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!!

CPET issues and successes

So I went in on Friday for a CPET. Basically, it’s a fitness test. I cycle on a bike, they see if my heart can withstand surgery. Sounds simple enough.

I went in and they checked my haemoglobin and it was too low to do the test.

Wait, let’s backtrack a bit. I’m missing important details. First a nice, young, good looking man came out and took my height and weight. How much do I weigh? Oh wait, just let me take off my shoes. Jumper. Scarf. Beanie… Gotta give myself the best chance I can, hey! He immediately picked my accent. Heyyy that doesn’t happen often! Of course one of the exercise physios is from Adelaide. She’s currently back there for a holiday.

Then I waited a bit in the waiting room and another nice, young, good looking man came and got me. This was going to be just fine by me.

We went in and they asked me a few questions. Then they pricked my finger to check my haemoglobin. I’ve had my finger pricked to check my blood sugar before and that’s fine but this hurt!! I came up in a bruise quite quickly. Haemoglobin: 79. Too low.

Nice guy #2 called the doctors to check, meanwhile nice guy #1 went on with the breathing test. I had to breathe into a tube and pretend I was blowing out birthday candles – big huff at first and then expel the rest to blow out the rest. I always appreciate a good analogy. A picture of a cake came up on the screen and I blew out the candles! Fun! It even came up and said ‘good job!’ on the screen. Turns out my lungs are good.

Nice guy #2 (he was the exercise physio) came back and said I could get a transfusion next week and they could retest me next Friday. Next Friday to find out if I was going to go into hospital on Sunday??? I mentioned that my parents were waiting on this ok to get tickets to come over. Next Friday was very close and not very helpful.

‘Let me see what I can do’ he said and he immediately called back to champion my cause. He explained his clinic days, he pushed for me to get the transfusion that afternoon, he even offered a whole lot of alternatives to try and make it all work. What an angel, what a hero. I thanked him profusely.

I managed to get in for the transfusion on the Friday evening, and the new CPET was scheduled for the Monday. Slightly later than planned but not an absolute crisis.

—— Fast Forward to Monday ——

Most importantly, it snowed on and off for most of the day, which was I always love. Snow alternating with sun. Perfection. Must be a good sign.

It was nice to see them both again. This time my haemoglobin was up to 93. Still low but we cracked on regardless. Also the finger pricking hurt a lot less today! Weird!

First I was hooked up to an ECG to monitor my heart. Then, a sleeve to measure my blood pressure. Next, a little sleeve on my finger (sleeve may not be the right word there) to check my blood oxygen levels and heart rate. I got on the bike and sat there while they hooked everything up. Lastly, a mask on my face to monitor my breathing to check how much of the oxygen I take in and expel.

The guys talked me through everything and explained it all as we went which I loved. Once I was all connected, we started. I had to keep my legs turning at a constant pace – 60, but Jen, ever the overachiever, kept it at 70. It started off easy, with no resistance, then the resistance started to go up. Basically, I was on a never ending hill, and I had to go as far as I could. 10-15 minutes. I have no idea how long I went for.

MY LEGS HURT! Pretty much right from the beginning! I haven’t used them much for a long time. By the end, I was getting pretty puffed and my legs were burning.

‘One more minute’ nice guy #2 said. 1 more minute. Right, I can do that. So I pushed for a while. Then I got pretty tired. ’20 seconds’ he said. Then I swear about 20 seconds later, ’10 more seconds’. Cheeky.

For the last minute I was breathing heavy, and it was disconcerting having to breathe through a tube and not get fresh air. I was actually feeling a bit claustrophobic by it! Not actually panicking but a bit of the feeling that I got in the MRI of not being able to breathe. But I was ok.

Eventually I felt like I was about to crash, and he said to slow my legs, they were taking off the resistance. He thanked me for pushing that last bit and going a bit longer. He said it helped them to get better results.

Phew.

I recovered quite quickly after.

So the results of this test help to decide if I’m fit enough from surgery for next Monday. Hoping I get the results tomorrow!

Thanks David and Nick. I think I remembered their names correctly… What great guys.

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.

MRI Sundays

So it turns out I now have a problem with MRIs.

I guess I’m feeling a bit fragile at the moment. A bit emotionally unstable. In a big way because I’ve just found out I’ve got to cancel all plans for the next year or so. But also the fact that I can’t use my hands is getting to me. I struggle to tie shoelaces, I can no longer wear anything with buttons, even jeans are out. I can’t hold a pen or write… And there are a few other things that are all adding to the stress. Yeah I’ve got a lot on my plate to deal with, emotionally. And still recovering from my last chemo too.

Anyway. I had to go in for an MRI today. On a Sunday. Poor imaging people working on a Sunday. I usually quite enjoy MRIs. But this time I almost freaked out immediately when they first put me in. My heart started racing, I felt really hot, I felt like I was boxed in. I honestly felt like I had to break out. Hey claustrophobia, that’s what you feel like! I’ve almost felt it once before back in high school when we went caving and did one particular cave that was a tight passage going down to the cave and back up. B45 I think was its name. So unassuming. I didn’t have a problem then but I remember being on the cusp of thinking it could go either way.

I almost pushed the panic button early on, I really thought I couldn’t make it, but I managed to calm myself down when the MRI started. I never know whether it’s better to keep your eyes closed or look out through the little periscope peep hole. But I did some deep breathing and tried to stay calm. It worked for a while but then I started to stress out again. The MRI operator asked over the speaker if I was ok. I said I was stressing out a bit and they said they had noticed a bit of movement on the last scan.

They came in and pulled me back out for a bit. I had to stay in the brace and hold still but at least I could breathe for a sec. Deep breath in, deep breath out. Still feeling boxed in, wasn’t sure how I would deal with the rest of it. Still 15mins left.

One of the imaging girls offered to hold my hand for the last bit. What an absolutely beautiful person. I thought it seemed as bit silly to need it but I took her up on her offer. She said she had done it before, it wasn’t weird or abnormal. So we held hands and I went back in. Knowing the outside world was just there made a huge difference, it felt like I wasn’t actually that far away.

The other added, though unintended, positive of this hand holding is that I was concentrating so hard in not squeezing the hell out of her hand that it helped to distract me from the tiny tube I was confined in. One of the other bonuses of this peripheral neuropathy is that my hands have a mind of their own at the moment. They move around on their own and clench themselves of their own accord. So they were cramping up and probably clenching super hard but I couldn’t feel how hard they were holding, so I was concentrating pretty hard on that.

It also helped that the other girl who was doing the scanning from the other room gave me updates on how much longer I had to go. They also came in 5 minutes from the end to inject me with some dye so that was a nice little break too. Not to mention they turned the radio on and between the thumps of the scans, I heard ‘I’m Only Sleeping’ by The Beatles serenading me.

I got through it fine, but I don’t know if I would have if the angel of an imager hadn’t come to my rescue. And they were both so lovely and patient. They said to try and bring someone along with me next time just in case. I don’t know if it was just this time or if I’ve developed a problem but it might be a good idea to take a helping hand along next time – anyone feel like having their hand squeezed off for a while?

Updates and side effects

Lots of info here! Maybe not the most exciting post but hey, here we go!

On Friday I went in for my blood test expecting my haemoglobin to be low (they booked me in for a transfusion because they thought it would be. I was right on the borderline so… yay!!! Didn’t have to!!!), and expecting my neutrophils to be low too and they were hiiiiiigh!!!!

So that meant I could leave the house! And go into work eventually! Of course I still get exhausted very easily so it’ll be short trips.

I decided to go out to a friend’s birthday drinks for a couple of hours on Friday night, which was great fun though tiring. Took it pretty easy the rest of the weekend.

Yesterday I had my Gfr (Kidney test) to just double check my kidneys are in fact too damaged to finish my chemo. Mixed emotions about that, obviously. Interestingly, my dad said he found a study where they weren’t even using Methotrexate at all, and results were positive. Katrina also mentioned that in Oxford they’re talking about only treating sarcoma with 4 cycles of chemo anyway. Also interesting! So I’m sure it’ll be fine.

Anyway, what fun side effects do I have for you today?

My feet and hands are getting more numb. Looks like when the oncologist said ‘it might get worse before it gets better’, my body thought ‘ooh yeah! Ok why not!’ But the important thing is that it will get better. Not sure if it will recover 100% but I’ll get back to you in 6 months or so when it’s meant to start improving. It does some other weird things too. Like shudders this weird nerve twinge thing through my feet and arms. Particularly when I’m lying down or in the bath. Not painful, just unpleasant. I had to run for the bus yesterday and it was going all through my arms and legs doing this weird thing that I really don’t know how to explain. You know how when you’re exercising and something clicks weirdly? Not like cracking, just like something rubbing on something or clicking over something. It’s kind of like that. But nerve based. Weird. Sometimes I feel my pulse beating in my feet also, with this weird numbness coursing through. ALL VERY STRANGE FEELING. Holding a pen is getting difficult too. And I can’t feel if I step on something.

Let’s see if I can explain this next one.
Sometimes when my heart beats it sends shudders of pain through my chest and right down my back if I’m sitting down. From my shoulders down to my tail bone. Not like… Fear-of-heart-attack sort of pain I don’t think (though I’ve had that too). Just a weird like… Throbbing pain through my body when my heart beats. Weird. It’s not intolerable pain, but it does make me wince. That’s a weird one. It only happens sometimes but I’ll have a day when it does it regularly then stops for a while. It did it a lot yesterday, but only once today. I think it happens when I do things other than just sitting and resting. My pulse is easily elevated at the moment too. Another echocardiogram (heart test) to come soon, I’m told.

And as is to be expected, I’m exhausted. Most things exhaust me. I actually read the other day that this can be the case for like 2 years or so post chemo. And that it can take that long to build up any sort of fitness again. So that will be interesting. I’m definitely feeling more exhausted all of the time now though, before I would have good days and bad days. Now it’s just most of the time. It’s difficult because I’m usually so busy and active! But I’m getting better at letting myself rest. I keep thinking I need to push myself to go into work but that’s probably not really useful to anyone. So I will go in but if I’m not up to it… Well… I won’t.

Mouth ulcers too obviously. Always so fun. Currently on soft food though not liquids so hopefully this is as bad as it’s going to get this time!

Also injections are all done for this round, only 7 more to go after my next treatment! I never enjoy doing them, but with the excess anxiety about them gone, it makes such a difference! And it makes me feel like a bit of a boss everytime I succeed at one.

And I think that’s all for now!

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.