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!!

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.

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.

Surgeon meeting take 2

So I met with the surgeon today. We’re aiming for surgery on the 5th of March. That’s soon. When will I find out if that’s going ahead? Hopefully Tuesday. 5 days before I would be going to hospital. Plenty of time for my parents to book tickets to come over, right?

Found out I’ll be losing some of my right nostril in the surgery. He said he’ll try to keep it minimal. So that’s wonderful… Permanent damage. Hopefully only a small bit (still not good), but it’s possible I’ll wake up with a huge chunk of my nose gone. And that’s not like… Fixable.

Also losing some of my nose on the inside, all the way up to my eye socket. He’ll build that back though.

Found out there’s 50% chance of him having to stop the surgery half way through and leave me in hospital for 4 weeks with a big hole in my face before doing the second half. (Though I don’t know if that stat is correct because he was angry at us for asking questions so was stretching the truth on a few things to try and scare me)

Found out I’ll need a feeding tube for quite a while. Weeks? Months? And I’ll probably need a tracheostomy during surgery. 70% likely. No talking for 3-5 days post surgery. I’m sure that will be bliss for everyone around me at least!

Also it’s likely that the bone for surgery will come from my shoulder. Which I think is better than leg. Oh yeah and if you were wondering, it wasn’t my choice to make whether it’s bone or prosthetic. Prosthetic is only if you can’t bone for some reason.

Here I was going into this meeting thinking there couldn’t be much more for them to drop on me. Ha. My mistake.

I did also find out that while a year to wait for teeth is standard, it’s possible to start looking at it after 6 months depending on recovery. So there’s some hope.

A thousand thanks to my girl Shiri for coming with me to the appointments today. And for bringing me a sandwich! Oh the notes we wrote. Well mainly her. Because I can’t write, remember?

When PET scans turn into surprise MRIs…

I’ve had PET Scans before, all good. They’re not a problem except that it’s always freezing. I had one today, so I went in and they injected me with the radioactive substance and I had to sit there for an hour without using my phone or doing anything really. I listened to an audio book.

After the time had passed, they took me in to the machine and I lay down. Then they started clipping me in and weighing me down by putting all these heavy cameras on my chest which I thought was weird, I’d never had that before. Then they wedged foam around my head so I couldn’t move it and clamped the cage over my face and I realised for some reason they were putting me back in the MRI machine.

I panicked. I couldn’t move, I couldn’t breathe, I started burning up. Why did no one tell me this PET Scan was actually an MRI? I immediately started trying to break out but I was weighed down. Instead of letting me out, he told me that it was all fine because he had a little mirror he would strap on my head so i could see out through a tiny rectangle. He then held that in front of my face and i couldn’t move or breathe or see anymore either.

I was hyperventilating, tears streaming down my face, trying to get out, they did take the cage off my face but they wouldn’t let me up. Instead they put a straw in my water and told me to drink. I choked on it.

Eventually they let me out. ‘I didn’t know it was going to be an MRI’, I told them. PET Scans had never been in an MRI machine before, why was it suddenly now? ‘Oh it’s a PET-MR’ they said like that should mean something to me.

Then I stressed out even more because this was a scan I needed to get done and I didn’t know how I was going to do it. But as it turns out, I didn’t need the MR part of the scan. We went upstairs and they put me on the PET-CT machine that I had used the previous two times. Apparently that’s fine.

It took me a good 10 minutes to calm down after the MRI scare. And any time I thought about it during the day I had to try and hold back tears.

I know it sounds silly. I had a panic attack just from being near an MRI machine. But it really terrified me. I couldn’t take it. According to the guy, it happens to one in five people. That’s more than I would have expected. He then told me he had a moment in the machine once and it’s tight but nothing to worry about. Great, thanks. This machine was even worse too because the far end was up against a wall. Not that it makes any difference once you’re in there, but knowing you’re going head first into a pringles container is even more scary than going into a toilet roll.

Yes, I think we can confirm I have a problem with MRIs.

Emergency blood transfusions!!!

So I came in this morning for a quick pre-chemo blood test, expecting to be in and out quickly.

I wanted to check what my platelets and neutrophils were doing so my friend the Australian nurse Charlie said to hang around and they’d be able to tell me the results in about 20 mins time. So we waited.

And good thing we did. My neutrophils were a very respectable 1.9 which was a very pleasant surprise (I’d been tentatively hopeful for 0.5). However, my haemoglobin was very low (63) and my platelets had dropped again (30). So. 3 units of blood ordered asap. We’re ignoring the platelets for now. Apparently 20 is the worry.

Two I’m having this afternoon – I’m currently on my second.

The third I have tomorrow.

Thanks again to the amazing people who made this possible. Blood donors are saints.

Now. Tomorrow. I have a kidney test. This goes for 4 hours. I get injected with… Something… And then I go away for two hours. Then I come back every hour for three blood tests. They worried me by saying I would have to have a cannula and that they couldn’t use my PICC line. I was aware for the injection I would need a needle, but I hoped they wouldn’t need to put a cannula in me all day to take the blood from – that’s what my PICC line is for! And we all know from recent experience that cannulas don’t work. Plus my whole right arm is bruised, swollen and sore.

BUT! I just emailed my CNS (my main nurse contact) and she called the kidney test people who confirmed that they could use the PICC line for taking blood.

OH THE RELIEF!

So tomorrow is dad’s birthday. We’ll come in for the first, mean part of the test where I have a needle. Then we’re going for birthday brunch nearby! That’ll be nice. Then back and forth a bit for a couple of hours. Then back over to haematology for one more unit of blood which will take about 2 hours.

And then we’re free!!!!! Over for a drink in the old booking office for the St Pancras station, an absolutely fantastic building. Then up for birthday dinner in Angel.

Hopefully everything is coming up Jen from now. Just need those platelets to sort themselves out.