The joy of ongoing appointments

I was talking to someone the other day who was saying that going back to the Macmillan Cancer Centre for appointments is something she fears and finds upsetting. And I get it, there can be a certain sense of PTSD with these things, and constant reminders of the trauma isn’t necessarily what you want.

But my views could not be more different.

I remember the first time I walked into that building. Hanging from the ceiling in the foyer is a colourful art display of things picked up on beaches across the UK. From toy spades to flip flops to plastic straws to plastic crates and any other number of things. You could sit for hours gazing up at all the things hanging there, and collectively, I have.

I remember the first time I met all the smiling people who told me they would look after me. The oncologists who said they knew how to treat me. I remember the joy I felt at being in safe hands.

I remember going back every treatment week to catch up with everyone and start another session to cure me. All the people who were working together to give me the best chance at living. The laughs I had with my pharmacist, the smiles from Ambulatory care when I showed up for my chemo. We would debrief on our weekends.

I remember finishing chemo and being transferred over to my surgical team. The same building, but clinic was over the other side. You would think it would mirror the oncology clinic since it was the same floor but it didn’t. It was similar but not the same. But the pattern on the floor was the same – a colourful mosaic designed by the man who designed the Sgt Pepper Album cover. Can you imagine?

Even after surgery I didn’t feel on my own, despite being cast out into the big wide world – I had appointments to come back and see everyone. They still cared, they were still looking after me.

These days I get to come back for Oncology clinic every two months, and a chest xray to check it hasn’t spread to my lungs. I know some people would use that as an opportunity for anxiety that their cancer has come back and they will therefore soon die. I approach these appointments with excitement. I’m so glad and grateful that they keep monitoring me so closely and I quite enjoy getting told every couple of months that everything is ok. And if there is a day when it isn’t, well I couldn’t be more happy that they had kept checking.

The Macmillan Cancer Centre is also where I have access to my psychologist, as well as complimentary therapy (e.g. Massage and reiki *eye roll*). It’s where I can pop in to the ‘Living Room’ to make a cup of tea and probably make some new friends if I feel like it. It’s where I could attend support groups if I needed them.

This is the place that has taken me in, looked after me and hopefully saved my life. That keeps providing love and support, even now. That has somewhat been my second home over the past 18 months. That is filled with people who care about me and my well-being. What an amazing place to have! Why would I fear going back? Why would I get anxious each time they show they are still looking out for me? Why would I be angry at the smiling faces of people who’s job is to help me?

Every time I go back I am reminded of how lucky I am and I smile. I smile for all the good I have experienced over the 18 months, thanks to this very place.

What the experts say…

Every time I see my Oncologist or Surgery team they send a letter to my local GP, the onc at my local hospital, and good ol Sproaty who gave me my diagnosis. And a copy goes to me too. My name gets a tick next to it on the letter that comes to me. I like the thought that everyone gets their own tick next to their name in their copy of my cancer story.

These letters are kind of a way that us patients find out the more specific details of our condition. Maybe add a bit more to the things we’re told, sometimes fill in the gaps.

Each one describes what was discussed at that specific appointment but there is a big bold bit at the top that stays the same each time, though bits have been added as time has gone one. So this is it. This is me…

Diagnosis: August 2017: localised high-grade chondroblastic osteosarcoma of left maxilla. To commence neo adjuvant chemotherapy (cisplatin, doxorubicin, methotrexate).

Treatment: 8/2017 – 2/2018: MAP chemotherapy, complicated with AKI which was reversed, methotrexate was stopped after cycle 4.

Surgery: 5.3.2018: Mid-facial degloving access – right maxillectomy, unblock with nasal bone up to the inferior of the medial canthal area and to the level of the zygomatic buttress, including pterygoid plate. Reconstruction with a chimeric latissimus dorsi and tip of scapula bone flap.

Histology: High grade chondroblastic osteosarcoma — several close margins of a few millimetres – tumour presence on the right zygomatic buttress. Therapy-related tumour necrosis is <50%.

Not sure why they keep insisting it’s left maxilla at the start, it wasn’t. Anyway, sounds like they cut out the correct bit…

It’s always fun reading the letters they write. I feel connected with everyone and informed. And hey, who doesn’t like reading about themselves?

Yes, I had to do a lot of googling of mentioned terms. Had no idea what most of them meant…

MRI and all that

I suppose I should let you all know that I got a call saying there is nothing ominous in my MRI! Yay! To be honest, I had forgot about it, people kept asking me if I had heard and it took me a while to think what I was waiting to hear about. ‘you must be so anxious and stressed waiting’ they would say. ‘for…what…?’ I would ask. Lol clueless.

Next steps? Don’t know. Well, I do know. Teeth!! Actively? No idea. Hoping that referral comes soon, don’t know how long takes to actually get in to see the guy. But hopefully soon I’ll be seeing the man with the teeth about becoming the Jen with the teeth.

In other news. I’m now on the biggest extend setting of my jaw stretching machine. The Speech and Language Therapist said that should last me a while, but it didn’t – just over a week. She also said I could then put it on a bigger stretch setting but it turns out it was already on the biggest setting. So… Um… Over achiever?

Also this morning I rolled my ankle and got a sharp pain in my forehead… Not sure what that’s about. (Don’t worry, it’s not actually related to anything, just an amusing anecdote. Now if I hurt my shoulder and my top jaw hurt, that would be amusing).

Anyway it’s Friday again! They just keep coming, don’t they? Hope your weekends look bright! If they don’t, have a look to see what you can do about it. Even in your dark days there are things to be found.

Another MRI survived and the impending referral for…

So I was filling out my MRI form last Friday and one of the questions was: ‘Have you had any operations on any part of your body in the last 3 months?’

I went to say yes… Of course I have… remember that big thing that happened in March? But… wait… No! No i haven’t!

In fact, It’s been 6 months! My goodness. Yesterday was the 5th of September, and on the 5th of March I was in that first long surgery.

So that’s… fun…

Anyway, MRI. I survived! When the imaging assistant (?) came to get me she looked at me for a bit and then said: ‘I’ve met you before! You’re the lady with the blog!’

I couldn’t have smiled more. I like being the lady with the blog!

It took three attempts to find my blood. Standard. I sat there crying a little bit, clenching my fist and my few teeth, the pain of needles in my veins never gets less. I’m fine with it going through my skin, but once it gets into the vein… OW!

But we got there, and then it was just a matter of surviving the next half hour of stabbing pain in my arm from the cannula… oh, and the MRI.

I had taken 1x Lorazepam about 40mins before I was scheduled to start, but then we ended up running an hour late so I stressed and took the last half one I had. Anxiety over taking my anxiety tablets… Great, I’m a mess.

I got on the tray thing and lay down, Clarence in hand obviously, asked for music (The Beatles!), put my headphones on and lay in wait. I had specifically asked if they could wait until the music started until they started putting me in. They agreed, but then started moving me in before the music had started.

PAAAAANNNNNIIIIICCCCCCCC!!!!!!!!!!!!!!! HYPERVENTILATING!!!!!!!!!!! TEARS!!!!!!!!!!!!!!!!!!!!

He stopped immediately and put his hand on my leg so I knew he was there. I needed to be in control and I suddenly wasn’t. But within 20 seconds I heard ‘Here Comes The Sun’ through the headphones and I knew it would be ok. Because the sun always comes out when that song plays. And it reminds me of so many special people in my life.

And in I went. He kept his hand on my leg until I was in. This is unbelievably helpful. If there are any radiographer/imager/MRI people out there (honestly if there is, please get in touch and tell me what your job title actually is because I never know what word to use!) and you have someone who is anxious before an MRI, putting your hand on them as they go in lets them know that they’re not actually as isolated as they feel. Honestly, you feel like you’re trapped so far in there and a hand telling you that the outside world is not actually that far away makes so much difference.

Anyway, the rest of the scan was uneventful. The music wasn’t loud enough but I could just hear it mostly. Then it stopped for a fair bit of time… but I was ok. Cool, calm, collected.

Afterwards I took myself out to see the Cabaret. That was fun. Then met my housemates at the local to debrief. I made friends with an actor and wrote a limerick about him, posted it on Twitter and tagged him in it… Although he followed me back on Twitter, he didn’t ‘like’ my limerick and I think he probably thought I was a bit crazy. But I’m going through a phase of writing limericks about new people I meet (as you do) and I’m not ashamed of it. Oh, if you want to read it here it is:

I once met a man who’s an actor
I asked if he had won a BAFTA
We wrote a musical
At the Bar, he was my pal,
And I asked if we could hang out after!

Anyway… Tomorrow I have my Clinic Appointment where I was told that pending a clear MRI, I will be getting REFERRED FOR TEETH!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! So……… I’ll let you know!

Happy 70th birthday NHS

It is the 70th birthday of the NHS.

Where to start? I suppose with something that’s obviously close to me.

Looking at cancer alone – 50% of people get cancer. That means you, and your mum. Or your partner and your dad. Or your sister and your best friend. I know of people in the US who couldn’t afford treatment, or who have gone into hundreds of thousands of dollars of debt. I wouldn’t be able to afford that, would you? Even in Australia, when my father got an MRI checking his prostate cancer, he had to pay $600/go and that’s on top of private health care.

Even just looking at MRIs… I have to have one every 2 months. No way could I afford like £400 2 months, and that’s just for maintenance scans! Who even knows how much everything else would (have) cost.

Thanks to the NHS, I’m not forced to go into ridiculous amounts of debt just to have a chance of staying alive. The beauty of us all paying that bit of tax to the NHS means that anyone can get the treatment they need regardless of whether they manage to have a job that gives them lots of money. Their fate will not be sealed by their pay check. And it’s there for when the rest of you need it.

And I haven’t had to settle for a sub-par surgeon or someone who isn’t a specialist in my area, I’ve been able to get the surgeon I need, in fact one of the best.

When I was diagnosed, some people asked me if I would move back to Australia for treatment. This confused me a lot. Why would I decide to leave my life and the country I want to live in just because I have cancer? There’s no need to necessarily give up on life just because you have cancer (not for me anyway, I know everyone’s cancer is different)! What a depressing thought that I would suddenly quit everything of the life I have built and want to live.

But that aside, why would I want to go back to a country where you’re not looked after? Where you have to fend for yourself and if you’re not rich you must go into a lot of debt to have a chance of life? I say this with not a lot of knowledge how it would be to have my cancer in Australia, maybe you can get some funding to help and maybe Medicare can help with some. But going off my dad’s experience, it is no NHS.

And the people who work for the NHS… they are the most heroic people. The doctors and surgeons are making miracles happen, the physios, anaesthetists, radiographers, therapists (ok, I’m not going to go on naming all the types of professions in the NHS, if you’re one, you are the best) are irreplaceable, the nurses are absolute angels, even the people cleaning my room when I was in hospital brought me so much joy.

Sure I’ve had moments where things haven’t been great. I’ve had blood work lost, I’ve waited in a room in A&E until 3am waiting for a bed in a ward whilst in the absolute worst of my neutropenia and illness during chemo (but they did manage to find me a private room eventually), I’ve had dentists ignore my cancer (though to be fair they were NHS but made me go on private to get an appointment quickly), I’ve had doctors forget to come around and discharge me from hospital, I’ve had doctors in hospital causing me unnecessary pain and discomfort when they thought they were doing the right thing but didn’t take a moment to think… but it takes time to go through my memory to find bad moments, and they are only a small handful of thousands of fantastic ones.

I feel like people who complain about the NHS are those who haven’t needed it yet. Or even if not, I know there can be bad experiences in anything. But the amount of people I know who the NHS has saved…

The NHS makes me proud to be British. Growing up in Australia, I never felt Australian, I knew I was British. And from the first time I stepped off that plane in London 3 years ago, I knew I was home. I don’t feel like I could ever leave. There are many things that make me proud to be British, and a few things that don’t, but above everything is the NHS. This is something so important, special, necessary to our lives here. It underpins everything, looks after us, and it’s something we’ve helped create. What a fantastic thing. I know it struggles, I know more needs to he done to help it out, I have no suggestions of how to help it, I wish someone did. But I do know we need to protect it, to keep it alive.

Happy birthday NHS. I think everyone who has ever worked for the NHS in any capacity can really take this as their own personal celebration too. From the people who used to drive blood donations around from the donor to the receiver whenever needed before refrigeration existed, to the clinical trials which ended up saving lives, to the doctors working long shifts to make sure everyone gets seen and we all live.

We thank you all. So many of us are here because of what you’ve done over the years.

Happy birthday. Have a champagne, NHS, you deserve it. But don’t let your hair down too much, because we need you, every second of every day.

The final bits…

With the trachy out, it was time to start breathing through my mouth. My nose was entirely blocked so there was no chance of it helping me out. My mouth got so dry. Night time was the worst. I already wasn’t sleeping much, but now my mouth and throat were dry and burning. And I couldn’t swallow. I could use little pink sponges to moisten my mouth but it didn’t really help. So I grabbed a syringe and syringed water into my mouth to properly coat it. Then I realised I could swallow my saliva and I could put water in my mouth and I may have cheekily combined the two a little. It didn’t make my mouth any less dry during the night, it didn’t stop me waking up constantly, but it did bring me some relief.

The Trachy was out on the Friday. On Saturday Dr Claire came to visit me and said I could start trying to drink clear liquids. I sheepishly said I had been experimenting with it a tiny bit. I showed her and her two doctor friends in tow how I had been syringing water into my mouth and swallowing it.

I had to do it over the sink because there was always a chance I would spill it. I couldn’t close my mouth so it was hard to make a seal. But I managed to seal my bottom lip with my flap. It had been almost 2 weeks since I’d had anything to drink, and a lot had changed in my mouth. But I practiced.

When Mum and Dad came to visit that day we went down to the cafe and had a peppermint tea. I shared it with my jumper, but I did get to enjoy some of it. Dad also popped out to get me some Ribena. The Ribena was amazing. It got rid of the horrible taste in my mouth, and it was pretty nice to taste something sweet and cold and delicious.

The following day I was allowed to progress to REAL TEA and we went down to the cafe again and I had my first cup of tea in 2 weeks. I don’t think I have ever gone that long without tea. I hope to never do it again.

On the Monday I had an assessment with the speech therapist Lucy to assess my swallow. I like her. She was the one I met before the surgery, and seeing her in hospital felt like meeting up with an old friend. She was amazed by how well I was doing considering my lips wouldn’t meet and I had just had this massive surgery! My swallow was not compromised, though my mouth was being a bit tricky. We tried a syrupy chocolate supplement drink and then custard. Using the spoon was difficult because I didn’t have a top lip available to scrape the contents off it but I quickly found I could use my bottom lip for that job. So I would put the spoon in my mouth, flip it, scrape it off, and say ‘mmmm custard’. (I like custard).

I was spurred forward by this and that afternoon I was given the ok to move to puree food. I ordered pureed salmon for dinner. But they ran out. So I got puree roast beef. Um… why is that a thing? It was horrible. I struggled to get it in my mouth, I struggled to get it off my spoon, and I struggled to swallow it as it was like dry paste. Not to mention it was yuck. The soup and the yoghurt I was fine with though. It was messy, and I had to cover myself in a towel, but I got through it. They would be assessing me to see if I would have to go home with the feeding tube or not, and it seemed likely I would. I’d had my training, I had the pump etc. I was ready to feed myself at home. I wasn’t looking forward to it, but figured it was better than staying in hospital for too long.

The next day Deepti came in for the Doctor’s visit. The first thing she said to me was ‘how would you feel if I told you that you could go home today?’

I was in shock. ‘I would feel very good!’ I finally exclaimed.

It was Tuesday. Two weeks and one day after first surgery, one week and three days after second. There had been talk of me going home near the end of the week, but I had just been saying to my parents the day before that I didn’t know how I’d last many more nights in there. They were starting to take their toll.

Deepti asked how I was going with my eating. I said it was difficult, but I was fine with the soup and yoghurt, custard etc. and drinking, but I found the puree food tricky. She said she trusted me to sort out eating and promptly took out my feeding tube. I can’t explain how happy I was. I had not been feeling very well with the feed they’d been giving me and I hated being hooked up to it. I wanted to be mobile and zoom about the place.

I was freed from my shackles and about to be freed from my incarceration! I couldn’t believe it!

The rest of the morning was spent packing, getting loaded up with supplement drinks, dancing around the room with Clarence, saying goodbye to nurses and Kat the physio (I was going to miss her the most) and waiting for my medication so I could LEAVE. I was excited to tell my parents when they turned up for their daily visit that I would be leaving with them!

I was exhausted when I got home. I hardly had the energy to say hi to my housemates. But I did. Then went to bed. I had a long way to go, but I was home. No more being woken up every few hours. No more having to buzz and wait and ask every time I needed something. No more freezing cold dry room. No more having to appear perky for every new visitor. I could just lie on the couch, drink smoothies and feel sorry for myself. Things were looking up.

Little adventures

On day 13 of my hospital stay, Kat the Physio said I was allowed to go for a little adventure, so I actually got to leave the ward and we went up to Level 16 and looked out at the view. UCLH has a tall tower, and is situated pretty in the middle of London, it therefore has a pretty decent view! The big window looking out from the corridor as you leave the lift faces West.

I wore my hospital sock/slippers, and we carried box of tissues, and off I wobbled.

I also had a pretty decent view from my room for that matter. It was nice, especially when it snowed. In the afternoon I would sit in the chair by the window and watch North London finish its day.

We went up to level 16 quite a few times. There was something calming about looking out over the tops of the buildings, watching the buses traverse the streets, watching the world go by. One day as we were getting into the lift to head back down, I ran into a Physio I had seen in ICU briefly. ‘Jen!’ She exclaimed! It took me a minute to place her, but I got there. We had a quick catch up, it was nice to run into her.

One day we even went out the bottom of the building and stood in the sun. Its rays soaked through me and recharged my batteries a little.

Once my Trachy was out and I got the OK to have clear liquids, we started making trips down to the cafe for peppermint tea, and then the next day I was allowed proper tea. That first cup of tea was heavenly. I had been desperate for it. Most of it ended up down my front (I couldn’t close my mouth, so keeping liquid in there was an interesting challenge) but being able to sit in the café and have a cup of tea made me feel a bit human again.

Mum and Dad visited every day. This was amazing, it made me so happy. I looked forward to their visits and was sad when they had to leave. Ma would read me a couple of chapters of a book each time. It brought me no end of warmth and comfort. Da would pop out and get me things like wet wipes and Ribena once I could start drinking.

My days consisted of a few highlights – visit from the doctors, visit from Kat the Physio, visit from my parents. Occasionally I got other visits too.

Near the end of my stay in the ward, I had a visit from the Sister I had met during my first time in ICU. It was so nice to see her. Once again, the people I am meeting along the way are amazing. These poor people who work in ICU – they deal with people just coming out of anaesthetic, and people in their first few days after admission… basically they see everyone at their worst. And a lot of them saw me at my worst. And the amount of love and support I got from a lot of them regardless, was amazing. But it must get disheartening to never see the stage when people get better! You just get them to a stable point and then ship them off to the ward. Anyway, it made my day that Erika came to visit, it was nice to see her again, have a catch up and get a hug.

On my final day, as I was packing up, who popped in to my room but my bestie Rebecca! I was sad it was looking like I wouldn’t see her again, so I was ecstatic when I saw her and gave her a huge hug. We had a bit of a catch up and a chat before she had to run back to work and I had to talk to a nurse about discharge details.

I can’t quite explain how much I like and appreciate these people. I know I only met them for a short period of time, but some nurses (and doctors, nursing assistants, etc.) I felt like I really connected with, and when I was feeling so low, that meant everything. It’s something that’s hard to explain if you’ve never been in this situation. But these nurses were my lifeline. And the fact that they came to visit me after I had left their care will stay with me forever.

View from T16:

View from my room:

Out in the sun (note mum carrying the arsenal for dribble and blood catching. Also note trachy is out):