Ten things I would not be without during treatment.

This is a highly personal list of things and people without whom my life would be a lot more miserable.

1. This has to be the unflinching support of Mr G, my family, and friends. Thank you all from the bottom of my heart,
2. Lemon and lime squash in bottled water. The only way I can drink water. Strangely the chemo makes tap water taste like chemo!
3. Indian Tonic Water - all of above AND it stops the cramps in the soles of my feet.
4. Lemon grass and oil shower gel - cuts through the chemo smell on my skin (there is a theme developing here!) and the little oily globules sooth the itchy dry skin.
5. Foods I can eat on the 'bad weekend' upon me now - ginger nut biscuits, Jamaican Ginger Cake, fresh pineapple, oatcakes, and raspberries. How bizarre.
6. My lovely comfy bed.
7. Crabtree and Evelyn Hand Cream (No, I don't own shares) Smells gorgeous and melt away on skin.
8. My laptop.
9. The bird feeding station I can see from the sofa. Currently hosting baby sparrows and goldfinches with accompanying adults. Ditto Starlings. A harassed looking Robin. A very fat Wood Pigeon hoovering up the scraps.
10. The library from which, two weeks out of the three, I am avidly reading lots of lovely books.

Soundtracks...

All my life, I have realised that most years have a soundtrack. The ones of my youth were without fail the songs I heard on the radio and at the disco. Yes, once, I was a disco chick.

In later years, with tiny babies and small children, there were the chart songs we sang to them, alongside their favourite videos. One of the songs I remember was James with Sit Down. The videos included Thomas the Tank Engine, The Care Bears, Postman Pat and The Snowman. More recently my sound tracks have included The Waterboys (I found them late), and assorted tunes which meant something to me. The year I learnt to belly dance had lots of fusion music to which I shook and wiggled with joy.
This year, I have found it difficult to listen to much music. While I was recovering from surgery, lots of music simply reminded me of the past I could not live again, or it made me want to dance which I could not do. During my chemo weeks I suffer from tinnitus and music is too loud or too muffled, and occasionally plain irritating.

pic by 0silver0

Some blogs I have read recently have talked about choosing tracks that make you feel, think and dance. I did choose some but they are not my soundtrack for now. However, I have found a soundtrack for now. The seed was planted during an episode of Homes Under the Hammer. They featured a cottage called Pippin, and underpinned the piece with part of the soundtrack to The Lord of the Rings trilogy. I was smitten, not by the cottage but by the music. I promptly bought an album of the soundtrack to the films. Achingly it took nearly a week to arrive. When it eventually plopped through the letterbox, I rushed to open it, stuck it in my laptop, and bunged it on iTunes. There was my soundtrack, reflecting, pain, melancholy, strife, struggle. The counterpoints are joy, peace, triumph, steadfastness, fellowship, winning through and ultimately fulfilling a quest. This music is perfect for me, now, at this point in my life. I can listen to this music all the time. This soundtrack soothes my soul. Have you got a soundtrack for now? Think about it...

Never have bad hair day!

Since I lost my hair I have not been missing:

1. The daily wash and condition routine.
2. Driving to work with damp hair.
3. Trying to glue down the sticking up tuft with hair wax.
4. Trying to successfully colour my hair - I ALWAYS miss a bit.
5. Worrying about getting caught in the rain, quick wipe with a tissue
and my head is ready to go.
6. Fitting haircuts in on Saturday mornings.
7. Despairing at the ever increasing greyness.
8. Mislaying my favourite comb - I can always find it grinning at me
reproachfully, showing its teeth.
9. Wishing my hair was curly or swishy.
10.Picking the grey hairs off my black work cardigan.

I have celebrated having no hair today by having this done:

It will come off with surgical spirit, but I'm going to try to keep it until I go for chemo on Thursday.

The worst of times and the best of times.

Although I've tried to be upbeat and cheery in my blog, I think it is only fair on others fighting the same fight as me, to acknowledge that there are bad times. For me, my worst times have been when the chemo has made me feel really poorly. Sickness and nausea are very debilitating. When it occurs at night, the hours drag by, and I can say I've never felt so lonely as during those times.

Another low spot was when I wanted to do my share of chores, and I tried to make the evening meal. I managed to get the meat out of the fridge and into the oven, I managed to peel potatoes and carrots. However when I tried to cut up an onion and the other vegetables for the dish of roast veggies I planned, I could not press hard enough (or safely) with the knife. I was too weak from the chemo to do a simple household task. I wept buckets, it was so disheartening. I do now have a more realistic view of what I can do and when.
This week, I have had one of the best of times. A very large, very old tree in a park near my house was being felled. The 'elephant tree' was between 150 and 200 years old and as an easily climbed tree was very popular and was part of many happy memories. I went to watch along with quite a few others. I sat next to a blonde lady and we started chatting. She used to live in my close, but had moved away. With no hair, it is obvious that I am not 100%, and she asked what cancer I had. I told her, and she said she had lost her Mum to the same thing 18 months previously. We chatted, had a cup of tea, chatted some more, and quickly became friends. We found that there were all sorts of coincidental or synchronous things in our lives from names to dates of birth. Last night, we found out via social media, that one of my chemo sisters was my new friend's Mum's best friend! It is a small, small world.

My disease is awful, the chemo is awful, but I have found wonderful, wonderful new friends and that makes this the best of times.

It's the way you look at it...

Finally I am able to announce that I am to be a Granny twice more this year. I am absolutely delighted. Rachel, my first grandchild, is a great joy, if a little far away. Her Mum, my daughter in law, is brilliant at posting pictures and videos so I can still enjoy the good bits.
I have known about both babies for a while but was asked not to brag about one of them until after the first scan. That was yesterday, and quite suddenly my life took on a different complexion. Nothing has actually changed, there was no more new good news. I was just able to share my jubilation, pride and joy.

The difference is in the way I'm looking at it. I am now focused beyond my three remaining chemo's to the rest of my life. A life that will contain two happily married children and three grandchildren. I am excited about returning to work in early Autumn. I can see beyond what has to be endured and I am excited. I really hope that I can hang onto this good stuff when the fuzzy muzzies kick in and I'm bedridden again.
During my second chemo cycle, three weeks ago, I shut myself away and was becoming low in spirits. This time I've made an effort to get out, do stuff, give myself challenges. I feel so much better for this, my spirits are higher and I have a better quality of life. All the things I have done this week were there to be done before. The difference is in how I looked at it.

I need to tell you something...

When I was first diagnosed with ovarian cancer, all I knew about it was that two very close friends had both died of it. One almost exactly a year prior to my diagnosis. This obviously made me very anxious and fearful for my long term survival. I was fortunate to discover that my cancer was nowhere near as severe as their's, but the cruel statistics are that only 30% of women diagnosed with ovarian cancer are alive five years later.
Before I really knew I had cancer, prior to my operation, I decided to make my will. I did not want to leave Mr G with a mess to clear up. In with the will form were forms saying what your funeral wishes were, songs, readings, burial etc. Mr G and I did not talk about this. I put everything in a big envelope and told him to open it if I died. The envelope is still sealed.

However, Mr G and I have talked lots. I deal best with things when they are out in the open and I have a 'plan'. Now, I do believe I'm going to be around to annoy you all for many years to come. Despite this, I have talked with Mr G and he knows my views on most of the issues should I become life limited.
I do need to change some of the contents of the sealed envelope. After reflection I have opted for a green burial instead of cremation. My funeral may need to be two hours long because of all the songs I want, so maybe I'll put them on my ipod and then it can be played at the wake you will all attend. You are still requested to wear bright colours to the funeral. I expect some of you will made to feel very uncomfortable by all this. This is the way I need it to be for me.

Yesterday, I had another 'I need to tell you something' chat with Mr G. I told him I did not want to die at home if I could help it. I'm not going to go into all the reasons. They are mine and Mr G is in agreement with me.
My point in this rambling is that Mr G and I have talked about some terribly difficult things before we HAD to talk about them. We can set it all aside as info to be filed. I have no intention of dying for ages. My treatment is going well, my medical advisers are very pleased with me. I am resting much easier though, knowing that there is a plan in case things change.

In the bag...

Before you ask, no, I'm not the bag in question.
Since starting chemotherapy treatment I have found my handbag to be increasingly full. I'm not normally a high maintenance girl so I carry a fairly basic kit of purse, tissues, sunglasses, ipod and headphones.

Lately the contents have expanded hugely with:
Chemotherapy Record (Little Red Book)
Antibacterial gel (to beat the bugs)
Lip salve (to stick my lips back on my face as they seem to be removing themselves in strips)
Hand Cream (I actually use this on other parts as well. My skin seems to be trying to impersonate dandruff with vengeance)
Chemotherapy Card ( equivalent to BEWARE OF THIS PATIENT)
Water (gotta stay hydrated)
Meds ( for the roaring ouchies)
Hat (to cover bald head from sun)
Buff (TM) (To keep above head warm in emergencies)
Spare pair of earrings (for instant prettification of chemo self)
Glycerin pastilles (for chronic dry mouth)
Mouthwash (to be used 3x daily, but not when brushing teeth)

I have not resorted to a bigger bag, my fairly trendy sized bag has managed to cope. I have however noticed the extra weight.

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.