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.

#scancitement – my version of #scanxiety

This post probably has more relevance for my cancer friends and family, the rest of you might not quite understand what I’m going on about, but please bear with me. Here is an insight into the world of regular scans.

You might have heard (well… read…) me say before, I don’t get #scanxiety. I don’t see the point in assuming something is bad before I know it is, that just sounds stressful (yes sometimes I’m too logical for my own good but in this instance it’s useful). In fact I think scans are great. They either prove things are fine (yay!), or they catch anything that isn’t (phew!) then you can start doing whatever is needed to manage/reverse what the scan shows.

So I suppose instead of #scanxiety I get #scancitement (slightly less catchy). The results either make me happy that things are good or relieved that whatever is not good has been caught. I guess you could favour being blissfully unaware of things being bad but that’s not great and especially when it comes to cancer, which can lead to things getting a lot worse very quickly.

It’s not that I’m happy-go-lucky, ignoring the possibility that the results could be bad, I do prepare myself mentally that the results may not be good, but that’s as far as I go. I’m not minimising other people’s fears when it comes to scans (and a lot of people get a lot worse results than I have so I’m only commenting on my own set of circumstances), I totally get that it’s not something that people can just switch off, I’m just saying that these fears don’t apply to me.

So I don’t tend to think things are bad until I find out they actually are, which is generally a good thing, but can also have some not so great side effects when it comes to early detection for if my cancer comes back.

I’ve had chronic widespread pain for years and I just put up with it (doctors are yet to find what causes it, I suspect it’s fibromyalgia, or something equally as useless to diagnose and treat). My cancer didn’t present with pain but that’s not to say it won’t if it comes back. I’ve had quite a sore back for the past week, no I don’t think it’s cancer in my spine, but will there be a point where it actually is, and I ignore it for too long and just chalk it up to some other unexplained and inconsequential pain? If I were to go to the doctor about every unexplained pain, I would be there weekly and they would never take me seriously.

I also tend to have IBS symptoms fairly often. How will I know if it’s just normal or if I have bowel cancer? My Nan had bowel cancer… (I have learnt from my amazing bowlie friends to look for blood/changes so I’ll keep that in mind).

It’s really hard to find a balance between getting everything checked and getting nothing checked. Where do you draw the line?

So I am grateful for scans. They take the pressure off me. Although the ones I have won’t pick up other cancers, they are at least checking the most common places for mine to spread to, so that is a relief. If I could, I would opt for getting everything scanned regularly, including blood tests to check for things, and whatever else. That way it wouldn’t be up to me at all and I can forget about it, knowing it’s not my responsibility!! Now that would be a relief!!

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…

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):

Trachy tales

While a lot of the point of this post is really to say ‘Kat the Physio is amazing’, because I definitely haven’t given her enough time yet, I feel I also need to talk a little bit more about the Tracheostomy.

The concept is great. Hole in the neck to breathe through, so no matter what they’re doing to your mouth/face, no matter how much swelling, you are still breathing fine.

I kind of wish I’d had more details about it explained to me before hand because I had no understanding of how it worked whatsoever and it stressed me out. I wasn’t in control and I didn’t understand what was going on. In fact I regularly wrote Kat messages saying that I didn’t understand what she was doing. She was very patient and explained everything to me. She even drew me some diagrams which really helped. In fact a few people drew me trachy diagrams, I have three in total in my books. At this time I think I was still falling asleep mid conversation but regardless, Kat taking the time to explain everything to me was very reassuring.

After you’ve had it in for a while they start going through the steps to take it out, weaning you off it, which can take many days. I started the process before I had to go back in to surgery the second time, but had to start again from there. It was 6 days between second surgery and getting it out. I don’t think I would have lasted much longer.

Of course you can’t talk with a tracheostomy. This is the most obvious effect of it. It goes in below your vocal chords and seals everything off – no air rushes past to make noise. Not great when you’re straight out of surgery. Also means making friends is harder (although maybe people liked me more this way).

Firstly, the tube irritated me so much. I’ve always been quite a cougher, often quite wheezy and irritated. This was like the ultimate. And you can’t cough with a trachy. You can try, and it just makes a horrible hoarse sound and just irritates more.

I also could often hear mucus in my breathing which stressed me out and I wanted them to suction it out for me but they didn’t seem too bothered. Weird.

I had a constant struggle with nurses over clearing the trachy. They have this super long suction tube which they shove miles down inside your trachy and would almost kill me with coughing for a good 15 minutes. I hated that one and it was never necessary. Alternatively, I could cough up whatever was in there and they could just suction it out the end of the tube. No dramas. But they all preferred the first and insisted on doing it. A few of my special nurses got it though. They had my back.

Every time I coughed, the trachy also pulled on the stitches holding it in which hurt, and there was often mucus and blood that came out onto my neck when I coughed which I hated so much (who would like it…)

So day 2 post second surgery it was time to take the first step with the trachy – deflate the cuff around the tube itself. This allows some air to flow through. Unfortunately this required sticking the long thing through the trachy which sent me into a tremendous coughing fit and Kat decided I wasn’t ready so the cuff went back up. This didn’t fit well with my obsession to be always moving forward, but I was tired so I didn’t complain too much. Kat also knew how much I liked to progress so she was pretty good at managing my disappointment if I ever didn’t.

The following day we did it again and I did a lot better, though lots of coughing still ensued. They also changed to a different inner tube at this point.

The funny thing is, coughing is usually a sign that you’re not ready to progress to the next step. My coughing was my body screaming for the bastard to be taken out.

The day after, it was time for the important step – the speaking valve!!! This allows air to still come in through the trachy, but it goes out through your mouth, therefore passing your vocal chords, therefore allowing you to talk. And amazingly, cough! It was a dream!!! I got the valve in and mum and dad came to visit shortly after. Kat passed them coming in as she was leaving and mentioned that there was a surprise waiting for them but she wouldn’t say what.

They came in.
‘Hello’ they said.
‘HELLO!!!’ I replied.
For a moment it didn’t register with mum. ‘Did you just speak?’ Asked Dad.
That was fun.

The second I got that speaking valve in everything felt better. I could also swallow. I’d accidentally been swallowing over the day or so before this and it felt like it was pushing mucus and blood into my nose and ears (I don’t know if that’s actually a thing but either way it wasn’t nice). But now I could swallow and talk. Phew. Usually you would only have the speaking valve on for a short period of time at the beginning but I kept mine on full time. It felt so much better.

Kat had never heard my voice. I was excited and talking at a thousand miles an hour, forgetting that as I had a huge new mound of skin in my mouth, no teeth and an entirely blocked nose, I was pretty difficult to understand. Once again she resumed the role of telling me to slow down, but for different reasons this time. One of the speech therapists was there too. When she heard my voice she asked me where I was from. People don’t usually realise I’m a foreigner! How did she mange to do it amidst my compromised speech?! She was from America, maybe expats are particularly tuned in to accents that aren’t quite British. Or maybe it was due to her being a speech therapist, I suppose she’s used to dealing with language and how words are formed.

By this stage we had all worked out that the sooner we got this thing out, the better. So after two nights with the speaking valve, it was decided it could come out. This had another implication too – that my surgeons were feeling confident that I wouldn’t have to go back in to surgery.

Taking it out was an interesting affair. I wanted Kat to take it out as she was my bestie and we’d been through so much together. But there was a nurse who wanted to have a go. Andrew was also there, my surgical clinical nurse specialist.

I’m always happy to let someone have a go, everyone needs to learn sometime, but this was one of the most heavy handed nurses I’ve come across. She was lovely, just didn’t have a very delicate touch. But Kat was there too, to help, to explain things to me as we went, to hold my hand when it hurt.

My goodness did I cough. They had to hold the trachy while they cut out the sutures and I couldn’t stop coughing. Especially when the nurse took over holding the trachy and she pushed me down on the bed with how hard she was holding it, I remember staring up in fear. Andrew seemed to realise and stepped in to do it quickly. I tried really hard not to cough, I tried to be good. I mostly failed.

In the end, actually taking the trachy out was the least difficult part. I didn’t even notice when they pulled it out of my neck, except for the fact that I miraculously stopped coughing. They told me it was out and I suddenly realised I was breathing through my mouth again. I lay there smiling, a look of bliss on my face. Kat was checking the oxygen level in my blood. All good. ‘Are you ok?’ She asked. I beamed up at her, nodded and gave her a thumbs up. It was like I was in a dream. I was floating on clouds.

They dressed the wound and explained to me that I would need to put my hand on the hole whenever I tried to talk or cough, because until it healed, I had a rather large hole in my neck. In fact I woke up during the night that night and realised that I was suddenly breathing through my neck again and needed to get it re-dressed.

So many people who saw me after that commented excitedly on how my trachy was out. They all knew how much it bothered me. This was a good day. This felt like a win.

Trachy drawing:

Hole in my neck after getting it out: