Chemo no 73

Chemo is such a long hard slog. I’m now more than half way in but there are still far too many weeks to go. The drugs are working and my cancer is now stable which is brilliant. It makes the treatment so much easier to deal with.

Apparently I’m coping well. By this point most other women on the same regime take a break. I was determined to push through and get this finished as soon as I can. Although now I’m not so sure.

Part of coping with chemo is accepting this new reality. You can’t live life like you want to. But it’s so boring. You’re too knackered to do much.

One thing I do occasionally is to draw flowers. Like those above. Focusing on the tiny details of the flowers helps me to forget about the bigger picture.

The worst side effect is the tiredness. It’s just horrific and relentless. Most days I’m just wiped out. Often my body is exhausted but my mind isn’t. It’s frustrating. You want to do stuff, your brain tells you can do things just like you used to but physically it’s impossible.

The trouble is that I now have  a dangerously low level of magnesium. My latest blood test result for it had to be double checked as it was unbelievably bad. As my body can’t retain it and the toxic drugs only make this worse theres not much we can do other than regular mega dose drips of magnesium.

The chemo also has an impact on my already rubbish digestive system. I’m on a low fibre diet anyway. I eat hardly any fruit or vegetables. Due to all the treatment I’ve had my body can’t cope with anything which is too hard to digest but now I have to be even more strict. The other week I ate part of a peeled raw tomato. Bad choice. It made me vomit for a couple of days. I know it sounds ridiculous that something so innocent, something healthy can make me so ill.

Generally most people having the treatment are exhausted and this is made worse by the cancer killing drugs. Chemo is often a long, dull day sat in a room full of ill strangers. So it’s understandable that you do what you can to pass the time.

Phones are great for entertainment but recently everyone on my ward had to put up with a visitor playing lots of video clips out loud. At the time all the patients including me were trying to sleep but with each new clip I woke up. I’ve even sat next to someone who talked to a friend for half an hour with their phone on loud speaker. I mean seriously, do you think any of us wanted to listen to both sides of your boring conversation??

Please, please don’t put your phone on loud speaker on a chemo ward, use headphones instead. Otherwise you’re just being selfish.

Okay, rant over. Did I mention that chemo can also make me quite bad tempered!

Spoonfulness

Wow it’s been a while. So hello again!

I haven’t been writing for the past few weeks or so as I’ve just been incredibly tired. I’m still short of magnesium. Stupid, stupid magnesium. Ever since January when chemo ended I’ve been having a weekly IV drip of the stuff. Hours of being hooked up to a machine on the chemo ward. There’s been no escaping that place!

I’ve gone from having almost non-existent levels of magnesium to having half what is considered normal. Thats where it’s stopped. For ages my levels have refused to budge. Here’s the irony….having chemo depleted my stores of magnesium so I need more but because of the chemo my kidneys can’t retain it.

It’s so very frustrating. Plus on top of the exhaustion, it also causes muscle weakness and cramps.

With limited energy I have to be quite selective about what I do and how I spend my spoons. I’ve mentioned the spoons before. When you have such fatigue it helps to think of what energy you do have as something tangible like spoons. You only get so many spoons a day. Sometimes none at all. There has been a severe spoon shortage just lately and so I’ve been using them sparingly.

I have used some spoons on exciting things. Hopefully soon I will blog about what done from my List for Living but have been too tired to write about!

Chemo #3

I didn’t realise it at the time but I think that it all started to go wrong with the chocolate milk. The night before my chemo I forgot to have my usual glass of cold, sweet milk. I read somewhere that it helps you prepare for the onslaught of cancer-kicking chemicals. Not sure how much science there is to that but it’s a comforting routine.

It was dark when we set out for the hospital on Tuesday morning. My aunt Judy was driving us. She was a games maker driver for the Olympics so I knew I was in safe hands. But the miserable weather and sloooooow traffic jams seemed determined to conspire against us. Then I remembered about the missed milk. I knew it was going to be one of those days.

When we arrived I noticed that the room on the chemo ward, which was to be my base for many hours ahead, had a stopped clock. That just about summed up how I felt.

If you’re not ill, you may think that its terrible what I’m going though. It is. But I also get to see the other side. At hospital there are many people who are far worse than I am. Clearly it means that there are sometimes emergencies and delays which can’t be predicted. I don’t mind waiting, I’m just relived that its me left sitting there, instead of causing the consultants to come rushing off through the corridors.

I was told that my blood count was really good. It means my body is coping with the savage chemo regime and my immune system is recovering well in-between the sessions. The only problem is with magnesium. As always, it seems, this is far too low and I needed a bag of it via the IV drip. That added on another two and a half hours before the chemo kick-off. And so it went on.

But there was no drama for me, thankfully. Instead I had wonderful friends to entertain me who brought cakes, presents and gossip from the outside world. I feel so very lucky to have the support of lovely family and friends.

And I’ve saved the best for last. I had my first set of test results since the start of my latest lot of toxic cocktails. Big drum roll…..They show that the chemo is working!!!

After just one session of chemo, the tumour marker tests called the CA125, has dropped by a quarter. It’s amazing news and will help me get through all the horrible side effects to come. I’m already half way through my treatment. Just three more to go. Hooray!

Back home after a marathon 11 hours at hospital, I finally got that cold glass of chocolate milk. It was a sweet celebration.

Oh, by the way, happy 100 to me! This is my 100th blog post. I never thought I would do so much blogging. But continuing to blog means that I’m still here and still going strong. Thanks for reading and being there for me.

Chemo#10

You know what it’s like, you’re on your way back from a long holiday or a work trip. You’re knackered, feeling a bit grimy and all you want to do is get home. You don’t want to have to negotiate an airport packed full of people also trying to do the same thing and you desperately hope that you’ll get a decent seat on the airplane.

That’s kinda what chemo #10 was like for me.

Now I’m into double figures, which is amazing, I’m more than half way through my treatment. I’m homeward bound. But the journey back is proving a bit tricky.

My chemo cable – delivering the anti-cancer drugs

I was at hospital on Wednesday with my friend Louise. When I was having chemo last year, she arranged for a load of friends to go to see Kylie Minogue in Hyde Park. The concert was very soon after my treatment finished. It was something lovely to look forward to. So having Louise there for chemo coffee made me think that it’ll be all over soon.

After last week when I got my own room, I hoped it would go just as well. Ha! I’m far too optimistic sometimes. This week was incredibly busy. There were more patients and less staff than usual.

At the chemo unit there are a number of wards where you can have your treatment. Aside from the private rooms, each ward holds about six people. Three along each side. Some people are more squashed in than others. Just like the worst seats on a plane that you really hope you don’t get allocated, I was slap bang in the middle of the smallest row. If I reached out my arms , I could easily touch the people on either side of me.

I know it doesn’t seem like a big deal but I was going to be stuck there for hours, in-between patients who were twice my age, in a chair that wouldn’t recline. As you can imagine I wasn’t in the best of moods. Luckily Louise helped to lift my spirits.

Mmmm magnesium

We’d turned up an hour early but there was still a delay before take-off as it was so busy. Once we got started I needed a couple of hours of magnesium. Watching it drip into your veins is frustrating. In a weird way, I always can’t wait to get going with the bad stuff.

Having the chemo itself took one hour however I spent six long hours in total in that horrible chair sat far too close to sick strangers.

I’m so glad that there are only eight more sessions to go. In the time it’ll take, I could probably fly right around the world and throw in a few stop offs. But I’m not going dwell on this. I know that this treatment is giving me extra time so that hopefully in the future I‘ll be well enough to go off on my own foreign travels.

Chemo#9

It was a room without a view but I wasn’t complaining. Once again I’d been upgraded. I had my own private room. It came with a bed and an isolated sense of calm. Stark and clinical, it was such a contrast to the country pub where I pulled a pint from my List for Living, a few days ago.

I knew I was in for a long afternoon. My magnesium levels have got so low that I needed to go on a drip of the stuff for two and half hours before I could even start the anti-cancer drugs.

Luckily I had company. My friend Keith came for chemo coffee although it turned into chemo coffee, lunch and tea. He was well prepared. With sushi and sandwiches and cream cakes, he laid on a hospital bedside banquet.

When I’d walked onto the ward earlier, I hadn’t really looked at the other patients. In my little room, Keith kept me entertained with a laptop stuffed with movies. It felt like a lovely lazy afternoon albeit in slightly strange surroundings. I could almost pretend that I wasn’t being pumped full of poison. Normally just being there, surrounded by sick people and all the medical equipment means that you focus on the cancer. It’s hard to avoid it.

Yesterday I also had a visitor – a fellow patient from my previous lot of treatment last year. We had got to know each other quite quickly as most of the other people at hospital are about twice as old as us. My chemo sister is totally fab-u-lous. She is positive but pragmatic and ensures that she looks amazing at all times. Something that takes an admirable effort.

My chemo sister came to see me with something sweet. A sparkling chocolate cake that she’d baked herself. Me and my steroids were very happy to be taking home that beauty.

By the time I was unhooked from the drip, the ward was almost deserted. My session at the chemo cocktail bar had left me a bit dizzy and almost like I was drunk. Probably thanks to the pre-meds.

I also felt surprisingly well. I reckon that was mostly because of my afternoon with friends and the chemo-cake-therapy. Despite the hours of treatment, it had been easy to forget about the cancer. Sometimes a little dose of denial isn’t a bad thing.

Chemo#6

Despite a busted thumb, Chantal, my friend the flower girl, offered to drive me to hospital in her van. Although she looked like she was the one who needed treatment and not me. Chantal apparently dislocated her thumb while doing some extreme gardening. Who knew that potting a plant could be so dangerous!

Before chemo we met for lunch at a local pub. There we spotted something unusual on the menu – homemade tonic water infusions. They were kept behind the bar in giant coloured glass bottles with labels written in biro. Designed to be served with gin, the tonic had been infused with things like celery and lemon, cucumber and mint, green tea and pickled ginger.

Tempting as a G and homemade T sounded; I knew that my body would soon be awash with poison so thought it best not to try one. What I didn’t realise is that it wouldn’t be long before I’d get my very own infusion.

It’s been another tough week with plenty of side effects. An almost constant nose bleed, mouth ulcers and a sore throat. Oh and of course, tiredness. A few days ago I felt so shattered that I wasn’t sure if I could make it out of the living room to bed. I desperately wanted to lie down but I feared that if I stood up I’d collapse. Thankfully I did make it to bed without any drama.

An afternoon of deep sleep later and I was feeling better. I didn’t think much more of it. I try not to dwell on the awful stuff. I’m glad that I still have options even if that means a bit of pain and getting through lots of bloody tissues.

There are some side effects that are easier to hide. My hair is just about starting to fall out, again but because the chemo is weekly I shouldn’t lose it all at once. While I still have some left I’m enjoying not wearing a wig every day. My hair is super short hair and when it’s cold outside I cover up with a hat. Even when there’s a beautiful blue sky.

As the chemo cocktail bar is well heated and then some, I left my hat in Chantal’s flower van. Before the treatment can start your blood is tested to check how your body is coping. I was told that I was well enough to continue but I’m low on magnesium. Ahh, that makes sense. It explains all the fatigue.

As always I was hooked up to a drip and promptly went straight to sleep. I woke up just as the chemo finished and was given another bag of clear liquid. This was a magnesium infusion. It wasn’t in a fancy coloured bottle or quite as nice as a proper drink but hopefully the effect of this hospital tonic should give me a boost that lasts for days.

Now that chemo#6 is over it means that I’m one third of the way through my treatment which is brilliant. I now know that I’m pretty much able to deal with the cancer-killing drugs. It feels like the right time to start focusing on the future. However long that may be.

So I’m finally finishing my List for Living. I reckon that I’ll do a post on my new list towards the end of next week. In the meantime I’m looking for some examples of inspiring bucket lists. If you’ve seen any great ones I’d love you to leave a comment for me. Thanks x

My last chemo. Ever.

Whooo hoooooo! Finally it’s over. Yesterday I completed all my cancer treatment.

The day started well. On the ward you usually have to share a room with three or four others but I got to turn left instead of right as I was given my own side room. In the world of cancer having the superbug MRSA gets you an automatic upgrade.

My friend Tamsin came with me to the hospital. She may not be having chemo but as a surprise and to show her solidarity Tamsin wore a vivid purple wig. Normally part of a fancy dress witch outfit, it was almost like Halloween had come early! Seeing her fake almost florescent hair certainly helped to ease my anxiety.

As it was such a big day I wore my Candice wig for the first time. She’s reserved for special occasions and it was certainly one of those.

I’m still getting used to wearing a wig again. They’re quite hot and itchy even when you wear a wig liner over your head. My wig liner looks like a foot has been cut off a pair of American tan tights. It has a snug fit. Pull it down over your face and you look like you’re ready to do a bank job. After a couple of hours I had enough of the wig and ditched it in favour of a headscarf.

My friend Chantal, the flower girl spent the afternoon with me. She didn’t bring a wig instead she borrowed Candice. Seeing it on someone else was quite surreal. It’s such a massive WAG wig – I’m really glad I picked it!

I was so excited that after six months of treatment this was my last ever chemo. The hours seemed to speed past in a blur of coffee, cake and thinking about James Bond. It was his final tour of duty for me. Maybe one day I’ll be able to thank Daniel Craig for doing such a great job. Every chemo I have imagined that a whole battalion of Bonds were shooting the tiny but deadly cancer cells inside me.

As always I had several bags of cold clear liquid slowly dripping intravenously into my veins. Then at about 4pm it was all over. No more evil chemo cocktails. We punched the air with delight. I finally got to flick the V sign at cancer. I said goodbye and farewell plus other choice words beginning with F.

Now I had officially beaten this killer disease.

But I couldn’t go yet. The chemo is so dangerous that it doesn’t discriminate between the good and bad stuff in your body. It’s now destroyed my magnesium levels. To stop side effects like numbness and tingling in my hands I had one last bag of liquid to give me a magnesium boost.

By the time it finished it was past the opening hours of the ward. Some of the nurses had already changed out of their uniforms ready to go home. They didn’t look like medical professionals anymore. As I walked out I realised that they would no longer see me in the same way either. I had stopped being a cancer patient.

Outside the fresh evening air somehow seemed much more wonderful than normal. It was an incredible feeling to leave that chemo unit and know that I wouldn’t be coming back again to have my veins filled with poison.

Dad and I headed for the car park. We went past a small square of grass surrounded by wooden benches. This is where you go for a quiet cry. It’s what me and my cancer fighter friends call the garden of tears.

But at that moment I was full of joy. The days of needing this hidden green space felt like a lifetime away.

As we drove us back to the countryside, the sun was starting to set on what had been a brilliant day. The dazzling weather on the motorway home matched my mood. The sky was ablaze with dusky pinks and gold that stretched all across the horizon. Enjoying the view it suddenly struck me – now I’m really going to live.