Meh!

That was awful, dreadful, painful, disgusting, appalling, degrading, unpleasant, ghastly and unfortunately has to be repeated three more times.
So how was your weekend, and Monday and Tuesday? I sincerely hope it was better than mine.

Pic borrowed from http://mildly-amused.blogspot.com/2010/10/blargh.html

I do know where I went 'wrong'. It's managing the meds again. This time it was managing my laxatives versus increased doses of another medication. Chemo does not come with training. There is a lot of information but no manual. We have access to excellent advice via the chemo nurses. The problem is that 'trouble' can sneak up on you. This is why it all went so wrong this weekend and the fuzzy muzzies are to blame again! Basically I was so out of it and nauseous that I did not take enough laxatives. The consequences, the details of which I will spare you, were dire. Today, I am a shadow of yesterday's self, and that is a very good thing. Mind you, I did have a rather disturbed night, if you get my drift.
Back to the drawing board again - I'm going to need a meds organisation kit the size of a filing cabinet.
Where do I get the motivation?
The intense desire to avoid the disaster that was the last few days ever happening again.

The fuzzy muzzies...

I am blogging from the depths of the fuzzy muzzies. They are not as bad as they can be as I 'think' I am making sense and the letters are in the right order. The fuzzy muzzies (aka chemo fog) are very trying. The world becomes a bewildering place. When at their worst, they cause such a slowing of brain function that I can quite literally not know what is going on. The tv is only moving images, I cannot follow what is happening. A book is merely a collection of black marks on a page. I cannot extract any meaning. A question takes forever to answer, because processing the request, then an answer is a labourious effort. I fear I must look entirely witless on occasions. There are many medications (including some I am taking now) that say not to operate machinery or drive whilst using them. Chemo should come with such a warning. I definitely cannot drive, I'm not sure I'd be safe out alone either. When at their worst, the fuzzy muzzies drive me to bed. A dark quiet room removes the mental stimulation that cannot be comprehended, making the world feel safer. The fuzzy muzzies last about 72 hours before they fade.

So when I say , sorry, I can't manage to do that soon after a chemo session, the fuzzy muzzies are why. Add in possible nausea, weakness, and bone numbing weariness and severe joint pain and you'll understand that 'chemo week' is a bind, a grind and something to be endured. See you at the other side.

An act of courage...

Lovely people tell me that I am stoical, resilient, awesome, amazing, great and many other undeserved epiphets. Why do I think they are undeserved? My view is that I'm just getting on with things, doing what has to be done. Us chemo patients do have a choice. We are strongly advised to undertake, what in my case is called adjuvant, chemotherapy (belt and braces chemo!). We sign a consent form. At the time one signs the form, knowledge of what is to come is purely theoretical, although a LOT of information is given. It is not until you sit in the chair and have the cannula (needle) put in the back of your hand, that there dawns a sense of inevitability. The procedure will happen. At the first session all is new and scary, but you don't know what is to come. At my second session, I no longer felt like the new girl. I knew the procedure. I had mastered waltzing with with Percy. Happily, I had had no really nasty side effects after the first session. I was, perhaps, a little complacent.
I have blogged about some of the events of chemo cycle two, I will add it was grim. I had a hard time for perhaps 16 days out of the 21 days of the cycle.
Today, when I saw the doctor and they told me the wonderful news about my Ca125 test (cancer marker in blood indicating Ovarian Cancer in some cases, it did in mine) was down from 102 to 13. Normal is 0 to 35. I was very pleased but then had a meltdown. I realised I still had four more cycles to go. They 'could' all be as awful as the last one. After talking to my Macmillan Nurse and the doctor they reassured me that I was doing really well, that they were extremely pleased with my progress. But I was still scared, worried and anxious. My hands were shaking.

As I went up to the chemo suite, I went with trepidation. But I went, I sat down. I had my chemo. You can say I was brave. It was my act of courage.

A sharp scratch...

Over the last six months I have had a lot of experience of what I might call medical/surgical understatement. The title of this blog is possibly the one most frequently met by the average person. The 'sharp scratch' preceding a blood letting experience is shorthand for 'I'm about to stab a sensitive part of your anatomy with something extremely sharp'. When I was being diagnosed, one leaflet warned me that some women 'may' find this procedure uncomfortable. I was advised to take 'whatever you take for a headache'. All I can say is that if I had a headache that bad, I'd have been begging for the guillotine or a vat of morphine!
Before my surgery I was warned that I 'might feel uncomfortable'. No sh*t Sherlock! My lovely nurses (they were REALLY lovely) kept telling me to relax my tummy muscles. Now these muscles had been cut from umbilicus to pubis (tummy button to lady garden) and were in a total strop, they were really fed up, and so was I. It took quite a lot of painkillers to shut them up! We felt more than discomfort.
Now I'm on the chemo, things have changed a bit. I am now warned of 'possible side effects'. I have 'the little red book' in which to record my symptoms. Each cycle of chemo has a separate two page spread.

The possible side effects are listed down, with a grading symptom from none, mild, moderate, severe to very severe, across. At first glance the list of side effects that fill the rest of the table scare the chemo patient to be witless. Once you are in the swing of chemo, it starts to make sense. So far I have only had two very severe side effects and one of them was my hair falling out. That only happens once.
The rest of the side effects wax and wane over each cycle. In my experience so far, most things last part of the cycle but not all of it. Although I do feel tired most of the time, many of those close to me would say, so what's different?
Work tired vs chemo tired. Give me work tired any day.
Now, don't fret dear Reader, I am given medicines to cope with the side effects and as long as you remember to take them, they do work. I have medicine to stop me being sick (3 sorts), to help me to poo (3 sorts), things to stop me pooing (1 sort) mouthwashes for sore mouth (2 sorts) meds for pain (1 very good sort). If I remember them I can shake, rattle and roll. But mostly I stay in bed for a while.
So what's the moral of this story?
My advice would be to take some advice with a pinch of salt. A LARGE pinch of salt.

Unexpected pleasures...

Sometimes when something awful happens in your life, you find out who your true friends are. Sometimes people find things difficult and don't know what to say.
I am hugely blessed in that every single one of my friends has been hugely supportive, even if half the world away. I've already blogged on the internet and how it keeps me connected. Today, we had an open house. We had organised a Treasure Hunt for family and friends, followed by a barbeque cooked by Mr G. We had originally planned the Treasure Hunt for New Years Day but the weather was too bad. Since then of course, I've had my surgery and now started on chemotherapy. All the people we expected arrived in East Northamptonshire from as far afield as Sussex, Norfolk, Suffolk, Notts, Warwickshire and Herts. I was thrilled to see so many friends who had travelled so far to see us. We already had family staying. All those participating set out for the Treasure Hunt, a number of us stayed behind and nattered, laughed and had a drink or two. Of course people asked about what's been happening because I had not seen them from ages. But generally today was about fun and laughter. It has been about teasing, old jokes, wordplay, seeing who can make the biggest bubble with the giant bubble blower, eating too much and maybe drinking a little too much pear cider. That might have been me! So I can hear you think, what makes this so special. Today was great. Today was about fun, and friends, food and drink.
Cancer was NOT allowed to play.

I'm fine...

Honesty they say, is always the best policy. However we Brits are also polite. The required answer to the enquiry "How are you" is generally "Not so bad, and you?" or " Fine, and you?" This was all very well while I still had hair and a relatively healthy complexion. Obviously those really close to me can tell if I'm fine or not quite quickly.
Last week, on a good day, I went to a town where I used to live to see friends, frighten my hairdresser (more later), and run some errands. The friends know me well enough not to bother to ask how I am generally. They were specific, direct and very refreshing. After my visit, I was wandering down the High Street when I spotted a friend from the past. I called a greeting and she came over. She said "How are you?" and I automatically answered "Fine...". This delightful lady, known for her directness, laughed and declared "You are obviously not fine, what's going on?" We chatted for quite a while then about what was up with me, our children, grandchildren all the things ladies of a certain stage of life chat about.
Our encounter made me think though. I do not want to bore people with a litany of my ills, which are many and manifold. I also do not think it's fair to minimise what I am going through. Just because I choose to make light of my condition ( my way of coping) does not mean that I am always fine. Where is the honesty in pretending all is well if it is not? I have set out to be honest and candid in my blog. It stands to reason that I should try to be so in my daily life. So thank you R, you opened my eyes. In future I'm going to say "Today I'm sore, but I'm dealing with it", or, "Today I am fine, today is a good day". That will be the truth.
What did I do to frighten my hairdresser? I walked in, whipped off my sunhat, revealed my bald pate, and said " Can you do anything with this?". To her credit she laughed and said "It'll grow back and then I'll do something with it" I laughed until I cried. Honest!

Image from http://fyzzed.tumblr.com/

Alone but not lonely.

Having been off work for three months already, I have had to become used to long periods at home alone. I'm lucky as Mr G works in a school so has school holidays off, this has meant that I have had some respite. It was incredibly difficult coming to terms with a life without the routines to which I was accustomed. When I was recovering from surgery, I was restricted by my limited strength and stamina. Now, while I have chemo, I am restricted by the effects and demands of the regime. So, what do I do to pass the time? I am quite capable and able to undertake household jobs and errands during two weeks of my chemo cycle. I struggle during the first week, when my muscle strength is affected. It was quite upsetting to realise I could not even chop an onion!
My lifeline during the last three months has been the Internet. There are unkind souls who suggest that I might be addicted to my facebook games, but they do provide a free, easy pastime. Aside from the games aspect though, I have a lifeline of company through facebook and twitter. I have 'virtual' and real life friends all over the world. This means that there are people to talk to 24/7. I use facebook and twitter in completely different ways. Facebook is for games and for exchanges with people who are in the most part people I know in real life. I chat with colleagues and family, it feels for all the world that we are just chatting about day to day stuff. Twitter is very different - my interactions started first as a professional learning network for my work as a teacher. Gradually this built up, then some of the initially professional contacts became friends, with whom I have 140 character conversations about all kinds of topics from the domestic and bizarre! I now have 185 people on twitter with whom I interact on varying levels. The psychological importance of being able to keep in touch with education and educators during an extended period of absence cannot be overstated. Since I started blogging about my fight with cancer, I have gained new contacts through twitter and my blog. Some of these are people I interact with daily, some only once in a while.
I am also taking the opportunity to read while I have the time. I must admit that I am indulging in 'easy reading'. I can't cope with anything too serious or emotional so my bag comes back from the library full of chick lit and whodunnits! These all take me out of my living room and into other places and countries with engrossing characters. If a book does not grab me by the end of the first chapter it goes back to the library! I tried audiotapes but I tend to fall asleep and miss important parts of the plot. Some might say I have lost the plot!
I have tried to do my embroidery but the numbness caused by the chemo makes it hard for me to hold the needle. This is very disappointing but I hope that after all the chemo finishes I will be able to start again.
I do have days when I am totally fed up and cheesed off. Everybody does. But I really have to say that thanks to the Internet and the characters in the books I read I may be alone, but I'm never lonely.