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.

Bold and bald...

Today I went out in a bandana but my head was so itchy I abandoned it after the first shop. To my surprise, no-one seemed to notice my baldness. This has made me feel a bit ashamed of myself that I should have been expecting comments. Granted we were in DIY shops rather than on the High Street. I have been covering my head all the time, outside the house and garden, prior to this. Some of the reason has been practical, I've either felt cold or have been hiding from the sun. Yesterday my hat blew off, but unusually I had put on a bandana as well, yet I was embarrassed. All this seems to make little sense. I made the decision not to have a wig long before I lost my hair. Having seen those provided on the NHS I am relieved I don't want one. There are a very limited number of colours and styles and they do look awfully like hair hats. I am finding hats more comfortable than the bandanas as they have a bit more ventilation. However my wide brimmed green hat, my favourite, is not suitable for wearing in bed!
My favourite hat.

Keeping my head warm at night was not too much of an issue until after my last chemo. I am feeling the cold much more now, so need to reduce my heat loss. I can pull the duvet over my head but this is not without risk! I've tried wearing one of my 'buffs' but that makes my head itch. A silk scarf tied around my head seemed a good idea but the differentials between bristly scalp, cotton pillow and silk scarf made it fraught with issues. The scarf gripped the bristles, skidded on the pillow and left me half garroted. I was getting frustrated!
I have now found a solution. I have a very soft rectangular scarf that I lay across the top of my pillow which provides a nice draught excluder, but also allows me to pull it over the top of my head if I need it.
Today's experiment has increased my confidence to go out without a head covering. I'm obviously going to be sensible, as the chemo makes me sun sensitive, I shall need to protect my tender scalp. But I'm not going to cover my head just for the sake of it. I'm me, take me as you find me.

There's no accounting for taste...

You'll want to eat curry, they said, the spicier the better. You'll have cravings too...

The effect chemo has on the sense of taste is well known. I was warned things would taste metallic, and that I might develop a sore mouth. The sore mouth has, mercifully, been confined to an overnight inconvenience. Long may it stay that way.
The change in taste is fairly subtle. I used to enjoy vanilla flavouring, milk chocolate, peanuts. All these now taste like cardboard. My new flavours of choice are of the tangy variety. I love ginger biscuits, tonic water, I even like green sweets now! Previously I would have chosen red or purple fruit sweets, but now I choose yellow or green. Such was my desire for tangy last night that we went shopping and I bought Key Lime Pie. I've been converted. Much to my relief I can still enjoy chocolate, but the darker the better and if it has ginger in it, so much the better. Next shop, I'm going to buy ice pops green and yellow of course. I still don't like sour things, but tangy definitely wins.
Well there is NO accounting for taste.

As sick as a...

Chemo cycle 2: I was hoping to sail through this cycle problem free like last time. Day 1 was fine, the steroids supported me. Day 2, I started to feel joint pain and the chemo fog began to descend. Chemo fog, I should explain, is a distinct muzziness and inability to concentrate. It is for me one of the worst side effects especially when combined with intense chemo sleepiness. I feel out of control and can only cope by staying in bed where I feel safe. Having spent the afternoon of Day 2 (Saturday) in bed only feeling muzzy and sleepy it was a shock to come to, at 02.30am, feeling sick. The powerful anti sickness tablets are very effective but I had finished them. In my muzzy, sleepy state I 'might' not have taken the other sickness tabs ( I will sort a system before next time), anyway I was soon sick. I kept being sick for a couple of hours, at which time I told Mr G that we had better seek medical help. He swung into action and soon we were off to the Out Of Hours Service. The doctor gave me an anti sickness injection and a prescription for anti sickness meds that I could dissolve in my mouth without having to swallow anything, and some rehydration salts to be collected when the shops opened at 10.00am. We headed home, where after a short respite I started being sick again. Mr G having heard me, rang The Hospital ( the oncology ward at Northampton). The Hospital told him to bring me in as soon as possible, so off we went. The ensuing car journey, as the one earlier, is best kept veiled in mystery, suffice to say the roads are bumpy and nauseating!
In my muzzy, sleepy and nauseous state, Talbot Butler Ward was quite intimidating and I was glad to have Mr G with me. The ward was very noisy and as each patient has an individual room, lots of closed doors. By this stage I was down to dry heaving as I was dehydrated and exhausted. My details were taken ( because of course my treatment is happening in Kettering) and obs were taken. After what seemed ages, I was moved to a proper room , instead of a treatment room, I sank gratefully onto the bed. The doctor came and took bloods and gave me an intravenous dose of the very strong anti sickness meds. The relief from the nausea was almost immediate and I began to relax a little. We were then left alone for several hours, and I was told to drink as much water as possible. I tried but the water tasted foul and the cup smelt so strongly of chemicals that it was a real struggle. I managed two cups of water in all. At about 3.15pm , the consultant oncologist arrived. He, to my delight, said they were going to send me home with extra, extra strong anti sickness tabs that they kept on the ward. Mr G was dispatched to fill the other prescription before the shops shut as the hospital pharmacy was closed! On his way out, Mr G reminded the staff that my cannula (tube in back of hand) needed removing before I could go home. A nurse appeared to deal with cannula and give me my meds, and I was free to go! Mr G had taken my hospital bag with him, and my bandana too. I've become so used to my lack of hair that I forget my appearance could be a bit of a shock. The surprised glances I received as I walked through the corridors, made me wonder momentarily, then I realised what it was. I put on my most positive, reassuring smile so I did not frighten the visitors!
This experience has taught me to sort out my medicines for the fuzzy, muzzy stage. I will never know if I did forget to take some. Help is at hand, even if it is quite a long way away. Lastly, I always knew to take the vomiting seriously, but it was alarming how quickly I went downhill. I narrowly avoided being admitted to hospital overnight. I really hope this was a blip. I shall tell my oncologist all about it next time I see her.
I'm a third of the way through my treatment, I'll keep facing forward and get this thing done.
PS We liberated some of those very handy hospital sick bowls - by doing this I've just ensured I won't ever need them!

Waltzing with Percy...

(To the tune of Waltzing Matilda)

Waltzing with Percy, Waltzing with Percy
"You'll come a-Waltzing a Percy, with me"
And we’ll sing as we waltz to the loo and have another wee,
"You'll come a-Waltzing a Percy with me".

Those of you who have read previous posts will know that Percy is my drip stand. If I need to use the loo, I need to unplug Percy and manoeuvre him along the chemo suite, exercise a 180 degree turn, negotiate the door sill and then try to use the loo one handed. If I only needed to ‘visit’ once or twice in five hours this really would not be an issue. However the chemotherapy involves the intravenous infusion of about 1460 ml (1 litre and 460ml) over 5 hours. In addition I am expected to drink too, so add in 4 cups of tea and 5 cups of water adding an estimated 900ml of fluids. This total of more than two litres of fluid PLUS the side effect of increased urination means that I get to take Percy for a waltz quite a few times. Why waltz? Imagine, dear Reader, a length of plastic tube running from back of right hand up to a machine (this is a fancy meter measuring speed of flow of infusion, time elapsed and senses bubbles in the mix), this is then connected to six footish high metal pole, holding the bag with meds in. The pole is set into a base which has five arms with castors on the end of each. There are two sorts of base, one with shortish arms (about 20 cm) and the other has arms close to 40 cm in length. It stands fair to note that the one with longer arms is harder to ‘drive’. The first time, as a learner driver of drip stands, I ended up tied to Percy because I exercised too many rotations and twisted my tubing around his pole body. This is when I learned to waltz with Percy. I needed to work out how many graceful turns I needed to execute to free myself from his clutches. I succeeded eventually, not without ‘helpful’ comments from my fellow patients. This time, a wiser and more experienced chemo patient, I was grace personified and Percy and I waltzed with style, many times up and down the room.
Off to the loo, my darlings.

Hair today...

One of the major side effects of chemo, that most people know about, is hair loss. It might surprise some people that not all chemotherapy does cause hair loss. However Carbo-taxol treatment, which is what I am having, does. It is the paclitaxel element that makes the hair fall out. Carboplatin alone may cause a little thinning but not complete loss. My hair started falling out in earnest about 10 days after my first treatment. It was only at minor nuisance level but I decided I would get rid of it all in one go. I had already cut my hair quite short, but having heard that someone found their bowl of cornflakes covered in bristles, I decided not to risk leaving it!
Mr G clippered my hair really short then I set about my head with my trusty ladyshave. I have generally been using an epilator on legs and such, so had not used the razor for ages. It was an interesting experience - the noise of the razor echoed around my skull in a rather un-nerving manner. We had tried a wet shave but we chickened out as neither of us wanted me to be walking around with my scalp covered in scraps of tissue on all the nicks. Anyway after about half an hour of buzzing I had reduced my hair to a 'flock' (fuzzy textured wallpaper) type look. It was apparent where the hair had largely fallen out - my head looked like a random new world flock covered globe. So far, so good. What I hadn't bargained for was the velcro like behaviour of what remained of my hair. I have chosen to use multiway neck/head tubes (often known as Buffs (TM), other brands available). These are soft microfibre and very versatile. This property however meant that, as soon as one went near my head, the flock like bristles so attached themselves to the fabric that it was instantly fixed. Trying to arrange the tube in an attractive and satisfying manner resulted in many swears and much aggravation. I have now mastered a stealth approach by shaping my head covering and plonking it on quickly, then removing myself from the mirror before I have time to become critical.
To set off my look, I have taken to remembering to wear earrings all the time. Today I went to the shop in a spotted, pale blue, artfully arranged head covering, with dangly silver earrings. The lady in the queue behind me commented on how lovely my earrings were. Madam, I do not know who you were, but you made me a very happy lady.

Today is not all about cancer!

You need to watch out for...

When one is sucked into the big Chemo machine, it affects all areas of life. The little red Chemotherapy Record (to be carried at all times) not only records the treatment being administered but has lots of other instructions and suggestions. The main aim is to avoid infection at all costs. This is because chemo seriously affects the ability of the body to fight infections. I have been advised not to eat takeaways, soft cheese and bagged salads, undercooked food, wash/peel all fruit and veg. So far so good. I also need to crowded places on days 10 to 14ish, and obviously not go near obviously poorly people. This is tricky when you need to go to the Doctors, I spent this morning playing musical chairs as friendly old ladies came and sat next to me! I tried to move under the guise of changing the magazine I was reading so I did not offend. It must have looked most comical. I went to see my GP today as I have a nasty sore throat. While I would normally ignore this, the little red book says NO! So, off I went. My GP is a super bloke, I only became his patient last September, so we've had to get to know each other quickly due to my current problems. He checked me over, pulse, oxygen saturation, chest, throat etc, a really thorough examination. He said it did not seem too bad, but that he would do an urgent blood test to see how my body was up to fighting the infection. If my body was not able to battle the bug, then I urgently needed antibiotics, in hospital most likely. I had the blood taken and trotted off home. At 4.30 I rang the surgery to see if the results were back. The receptionist assured me that they were and that she had taken them through to Dr N. He rang me back immediately to assure me that my bloods were OK, taking the trouble to tell me what each count was. When I thanked him for his trouble, he said he did not want me to worry over the weekend and said that I would rest easy knowing I could fight the infection. I cannot state emphatically enough how good it feels to have such a caring professional in my care team. He has, at every stage of this journey so far, been absolutely amazing and always carefully discusses or explains my choices and considers my opinions.
Thank you Dr N., you are making a difficult journey much easier.

Life in high def...

Since I was diagnosed with cancer I have had the sensation of seeing the world very clearly. This is especially so with regard to the natural world. We live in a small town in the midst of rolling hills. The brilliant greens revealed as spring has sprung have seemed extra colourful. Now, as the white blossom of hawthorn and cow parsley bedeck the hedgerows, looking for all the world like the finest lace fit for a princess, I shiver with pleasure at the sight. I suspect that my sensitivity to the beauty all around me is related to my increased sensitivity to emotions and relationships. There is nothing like a brush with a life threatening illness to sharpen your focus. I have been blessed in that I am emotionally well supported, and that family relationships are strong and good. I am, probably justifiably, very emotionally sensitive at this time. Reading fiction and watching TV are a roller coaster from tears to laughter. Laughter is very close to tears, and the reverse. I am a person who does laugh, and enjoys laughing. I deal with my life by finding ways to laugh at it, and I find ways to laugh about my cancer. I am a long way still from banishing cancer from my life. I need to finish my chemo then carry on the journey to continued remission. I realise that may not happen and that I might actually be fighting to my death, albeit a good long fight. If cancer is going to be part of my life, it had better look sharp, because it is going to be the butt of my humour as long as it hangs around.