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.

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 kindness of strangers

I want to take you back to the Friday before I went in to surgery. I had been at work that day and as the day was drawing to a close, my friend said ‘so… Pub…?’. It was just us three close friends left in the office and it turned out we all had a free night so we finished what we were doing and headed to the local for a few drinks. It was my last day at work for a while and the last time I would see my two friends for some time. We drank wine, we laughed, we forgot everything serious and we were just three friends having some drinks after work on a Friday. It was perfect.

After a few drinks it was time to head home and we had our hugs and goodbyes and I told them I would see them again on the other side. We all went off our own separate ways.

I took my way down to the tube station, a spring in my step. I was tired so I sat while I waited for the train to turn up. A lady sat down next to me. I was playing on my phone like a good millenial does. And my useless neuropathy hands did their usual thing of throwing my phone on the ground. The lady next to me was kind enough to pick it up for me. ‘Sorry’ I said ‘my chemo hands are useless’.

She asked me more about my chemo and cancer and I said that I was going into surgery on the Monday to cut out half my face and rebuild it. I said it was scary but I was keen to be moving forward.

She then reached into her bag and pulled out a little wooden cross. She said it was given to her by an Israeli. She said it had brought her luck over the last few years and now it was time to pass it on to someone else who needed it: me.

I asked her if she was sure and thanked her profusely. And at that moment my train turned up and I had to run. I told her how much it meant to me and thanked her once again as I ran off. I regret my brevity but sometimes moments are fleeting.

I am not religious. In fact I am quite strongly against religion. But the thoughtfulness behind this action absolutely overwhelmed me. I cherish this little cross. And it came with me to hospital and sat on my table next to me for those two weeks. It now sits at my bedside.

These moments of the kindness of strangers are just amazing. I will keep it close by, I think for the next 5 years. I.e. Until I find out the cancer is gone. Then I shall let it choose its next owner and pass on the luck it will have brought me.

Sometimes I feel like I’m in a movie. Life is constantly proving to me how crazy and remarkable it can be.

So no, I’m not religious, spiritual or superstitious, but I believe in people. People never cease to amaze me or make me feel special.

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):

Woah hey look, she lives!

I can only apologise for my radio silence. I know none of you would blame me for a moment, but I’m sure you have all been concerned, intrigued, interested… Some combination of all of the above, maybe some other things too.

I have not been up to writing at all, and I’m still not. But I do have a lot of stories too tell, and they will come out.

For now, I will give you the quick run through.

I went into surgery at UCLH on the 5th, came out late (16 hr surgery) and started the recovery process. It was gruelling. Then on the Saturday morning, day 7, suddenly the new bit, the ‘flap’ of skin from my shoulder that was making up the roof of my mouth suddenly started failing..They hoped it wouldn’t be serious and they put me back into emergency surgery, hoping to save it in the 6 hour window they apparently had, planning on a 4-6 hour surgery. So before long they had me under and when I woke up I found out it had been another big 10 hour surgery in which they had taken a blood supply from my leg, to bypass a clot that had formed in my neck.

Thanks for all your well wishes everyone, they meant so much but unfortunately the first attempt didn’t go so well. You never expect the ‘in small cases this might happen’ will happen to you but I guess it can.

So that’s two massive surgeries in the space of a week, mere weeks after completing 6 months of chemo. My face was so swollen, my shoulder hurt, I couldn’t talk, I was in so much pain from my cannulas, I felt like I was dying. Each day I woke up feeling worse.

We’re now at day 5 of surgery number 2, day 12 in total. This morning I felt worse than before too. My face and new mouth are so swollen. But I’ve had some wins today (I’ve even managed to do some talking today) so I’m hopeful that I’m getting close to tomorrow being a better day.

To friends who have been here with me since before the surgery, thank you for your patience, your support and your messages – some I’ve had a chance to read, some I haven’t but I will, and I plan to reply to them all.

Mum and Dad, thanks for coming by to see every day. The days when I was too tired to hold a conversation, the days when I hadn’t slept at all and was demoralised, sore, confused and frustrated, the days when I had wins, the days when everything was failing apart. Thank you for pulling me back into consciousness after surgery.

To all my new friends, you are some of the most amazing people I have ever met and you have kept me going through the hardest time of my life with the greatest smiles, the most amazing attitudes and so much patience.

I had a visit this morning from one of my surgical team, as I do most days – Deepti is amazing, just seeing her face makes me smile each day no matter how bad things are. She’s a total rockstar. She mentioned she had been reading the blog and I thought gee, it’s time I wrote you all something at least, even if it hasn’t been much.

So to everyone reading this, thank you from the bottom of my heart. I’m not going to lie, there have been many days when I have wondered if it’s all worth it. But you do all help me through.

I’ll be back when I can. Still not out of the woods but still (hopefully) going in the right direction).

I am desperate for a sip of water, then of course cup of tea.

I will post photos at some point. I warn you, they’re very real. Scary.

Somehow, we have found ourselves at the end of the first part of all of this

No.
More.
Chemo.

It kind of ran up on me suddenly, with all the unknowns of whether I would be finishing my chemo or not. The ending was pretty anticlimactic I suppose. As it was chemo at home, it had been fairly easy. No pumps or 3L/day of water leading up to getting disconnected, no lugging all my things home from the hotel. In fact I spent my final night of chemo at the pub, drinking too much with my housemate and chatting to all the locals, making friends and planning post-chemo parties. Then I popped in to Ambulatory Care on the Sunday, saw Damien and Freddie, got disconnected, scheduled my PICC line dressing change for the following week and went home.

Yes, chemo is over. No, I wasn’t able to finish all the chemo I was meant to have. No, I can’t currently feel my hands or feet and they could take months to come back. No, I’m not feeling ‘better’, I’m actually feeling pretty dead, as expected. And the self-injections have been an interesting challenge with the current hand situation. Well at least the pain in my hand and the difficulty in holding the syringe takes away from any pain or fear for the needle. I’m so good about it now.

It’s a little difficult to really get excited when my mind is running straight on to this huge surgery I have coming up, plus lots more unknowns of when it’s going to be, what it’s going to be, etc.

But my goodness, once I’ve spent the next week feeling progressively worse due to the latest dose of chemo, then I can start actually getting better! My hair can start coming back properly. No more taking my temperature 6 times/day to see if I need to rush to the hospital. Yeah I’m going to have to face a lot of pain and a very long recovery with this surgery, but I won’t be regularly killing all the healthy cells in my body. I can start building up my strength, though I know that will take a long time. Years maybe. And once I know when surgery will be and about how long recovery times are, I’ll actually be able to see an end to it!

And after I’ve survived this week, I’m going to do some celebrating! Try to fit in lots of dinners and drinks with friends in the few weeks I have, maybe fit in a short weekend holiday even!

Most importantly, thank you for all the love and support you’ve all given me so far. I’m so glad I decided to write about it as I’ve been going and I’m so glad you all decided to come along with me. It certainly doesn’t stop here, there is plenty more to come on this ‘journey’. Cringe. It’s definitely not a journey, it’s just a shitty thing I’m battling through. But it’s definitely been easier with all your support. Thank you all.

Unfortunately… No going home today.

Most importantly, I can’t thank you all enough for your finger crossing, crossing of various limbs, thoughts, hopes, well wishes.

Unfortunately cancer/chemo wins this round and I can’t get home for our planned Christmas lunch /day of cheer tomorrow.

I was feeling a bit down about it. But we’ll go to the pub for lunch instead, I’m getting ma to bring in my Christmas dress, and hopefully I can go home tomorrow eve.

I’ll take mum and dad to the Christmas markets on Sunday too so that will be nice.

Chemo isn’t being held up on my account next week but due to the public holidays I don’t start again until Wednesday. So I will get an extra day with my parents before they leave, which is pretty great. I’ll be stuck in over the following weekend, definitely Saturday, hopefully not NYE, but hey… It’s not like I can really go out partying anyway! So I guess no great loss.

So… It’s not what I was hoping for, but it will be nice.

And we always make the most of what we’ve got!!!

And really, I’ve got a lot.

I’ll try to check back in over the weekend but in case I don’t, Merry Christmas everyone. You are all amazing and I can’t thank you enough for your love and support. You make me so happy! You give me life! Give all your loved ones a hug. A big hug.

I’ll leave you with a photo of one of the Christmas Trees in the Cotton Rooms: