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#13

I quite like Mondays. It’s the start of my super short week. I’m now so incredibly tired that my week only lasts for two days. Basically I feel sort of normal on Mondays and Tuesdays, and then the treatment begins again. Weekly chemo feels relentless. I’m spending most of my time in bed. I just want it to end. Last week it nearly did.

A couple of days before I was due to have chemo#13 I thought something I hadn’t thought before. For a few brief moments I decided that I didn’t want to continue.

I felt so ill and frustrated by the horribleness of it all. It’s not just the toxic drugs that are so awful but all the other stuff too. Last week I spent around 12 hours over three days at hospital with scheduled appointments, procedures and tests.

When I woke up the next day after the wobble, my symptoms seemed to have faded a little. I wasn’t so exhausted and I knew that really didn’t want to end it early. Even so I came up with a list of pros and cons. I realised that there is only one thing that matters, it’s first on the list and outweighs everything else.

CHEMO PROS

*It’s hopefully helping me to live longer

*Chemo makes me feel that I’m doing something to fight the cancer

*Somehow it makes my skin glow. I know this is totally ridiculous but everyone tells me that I look really well when I actually feel so ill…

CHEMO CONS

*Extreme fatigue, most days I’m close to collapsing

*Lots of random pain all over my body, especially in areas that I’ve had surgery

*Fingernails and toe nails hurt and feel like they’re going to fall off

*Fingertips are a bit numb, meaning I’m clumsier than normal

*Painful pins and needles in my feet and hands

*Breathlessness, I can’t really walk and talk

*Painful to walk and I can’t exercise like I used to

*It’s making my hair fall out

*My eyes are watery and sticky as I only have a few eyelashes are left

*Constant bleeding nose

*Comprised immune system and I could end up dangerously ill if I get an infection

*Steroid induced mood swings

*Insomnia

*Disgusting taste in my mouth

*Dizzy spells

*Bloating

*Always starving thanks to steroids

*Chemo weight gain

*Mouth ulcers and sensitive teeth

Now that’s some list. The treatment is truly horrific. You need to be totally convinced this is what you want. I am but it doesn’t stop me from sometimes pretending that it’s not happening.

Before chemo#13 started there were lots of things I had to do at hospital. They required me and mum to navigate the confusing corridors which link the mass of buildings together. On our way back to the ward we made a break for freedom!

Instead of following the signs we left the hospital for an outdoor detour. The morning sun warmed my skin and I felt amazing. For a moment I wasn’t a patient. I was someone out for a walk with their mum, trying to convince us both that we weren’t lost.

As we weren’t that lost, it was soon back to reality. It was the first time I’d faced the toxic drugs after questioning whether I wanted to carry on. As I was hooked up to the drip I knew I wanted to continue.

Some people have been in touch with me on the blog to say that their elderly relatives are refusing to have anymore chemo and they don’t know what to do. I can only really talk from my own experience.

For me the most important thing is being able to have a good quality of life. Aside from the cancer, I’m a fit and healthy 41 year old. I feel very resilient. Despite the long list of chemo cons, I’m lucky that my body is capable of withstanding the treatment and I’m coping well. However, I know that I’ll probably need more and more evil chemo cocktails after this course finishes and in the future I may feel differently. There may come a point when I decide that I’ve really had enough.

This is such a personal decision. I’m convinced that I’m doing the right thing. I feel that I have so much to live for. Whatever it takes, I’m going to make it through the remaining five sessions of chemo.

Disco dots to the rescue?

When I first started this blog back in March I wondered if I’d run out of things to write about but somehow that hasn’t happened. Well, not until last week.

I felt worn out. I had bursts of energy but they tended to quickly fizzle out after an hour or so. Most of the time I was so tired that I wasn’t able to think about much else apart from getting through each day.

The chemotherapy may be over but I seem to use up much of that energy on medical appointments in London. The surgery I had to get rid of the cancer was extensive and it’s caused me plenty of problems. Nothing too serious, just stuff that needs sorting out.

Of course experiencing all this fatigue is frustrating but pretty normal. Last week, one of the doctors at hospital said I should think of cancer treatment as like running a marathon. You focus on just getting through each medical mile. Exhaustion is just one of the many horrendous side effects. It’s only when you stop that it really hits you.

Weeks after crossing the chemo finishing line it still feels as if I’m sitting on the pavement covered in a silver foil cape, too shattered to move. I want to have a normal life instead of watching it pass me by.

The doctor suggested that I keep a tiredness diary. I was supposed to write down everything I did for a week so I could see if I was doing too much or too little. Each day was divided up into two hour chunks.

I started the diary on Wednesday and gave up on Thursday. It was far too depressing. It made me realise that at one point I was in bed for 17 hours in a row.

So I tried something else.

I gave acupuncture another go. It was one of the things that helped me cope with being poisoned by the toxic cocktails. I still don’t understand why it should work but several of my cancer fighter friends have said that it’s really given them a boost after chemo.

With a checked shirt and a silver hippy necklace, the acupuncturist took my hand as soon as entered the room. He was trying to establish my energy flow, I think, or something like that. I tried not to look too sceptical but he just smiled at me serenely

I lay back on the couch. Through a window in the ceiling I watched clouds slowly drift overhead as he stuck the skinny pins in my hands and feet.

Black dots began to dance in front of my eyes. The spots weren’t in the sky but some kind of optical illusion. Last time I had acupuncture loads of these tiny blobs seemed to rush across my eyes like a river. Now there wasn’t so many of them. These spots did a kind of side to side shuffle. It should have been quite freaky but I felt calm as I concentrated on the disco dots.

After about twenty minutes they disappeared and in their place were tiny white flickers of light that flashed frantically.

“Do you want me to do something that will really get things going? It’ll be painful to start with,” he warned.

And it was. Long needles were pushed hard into my thumbs and big toes, right near to the nails. Really big misshapen spots appeared and slowly swam across my eyes. This mirage also faded after a while.

I’d like to say that I walked out of there with a spring in my step but I didn’t. Instead I went home for a rest and then got the last train back to my parents’ house in the countryside.

That night I had the best sleep in a long time. I woke up to find that the extreme tiredness had gone. It was like someone had just flicked a switch.

Since then it’s been incredible. For the past few days I’ve felt energetic, alert and much more like me again. Okay, I’m no where near back to normal but I’m able to do things like walk without feeling as if I might collapse.

Why the sudden change? Maybe it was the acupuncture. The disco dancing dots. Perhaps it was being back with my parents.

Whatever it was, I don’t care, I just hope it lasts.

Time for tears

Something is missing. There is a cancer shaped hole in my life.

Don’t get me wrong, of course I’m incredibly relieved that it’s all over. It’s just that the past six months have been all about the illness. There was a routine to my life, structured with appointments, chemo and hospital stays. Perhaps most importantly I had a clear goal – to beat cancer.

After such a terrifying diagnosis, there was something I could do to try to make it go away, something that gave me back a feeling of control. I was a mean cancer fighting machine. The process gave me a sense of purpose. It dominated my every waking moment.

Then, one day, it was all over. The treatment stopped. I got the official all clear, the perfect ten.

I know I’m extremely lucky to be cancer free. All I have to worry about these days is recovering from the ordeal and getting on with my life. But it’s not all over, not really.

First all, I’m still ridiculously shattered. Or to be more correct, I have fatigue. No amount of rest or sleep makes any difference. Even my bones feel exhausted. Yet I’m attempting to get my normality back and that’s only making me even more tired.

Slowly the chemo fog is lifting. My brain has all sorts of ideas of what I could do but my body usually says no, plump up the cushions and sit back down. I still have some medical appointments but I’m not nearly as busy being at hospital as I was.

It all means I have much more time to think and reflect on my illness.

When you’re told you have cancer it’s a shock but it’s also an emergency. Very quickly you focus on the treatment. It’s a brilliant way of channelling all that anger, upset and fear.

Now the chemo has finished, it seems like my emotions are catching up with me. The enormity of what I’ve been through is starting to hit home. I wasn’t expecting this big, delayed reaction as it didn’t happen to me before. But then it was much more serious this time.

My feelings that were squashed for so long have bubbled up and are now never far from the surface. I’ve cried more in the past couple of weeks than I have done in many months. One moment I’ll be thinking about the surgery or something awful connected with the cancer and then all of a sudden it’s hard to hold back the tears. Often though it’s stupid things that make me cry.

It’s not that I sit around weeping all day. Most of the time I’m actually quite happy. Just like the sickness, the extreme tiredness, the pain, the scars and the hair loss, I’m realising that the tears are another awful but normal side effect.

Anyway, afterwards I feel much better and I suppose that’s the whole point.