. Thankfully she got in first time! Yeah the cannula hurt in my vein but it was in! This of course brought about the following conversation I have had so many times:

Her: it hurts? It shouldn’t hurt… Let me just check it’s placed properly…

Me: oh I’m sure it is, this is normal.

Her: well it seems to be in your vein fine, but… It shouldn’t hurt…

Me: don’t worry, I’m used to it.

LOL.

So that was good. I clutched Clarence to my chest and in we went. I warned them I was problematic last time but wasn’t sure how I would go this time. But I had Clarence to hold and a sleep mask to put over my eyes.

The Imager (Imager? Radiographer? MRI-er? Lady-who-does-the-MRI?) came out too and they got me ready to go in. They told me that this machine was one of the more roomy ones and that THEY COULD PLAY MUSIC THROUGH THE HEADPHONES! Dream. Yes please. What kind of music did I want? Pop music? Um… Yeah sure.

I got on the tray, put my sleep mask on, clutched Clarence and they put me in. I was feeling fine until I got all the way in, then the panic set in and I had to get out. As quickly as I went in, I was out again. Hyperventilating, panicking, I couldn’t face the thought of being in there.

I lay there for a bit, trying to control my breathing. ‘Maybe it would be better if you could see the mirror in front of you so you could see us in the room?’ I took my mask off for a minute and looked at it. The tiny periscope making me feel immediately trapped even though I was out of the machine and I panicked again. They took the cage off my face for a bit.

We talked a bit. The lady who did the cannula said ‘you’ve already done the easy bit, you’ve already been in there!’ If that were the easy bit then it would be fine! It’s the staying in there for 20 mins that was the hard part!

Actually it turned out that this MRI is quite a quick one. Only 15mins. That’s good.

‘Where is your favourite place in the world?’ The Imager asked.

‘Ummm… I don’t know…’ I answered stupidly. I mean it was the correct answer, I don’t know! But it wasn’t helpful here.

‘Mykonos’ I answered finally.

She smiled. She told me to think of the winding streets, of the white buildings. Of wandering down to the far end of the town and winding back along the waterfront. She painted a fantastic picture and I was immediately transported. I get it. Visualisation. I know this technique. But though I know this technique, I’m not sure I could have transported myself there on my own. Having this chat with her grounded me, pulled me back, took my mind off the task at hand. We discussed the sunset over the windmills and I thought about all the restaurants and bars that line the shore.

By the time they put me back in, I was in holiday (and maybe by then the Lorazepam was kicking in). I put my mask back on and they moved me back into the machine very slowly (this helped), the music was already going so I could distract myself easily, and a gentle touch on my hand as I went in made me feel supported and not too far away.

Immediately I was lying on a beach. I could even feel the warmth of the sun on my face. The pop music playing in the club behind me. And from then on I was calm. I was fine. Over the speakers I was kept updated on how long for each scan – ‘just 1 min 20 for this one Jen’. Ok cool.

My guilty pleasure song came on (dynamite by Taio Cruz) and I pictured myself at a beach party with my friend Ange as the sun set. I had to remind myself to stay still and not dance to the music. At this point I was actually smiling!

And then it was over. Easy. Having that chat with the girls (and probably the Lorazepam) got me through it.

The Imager told me that she’s made note on my file to always scan me in that machine – the slightly bigger one that allows music, and to make sure there’s extra time for me if I need it, so I’m not rushed. What a saint. We had a chat after about holidays and she said she’s getting married in the South of France in a couple of weeks! So I hope she has the most amazing time and the weather is perfect!

She honestly saved me. I am forever grateful for her patience, amazing helpful attitude and beautiful smile!

Her parting words to me were a reminder to ask for help when I need it. Specifically, in relation to asking my friends to come with me to the MRI, but also just in general. I’ve been told this once before in a particularly memorable way. It’s true, I probably should. I just like to try and get through things on my own and not bother people. But she’s right. And I appreciated the reminder.

‘So… What’s the prognosis?’

It’s a thing people ask. Like ‘are you going to live or die?’ Like people are watching tv show and want to know the ending.

It’s funny to think of your own life in that way… Two sides of a precarious scale.

Well… we don’t know the ending. There’s no blood test to see if it’s gone. The pathology report is not as good as they might have hoped, but they’re optimistic they got it all out. They like to get a 5mm margin around the tumour but in places they only got 2mm. They are worried it might still be hiding under my cheek, which is common enough if the tumour is in the margins. So now it’s ongoing scans to see if anything shows up. If it does, then it’s back to surgery to see what can be done. I love how nonchalantly my Oncologist speaks about this. ‘If there’s some in your cheek they’ll just have to go in and cut it out’. Oh just that. Maybe I would lose just my cheek, skin, maybe an eye? It’s funny how quickly you can forget all the good a surgeon has done if there is a big ‘bad’ involved. Sometimes ‘but the main thing is that we got the cancer out’ is of little consolation.

I’m reminded of a Neil Finn lyric here… ‘You do what you can to survive…’

I’m hoping I’ll get the results of my first post-surgery scan on Friday. I’m hoping it’ll be miraculously clear and I can go two more months without wondering if I have to go back into surgery asap.

So how do we know if it’s gone? We wait 5 years and see if I’m still alive.

I took a break from blogging for a while, you may have noticed. I took a break from Twitter too, only replying to things and checking on friends. I needed a break from constant reminders of cancer and struggles and… well… Death. I needed to try to be ‘normal’ for a time.

And I’m (hopefully) lucky enough to be able to give it up, while friends are falling deeper in.

My goal is to leave the cancer club. How do I feel about that? Excited, hopeful, desperate, purposeful, righteous, guilty.

My dear friend Amy wanted us all to do something. It was her dying wish. Well, anything I can do, I will. Any way I can help other people going through something similar, any opportunities to assist. While also trying to get back to being ‘normal’ and not having my life encompassed by cancer. I know that’s hard though, everyone speaks of a ‘new normal’ – getting used to a new life that isn’t as spritely or carefree as their previous. Well I don’t want a new normal. I’m determined to try and still live my life as I did, though perhaps with a slight new perspective.

It does make you think for a moment about what’s important in life. But only on a small scale. I’m not ready to quit my job and travel the world… A girl’s gotta eat. And pay for champagne, obvi. Priorities on point.

So send your love…

Additional to the ongoing things I’m having to deal with that I mentioned in my previous post, is the itching.

When I came out of surgery, pretty much my whole face was numb. Nerve damage. I was told it would come back, but it would take time.

After a few days, parts of my numb face would itch. And I mean REALLY itch. I’ve never felt anything itch like this. And I would try to itch. But no matter how much I scratched the skin where it was itching, it wouldn’t satisfy the itch in the slightest – I couldn’t even feel that I was itching it. Nightmare!

I suppose it was the nerves coming back that made it itch. As the feeling came back to parts of my face, I found that I could satisfy the itch in the places I could feel my fingers scratching, but not in the places I couldn’t! Curious!

As I write, I can feel all of my face except my top lip, and a patch that runs down from my right eye to the top of my lip. The itch comes and goes, but I can guarantee that when it’s there, it’s more intense than any itch ever.

Anyway, enough about me! Some of you might remember my friend Katrina? She’s the one who saved me so much struggle when I had to go back to doing my own injections, by sharing her brilliant tips with me! She’s also brought me back to earth with her logic many times when I’ve been bothered by things (mainly because she’s had all the same worries and has rationalised them for herself!)

Having someone going through the same thing as you can be infinitely important.

So Katrina went in for her operation about a month after I did. Her osteosarcoma was in her pelvis, so she has a whole different set of problems and issues. But we had treatment at the same time and surgery at around the same time. I thought you would like to know she is recovering well. Another long path, fraught with difficulties like infection (Which I’m lucky I avoided) and not being able to walk (!), but she is heading in the right direction! Hopefully her walking will be without a limp in the future.

You try to stay away from comparing yourself to other people going through similar things, but it’s difficult to stay entirely away from it. I think of Katrina and think ‘gosh I’m so lucky I’ve at least been able to walk fine…I could take myself to the pub!!!!’ (As you may have realised, going to the pub signified normalcy for me). But then Katrina looks at me and thinks ‘gosh, I’m lucky to be able to still eat and thank goodness I didn’t have to go into surgery twice and that my face is fine’! People’s perspective on these things are interesting. I’ve even had friends with terminal cancer feel lucky they’re not dealing with what I have, whereas I obviously feel the opposite.

Katrina and I have another friend who we were treated alongside who went in for his surgery in the last few weeks and he has been less fortunate than we.

His osteosarcoma was in his lower jaw. You forget that all those horrible things they warned me about before my surgery are possibilities. You always think you’ll be ok (at least I do). That you’ll be in the group of people for whom it goes smoothly for. Well mine didn’t go smoothly. If you remember, my flap failed after 5 days. They have no idea why it failed and no one has ever had this problem so long after surgery before – it usually happens within 48 hours and they usually know why. But they saved mine. They apparently had a 6hr period after fail to save it and they must have got in just in time and put the vein from my leg in there. Eternally grateful. I should buy more lottery tickets.

But they warned that the flap could fail right from the beginning. That it was a very real scenario. That I had to prepare myself for waking up and they wouldn’t have succeeded. And then what? They would look to prosthetics. Still a solution but not the intended one. Unfortunately this is what he is facing.

So please send your love and support. Because there are people trying to make sense of the impossible, trying to fix the problematic. And there will be a solution for him. And it will be fine. But for now, he is left trying to deal with something no one should have to deal with. But we are all here to be strong when he can’t be. To think of him when he feels small and alone. And if you’re reading this my friend, please know there is a whole army behind you. Both here, and in hospital. And you are their first priority. It is horrible but it will be ok in one way or another (I know it might not feel like it right now). Because that is the only thing we will accept.

Time for an update I think

It’s hard work, all of this ‘recovery’ business!

It’s now 9 weeks since I went in to hospital and 7 weeks since I got out. I’m starting to feel a little bit better.

Each day I have to do a whole stream of exercises for my shoulder, which I must repeat multiple times throughout the day. Some days it’s too sore to do anything with it but I try to do what I can. I also must stretch my jaw, which is really painful because of the huge ulcer (?) just behind my back teeth that hurts every time I open my mouth. I’ve had it for about 6 weeks now and it is tiring.

I have ongoing appointments with surgeons, oncologists, doctors, dietitians, speech and language therapists… Not to mention many scans. Including another dreaded MRI last Friday (more on that soon).

Not being able to breathe through my nose is tiring too. I was expecting it would get better, but I found out a couple of weeks ago that it was intentionally blocked off and maybe in about a year they’ll look to see if they can do anything to clear it. I can’t really deal with processing that information. Not being able to breathe through your nose is really not nice even for one day, let alone a year. My mouth and throat are constantly dry and burning. I also found out that they took a nerve out in my face and as a result, my mouth will remain drooped on the right hand side. Again, in a year they’ll probably do something to hoist it up a bit.

Also my cheek is attached to the flap. So like… Imagine your cheek was superglued to your teeth for most of the top jaw of your mouth (obviously I have no teeth but that’s how far the flap extends). I keep biting the right hand side of my cheek every time I try to bite anything. Also almost the whole roof of my mouth is filled in to teeth level with flap too. That’s a lot of stuff taking up space in there. Added with not being able to open my mouth very wide. Eating is hard work.

Finally, aside from this is the bloody neuropathy which took a turn for the worst after hospital. The pain was regular and at times unbearable. Every night in bed, the sheets felt like they were stabbing my feet with knives. I would be crying out in pain, it was agonising. Thankfully I managed to sleep through it at times but it would keep me awake until I did, and whenever I woke up, there it was again. It has calmed down in the past couple of weeks. I’m hoping it stays away.

I’ve also lost a lot of hearing in my right ear… Not sure what that’s about.

I’m also weak, I tire easily, and have been tackling a cold over the last week.

So that’s me.

But I’m alive. And the swelling is definitely going down, and my hair getting bushy. I’m even thinking about going back to work soon (if I don’t have to go back into surgery again instead, but more on that soon).

Anyway, here are some progress shots for anyone who hasn’t seen them yet – it’s amazing to see how far I’ve come:

The challenges that being home presented…

And so it was that two weeks and one day after the first of my major surgeries, I was allowed to go home.

And you know what? It was hard work. Really hard work. It was such a relief, and I was finally able to relax for the first time in 2 weeks, and it was amazing being in my own home. No more being woken up every few hours for observations. No more being poked every day with needles for blood tests. No more feeding tube. No more doctor visits… The list goes on.

But being home also meant no more morphine or sleeping tablets, and it also meant managing all of my thousands of other medications all by myself. Thankfully Dad stepped up and took over the role of Mr Medicine man.

The other big thing was that I now had to work out what to eat. The feeding tube really got to me, I hated it and I hated the way the feed made me feel so I was so glad it was gone. And I wanted to taste actual food! But this of course meant I was going to have to work really hard on fuelling my body enough for it to be able to keep healing itself.

I had no use of/access to my top lip which meant having anything with a spoon was pretty difficult – no way to scoop anything off the spoon. I could flip the spoon upside down but anything runny like yoghurt would fall off before I could get it in my mouth.

I could really only do drinkable food, like smoothies, juices and soup. Pureed food was just too thick and dry and difficult.

I had regressed to a baby. I was having liquid food, half of it ended up down my front, I couldn’t do anything for myself, I couldn’t sleep through the night, I even had a 0-2 year old toothbrush. But I could at least drink beer, thank goodness!

By the second day we started getting things under control. Smoothies for breakfast, Heinz tomato soup for lunch, Sainsburys soups for dinner. Snacks in between consisted of custard, yoghurt blended with milk (to make it thin enough to drink) and added milk powder to bulk up the goodness.

I also had supplement drinks that they gave me at the hospital to take home with me. ‘Ensure’ they were called. Chocolate and vanilla ones. The chocolate one tasted really good, like a milkshake. But it was so thick and almost greasy, not to mention ridiculously sweet. There was no way I could get through 3 of them a day. The vanilla one just tasted gross. Mum managed to get me to have half of one a day by blending the choc one with ice cream, milk and plain yoghurt, and the vanilla one with raspberries.

I knew once I got home I’d be able to manage my food fine (with mum’s help of course). I would have struggled in hospital if Deepti hadn’t let me leave that day. The logical next step for the nutritionists was to get me onto purée food, as that’s what is on the menu at the hospital. But that wouldn’t have worked for me at all. For one of the few meals I had there I ordered a pureed meal, with soup and yoghurt. All they brought me was the puree meal I couldn’t eat and left out the two parts I could. I would have started losing weight rapidly if I had stayed much longer. If we had waited for the nutritionists to assess me, I’m sure they wouldn’t have been happy. And I bet I would have gone home with a feeding tube I didn’t actually need. That would have slowed my progress for sure.

This bold move by Deepti, and her trust in me to manage this myself saved me. I would have dealt with going home with the feeding tube but it would have got me down and slowed my progress. Do I need to say it again? She is great. I appreciate her so much.

As it is, I have pretty much kept a stable weight since I left hospital, so I think we’ve been successful.

Well I was hoping to avoid hospital again… But here I am…

My Methotrexate levels are meant to be 20 but they’re currently 93…

Wow. That’s a bit crazy!!! So I’ve been admitted. To UCLH and not Whittington at least. And hopefully not for too long at all! And not in my own room because I’m essentially healthy otherwise!

Just not part of my plan. And I hope not a sign of the future, just yet another hangover from the horrors of the last couple of weeks. They’re just going to give me some Calcium Folinate via IV to hopefully knock that down to safe levels. Fingers crossed my body can do the rest on its own!

Mum and Dad have run across to the Cotton Rooms to make me some burritos 😁 yum! Thanks guys! And grab me my laptop and pyjamas.

The lady next to me has been on the phone since I got here and keeps saying ‘allo’ over and over again.

The lady diagonally across from me keeps falling forward and occasionally talking to herself. And kinda sounding like she’s dying from coughing stuff up.

Also there’s a door down the corridor that slams every few minutes.

My nurse Natalie is lovely but she’s almost done for the day.

So… It’s going to be an interesting night!

See what they all think of my alarms for my tablets at midnight and 6 am!!!

Shoulda given me a private room!