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.

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:

The roller coaster ride that puts me in the ward… then puts me back in the Cotton Rooms the next day… But now we need home tomorrow please!!!

So…

This is going to be a bit of a roller coaster. post.

This morning kind of went from bad to worse…

My hopes to get out tomorrow (Friday) in time for our Christmas lunch on Saturday were slowly to rapidly slipping away from me.

And my hopes to get out of the ward and back into the Cotton Rooms today appeared to have gone entirely. I was less worried about that, I just want to get out tomorrow! But they got my parents to go over to the Cotton Rooms (thanks parents, you are amazing), check me out and bring all my things over to the hospital.

So I met with my Oncologist this morning, well he came to visit me in the ward. And basically he thought they’d be keeping me over the weekend unless I did some super human, never-before-seen type Methotrexate clearing. And he said it’s possible (likely) that this is what I’m looking at for my final 6 Methotrexate treatments. Hospitals and weeks that drag out longer. Ugh more hospitals.

As a result, he also said we would be putting off next week’s chemo by a few days. Which means goodbye to all free weekends for the foreseeable future (until the schedule needs to be put off again).

I’m not going to lie, this was all getting me down. The thought of my last 10 weeks of chemo probably now being pushed out, maybe even for months. It’s hard to manage. BUT you know what? Last week I ran into one of my fellow Ambicare Crew (he’s in my next ‘people met so far’ post so I won’t give away too much right now), and he was having a bad week. Sure I was having a bad couple of weeks too. But he had received some bad news, and I can only guess, but perhaps he found out that his chemo isn’t working. Or there may be some other big complication that means his prognosis is not so good. It seemed somewhat serious.

In terms of that, I have had only good news the whole way. My chemo has worked, my scans have been good, I’m finally meeting with the surgeon in a couple of weeks.

Sure, it might take a bit longer, and yeah it will be frustrating and no it’s not what I want. But at least we’re still going in the right direction, even if it’s at more of a crawl. All that will sort itself out.

BUT I NEED TO GET HOME TOMORROW!

Anyway, then my blood results came back, and they were… good. Back to what you would expect for a Thursday! So but an hour after my parents packed everything up and walked it over to me, we were all packing it back up and walking it back to the Cotton Rooms.

So that is good!

I went back into Ambicare, and they think that result is borderline for clearing by Friday afternoon and getting to go home. BUT BORDERLINE IS BETTER THAN THE ‘NO CHANCE’ I HAD THIS MORNING!!!

Not sure what’s going to happen with next week, I was meant to go into clinic tomorrow morning, so I’ll just go and do that and see what happens.

I’ll still get a disrupted sleep tonight, with alarms and bathroom stops, but nothing like last night where people kept coming to shout at me about unimportant things that I’d already told them every half hour to hour.

Phew.

Once again, please cross all your fingers! It appears to have worked for getting me out of hospital by Tuesday last time (even though I had to miss my gig), this time we need to get out of here Friday afternoon. Please please just let me get out tomorrow afternoon. Whatever happens after this week will happen but please just give me this weekend, even if none others.

Transfusion Friday

Thank you to the person who parted with their blood and gave it to me. I didn’t want your blood but it turns out this time I needed it. Please don’t give me any nasties. I promise I’ll cherish it and use it wisely.

It’s a bit silly really isn’t it. I am ok with all these mental chemicals going into my veins but the idea of a blood transfusion scares me.

I mean it doesn’t really scare me so much… It does make me a little uneasy but it’s more just that last time they said I was close to needing a transfusion and I declined and managed to easily get my haemoglobin levels back up myself. I don’t want be to using a transfusion as a first line treatment. That blood can go to someone else.

But this time I tried and it’s not going up. I need the transfusion. Ok fine.

So thank you, whoever it was who shared some of their blood with me. I really do appreciate it.

I can guarantee that so far since it’s been going in, I have sung along to the following songs playing on the radio:

Billy Joel – My Life

Annie Lennox – No More I Love Yous

Seal – Kiss from a Rose

The Carpenters – Close to you

I hope the blood is happy with the songs, but if it is not please don’t blame me, blood – it’s just the radio. I promise to give you a good life resplendent in only good music. I welcome you with open… Veins I guess.

Acetazolamide, alarms and ONE THIRD THROUGH, BABY!!!

Let me tell you about Acetazolamide.

So I start taking it 12 hours before my Trex. Pills every 6 hours from midnight the Monday night just before I start. It protects me against Trex toxicity. Great. Love that. I’m onboard.But you know what the trade off is?

Pins and needles.

In my face.

And knee caps.

Faaaaaaace 

Aaaaand 

Kneeeeee caaaaps 

Lololol.

Ok so you can move your knee caps around and usually dispell it. Balls of feet too. Feels hilarious but manageable. But you can’t really move around the bits of your cheek and nose. It is disconcerting. And hilarious. And off putting. Mostly hilarious. But also so weird. Thankfully the Acetazolamide only lasts for 48 hours. But by that time you’re pretty happy to see it gone.

The last two weeks I’ve had some problems with my pumps being super sensitive. I mean I’m glad that there is an alarm to tell me if there is air in my line. But it doesn’t need to do it 3-4 times a week as it has been doing the last two. Prior to this stint it had only ever happened once. One of the times the alarm went off this week I had to take myself over the the main hospital tower at 9:30pm to get them to fix it. I had to leave the boys at the pub watching the football while I wandered over to level 16. The next day in Ambicare they just gave me a new pump as they had the week before and no problems arose after that.

At least I’ve had a shorter trip back to Ambicare each time now that I’m back at my beloved Cotton Rooms. And we were able to cook in the oven and eat our delicious takeaway Ramen in the dining room (which we have affectionately named the Cottonstaurant). Makes such a difference being back here. And omg I can have baths every day. I am in heaven!!!

Anyway I just got my all clear from blood test this afternoon and I am on my way home for the weekend! Back again next week for the mean drugs.

But guess what. Can you believe I’m now ONE THIRD of the way through my cycles??? Amazing. Not even a challenge!

Monday, 2.c. Final week of second cycle.

9:20 – First things first, downstairs to the blood people for my Monday blood tests.

Catch up on weekends. Be happy we have sun and no hurricane. Everything going so quick today, I guess because I scheduled everything earlier.

9:40 – Head upstairs. I’ve got about 40mins until my appointment with the Oncologist.

See Nicola the wig lady at the Macmillan desk as I walk past. Wave and smile. I like her.

Scan later today so only water. No food, no coffee, tea, anything. No tea???? Don’t they know it’s Britain? I’m already hungry.

Sit downstairs for about half an hour reading my Kindle, then check in.

10:10 – Up to first floor reception 2 when name gets put on the board.

Immediately greeted by name by the staff on the desks. Smile.

I would take a seat but there aren’t many and my eyesight is rubbish now because of… Well any matter of chemo things. So I hover by the wall to wait to see my name pop up on the board.

10:30 – Desk staff member comes and politely let’s me know the board is summoning me into the Oncologist room. Oh yeah. That smudge of writing just there… Could have said anything really. Apparently it says Jen. Thanks friend.

Make my way in to see my mate Dr. Vasilios.

Appointment takes the courtesy 5-10 minutes it does every week. He feels my face a bit which is nice and tries to tell me it hasn’t got any bigger. Well… Ok… I guess we’ll wait to see what the scans say – first one this afternoon.

I asked if I should have a flu jab, he said no definitely not. Not safe if you’re immune compromised. Deal.

He also looked at my iron levels and was like ‘wow so you did have the transfusion last week??’

Nah mate!!! I took some iron supplements and ate lots of red meat. YOU KNOW THERE ARE OTHER WAYS TO BOOST IRON OTHER THAN VIA A TRANSFUSION?? Wow. I need to teach these people a few things!!!

10:40 – Book next week’s appointment and put my name on the pharmacist list to see my friend Joe. Yes, everyone is my friend.

10:55 – Joe comes out and says ‘I’ll just get your tablets’ and I say awkwardly ‘ummm I actually already have them… Weirdly…’ So I went in. Neither of us know why I got given them the previous Friday but there you go.

He had a trainee pharmacist with him today. Hi. Joe tells me my Methotrexate levels for each day for the previous week and then we discuss important things like food and coffee. We explain to the new guy that I’m a coffee snob and that Australians created coffee culture. I’m sure he felt all the wiser.

11:10 – Up to Ambicare (what the cool kids call Ambulatory Care) for my observations and to have a quick hello. Confirmed that I am back in the Cotton Rooms. Hooray!!

11:30 – Still over 2 hours until the scan. So I wander over to Waterstones book shop just down the road to pick up a birthday gift for someone. Hope they like it. Books can be a gamble. 

(now I know how you all felt recommending me books!! But I love it! I’m making my way through them all, thank you! I will get back to you each separately).

11:45 – Sun is shining!! So I took myself out and sat on a park bench in the sun to read for a while. Windy… But the allusion of a beautiful day was there and I was happy! To be fair though I’m pretty much always happy. Insufferable.

12:45 – Made my way back to the hospital. Stopped via the canteen to get a bottle of water and some snacks for after I finished the scan and could finally stop fasting!!!

13:15 – Still half an hour early but I made my way up to Nuclear Medicine on level 5 of The Tower. All ready to start my PET/CT Scan. More reading while waiting, of course.

13:45 – They took me in and lay me on a bed, pricked my finger to check my blood sugar levels were ok, flushed my PICC line (mmm I love the taste of saline flush in the back of my nose/mouth. SO WEIRD) and I waited there a while. In the meantime I had some entertainment from two guys climbing up into the ceiling to try and fix a leak.

14:00 ish – the lovely scan lady/ nuclear nurse/whoever-she-was-I-liked-her (she can be my friend too) brought me my specially made injection and into my PICC line it went. I was told to lie still for an hour and not move any muscles. She was nice enough to bring me my headphones, water and a blanket and I listened to Desert Island Discs (amazing BBC podcast definitely worth listening to) while I waited.

I may have had a little nap too, it’s hard to say.

15:00 – I was told to go to the bathroom and meet them in the scan room and they got me all strapped in and ready to go. Metal all off (Haha no more piercings to get in the way!!! Just my metal jeans button… Had to drop my trousers to my knees…), and loaded up with two blankets I was ready to go.

The next half hour or so passed with me being colder than I could possibly remember (do they have to keep it so cold? Maybe the big machine generates a lot of heat…) and listening to some amazing 80 music that was being played in the room. The machine I was lying in this time was quite comfy (the last one hadn’t been) so had it not been so freezing, I would have been quite comfortable!

Regardless, it passed quickly enough.

Quick check that the scans had worked properly and off I went!

16:00 – I went and checked in to my home away from home (The Cotton Rooms) and got comfortable. I ate the snacks I bought. They were welcome after having fasted from the previous night.

Charlie messaged me to say his football game was cancelled so he would be back at normal time, which was fantastic news for me.

18:00 – I took the first of pre-chemo pills and Charlie got in not long after.

19:00 – we popped across the road for burgers at Honest Burger. I wasn’t so taken by mine even though it’s the same as I always get (beef and Stilton yum) but I ate it all because… You know… Iron…

And then it was pretty much time to chill for a bit and go to sleep. All ready to start the big guns on Tuesday – 3L of water (backpack) between 8:30-12:30, 4hours of my yellow friend Methotrexate in the afternoon , then I’m sent off with my 3L of water to get me through until 12pm the next day!!! It’s all go.