Wednesday, 27 February 2013

Goals, dreams and the what the future holds

When I look back, my life has changed in spades over the last couple of years since Andrew asked me to marry him. There has been some really fantastic times and - to be fair - really bad times money wise, health wise etc.  Sometimes I feel that I want to stop the world and get off, life goes by quickly - which is a great when times are bad, but sometimes I just want to be........
 I just want to sit in the sun and smile and say life is fantastic. Don't get me wrong, I thank my lucky stars every day that I have the most fantastic family and friends. My husband is wonderful and my children are too. We've got a roof over our heads and we are fed and warm. All the things that we take for granted - and we all do it.
It'll be nice to win the lottery, I dream of what I would do if I won it. just like everyone else. Andrew and I argue over what we would spend the money on, we imagine what it would be like to be worry and debt free, however in the grand scheme of things the chances of that happening are slim. I mean would that make us any happier? Yes for a while. Then we would probably have something else to worry about.

 Someone once told me that I should stop wanting things and just be grateful for what I have. I took this on board and then I thought to be fair if we didn't want things - or want to achieve things, that's when our life stands still. Hopes, dreams, and goals are what keep us going. If we don't have a dream, how we gonna make a dream come true........... says the song - and its true. How many of us write down what we want to do in the future? How many of us write down our goals? Our dreams? Our ambitions? Well I do, I re-evaluate my life every 3 to 4 months, I have long term goals and short term goals. My short term goals have always been achievable, the goal posts may have changed but I always get there in the end. I plan how I'm going to get there. I work hard at making it happen. It never goes the way I plan it but it always works out well in the end.
 Take for instance, wanting a new car. I was suppose to achieve that by September last year, but stuff got in the way, we had to pay out for other bits and pieces and the money we saved towards the car went on birthday and Christmas presents. So money wise we had a good Christmas because of the money we saved, whereas the Christmas beforehand we were so skint that we had sleepless nights thinking how we were going to make it happen - in the end we did, but we were miserable.
 I know someone will tell me its not about the presents and the giving and receiving but I love to give presents, the look on peoples faces is priceless to me.  However this year we had the money, but I had cancer and had a breast removed just before it. Somehow Christmas was achieved in between morphine and pain, down to my good organisation skills and my good management of money . The car came in January. So the goal posts were moved quite considerably but I got there in the end.

So no its not about the money, of course we need it, just as we need our hopes and dreams. The goal posts may get moved and you may have to swap one dream for another dream, but normally that dream when it comes true is nearly always better than the orginal dream. The satisfaction of achieving things in life has always kept me going.

So how am I tackling the cancer thing......well most of the time I feel pants, I could play the victim and give in, or I could just get on with my life, and on the days when I feel really grim, I just wear extra make up, and an extra big smile. Don't get me wrong I'm not saying that's what everyone should do - its just the only way I know how. Then friends say to me - "you don't have to put a brave face on with me - I know you remember". Then I have a little pity party. Maybe a little cry, a feel sorry for myself moment. Then reality strikes and I know that I am one of the lucky ones. I will survive ( another song there) I will be cured and my life will go back to normal. There is a big light at the end of my tunnel and it glows extremely bright. So what if I've lost my boob, I've got a new one, at some they will both match with a new nipple and everything. When I'm 80 they'll still be pert and not hanging down by my knees. See free boob job on the NHS!
So what if I've lost my hair, every day I get to look like someone different. I am now matching my wigs in with my outfits. Today I am rock chick! Tomorrow I might have a 50's vibe, who knows.
I don't have to shave, I have learnt that every day I can change my eyebrows to match my hair, make up and I look good. I don't look like the victim. People don't stare at me and say " Bless her shes got cancer" So I'm not going to play the victim.

Cancer has not got in the way of my hopes, dreams and ambitions. It's moved the goal posts and time limits, but I am still achieving great things. I am still moving on with my life and if cancer stops me from doing what I want to do - well I just work my way round it.

Tomorrow is a Chemo day - yes I hate it, yes it makes me feel ill, but every session I have brings me closer to my next goal. Tomorrow I'll be half way through. I go onto another type of chemo next time which will bring another set of symptom's. My doctor today told me that the reason I am having such a high dose is because she knows its the best course of action for me. She knows its tough, she pulled no punches and told me that I will feel even worst this time. .... but I know that, I've just got to grit my teeth and get on with it.

So here's to a great future whatever it may bring.

Sunday, 17 February 2013

Wig on Wig off?

I've not written a new blog for a while. No excuse really I just didn't feel up to it. The day after writing the last blog. I asked Andrew to shave all my hair off. It was a very private moment between a husband and his wife. No one was present and we didn't make a big song and dance about it. I told him the time had come. It took about 5 Min's, as there wasn't much left. Afterwards I looked in the mirror, burst into tears and he held me for a while and let me cry.
Later on I showed each child in turn. Kate was fine, but Conor was very upset at first. They've gotten used to it a bit more now - thank god.

Now that I have figured out how to wear a wig so it doesn't fall off, ( I cringe as I remember the second day I wore one and went to get the dustbin in, it was really windy and as it wasn't properly secured the wind took it, thank god no one saw)  I am finding it hard wearing one all day, apart from being constantly worried that it looks like a wig and that people are staring,  they don't go well with hot flushes, I want to fling it off as soon as one starts which usually happen at the most impromtu moments. I also find them itchy and I have formed a bad habit of scratching underneath them.  I could be walking round the shops or in a restaurant and if anyone looks over at the wrong time - well lets just say, I need to remind myself to stop fiddling.
For instance on Thursday I went to the chemo suite to have my line flush, and a blood clotting agent put in.  I still feel uneasy about going out on my own, so as my daughter was on a day off from college she came with me. In the car on the way home she told me off, " Mum stop pulling at your your wig and scratching people can see you" sure enough a man and his wife in the car next to me were staring in wonderment. I smiled and stopped.

When I'm at home, I either wear a chemo hat, I have one in red and one in green, believe me they are not flattering, or a hat of some sort. Scarves I can't seem to get on with, but it's not unusual for me to be wearing a wig one minute, a scarf the next, then a hat the next, then back on with the wig.
As I now have three wigs I can pick and choose, so now I have adjusted them so they actually fit on my head properly and had them all cut so they sit better. I feel happier that they're not as Andrew puts it ...... so syrupified. Although I am convinced that people are still looking at me I have been brave and gone out on my own a few times. So I'll get there.

I've also spent a small fortune in hair accessories. Its just not me to plonk one on my head and that's it. No I've managed a low ponytail, backcombing, clippings, slides etc. Anything to make it look like its me in the mirror. I am getting used to drawing in eyebrows, mascaraing diminished eyelashes - and actually I don't look too bad!

After chemo this time I have to say I felt terrible. For the first couple of days I felt okay, then as the days went on it got worse. Having to inject my stomach and take all the tablets was a real chore.  I just didn't realise how sick and low I would feel. On pancake day in between tossing pancakes I felt so ill that I had to keep putting my head on the kitchen counter then step out into the cold just to keep me upright. On Wednesday I worked all day at the computer and just had to work my way through the sickness. Valentine's day I was running up and down the stairs to the toilet in between courses. Knocking back indigestion tablets in between mouthfuls of food. Friday my friends birthday I couldn't face food but knew I had to eat something otherwise the sick feeling would set in again. I took ages to select my food, then when it came I picked at it before announcing I had to go home.
Sitting in my pyjamas with a hat and my hood up on my dressing gown had become my favourite outfit.

Then yesterday morning I got up to spend a much needed weekend away with my husband and amazingly I didn't feel too bad. Not 100% but hey we can't have everything can we? I had booked a pre birthday/post valentine weekend away for him and me. Do you know what we had a brilliant time. We had a good drink, a fantastic meal and a wonderful 4 poster bed.
I managed to look okay in my wig and hoped no one noticed that that's exactly what it was. In the evening when we went out for dinner, I had bought a new dress that hid my PICC line. Wore a long wig and my husband stepped out of the shower and said " wow" I thought ' Wendie you've still got it'.

Later that night - and not wanting to go into too much detail, I had a case of - wig on, wig off?
 I mean what has everyone else done in this situation? You know - your about to have an intimate time and do you keep the wig on and hope in all the tousling its doesn't fall off, or fall over your eyes? Or do you take your wig off and hope your partner still fancies you?  Do you wear a hat that's a bit sparkly - to show you made the effort. One that matches your underwear? I mean what? We discussed it for ages, hubby told me it didn't matter to him either way he loved me. I tighten the wig and prayed it would hold on. Then I thought about it some more, I mean what if I had a hot flush in the middle of it, the wig would have to come off then? In between the fact that we have to be careful of everything on my right side especially my new boob and my PICC line on my left arm. Here we were with another spanner in the works.

So in between the latest dilimmas I'm feel much better and things are on the up. Yes I know my next chemo will be soon and I will feel terrible again, but you know at the moment I'm feeling good and I'll take that and make the most of it.


Monday, 4 February 2013

Hair hair everywhere

Last Wednesday I sat in the Primrose unit having my line flushed through and was amazed that I was the only one who still had a full head of hair. I actually wrote about it on Face book as I was in utter amazement that I hadn't lost any of it. Also - although at first I felt confused, I haven't had to shave my legs in nearly two weeks. Don't get me wrong this is great and I'm getting used to the fact that I've hardly any hair left on my arms or anywhere else for that matter. However, to my horror my eyelashes are already falling out but I have managed to find a great mascara which takes care of what I have got left and even though I've spent a small fortune finding the correct eyebrow kit, including, powders, pencils and stencils, my eyebrows are looking amazing. ( thanks to the girl on the Benefit counter)  

 My sleep patterns are all over the place I get up on numerous occasions throughout the night to check in the bathroom mirror to see if my hair is falling out. It got so frequent that when I was in the Primrose unit that day I spoke to the nurse about it in a slightly obsessive way, she told me I needed to sleep and that maybe I would  find some peace if I just shaved it all off. I realised she had a point - I really did, but I couldn't bring myself to do it.

I couldn't and still can't walk pass a mirror without looking in it, I was running my hands through my hair to see if any of it came out. I even got to the stage where I had to ask my husband to wash it as I couldn't bear to wash it myself.   I was convinced that it was all over the bedroom carpet I was obsessing about it constantly and often broke down in tears.

 In the meantime I spoke to a good friend of mine who told me that when she had her brain tumour - when we were teenagers, she'd convinced herself that her hair wasn't going to fall out. She continued to tell me that she was in denial and of course eventually it did fall out. It was over 20 years ago and I remember her NHS wig - how times have changed.  I myself told the nurse that maybe mine wouldn't fall out. She nodded her head and told me that in a few cases it didn't. Although she didn't look convinced.

Then on Wednesday afternoon it happened, that very same day.  The first lot of hair decided to come out. Not what I imagined. It came out in my hands as I touched it. Thursday I got up and I was too scared to brush it. Taking the plunge I did so and handfuls came out on the brush. In between tears I  tried numerous hair pieces. I wasn't ready to wear a wig. Buns, ponytails, fringes. Luckily I have a few. On the Friday for my sister's birthday dinner, even though I wore a bun I was mortified that hair was falling out into people's food. 
Saturday during the day I took the kids shopping. I didn't wear anything, but just put it up in a normal ponytail and clipped the fringe back. it still looked okay but I knew my days of wearing it down were over. Then that night before we went to dinner at friends, I washed it, and so much came out that the thickness of my ponytail decreased and it looked like a rats tail. I asked my husband to call our friends and tell them we were going to be late. In the meantime I'd filled the wastepaper bin with my hair and in between tears I managed to get a hair piece to stay in and hair sprayed every hair I could down. One of the guy's picked us up and as I came down the stairs he pointed to my head and said      " Its not what's here" then pointed to my heart " It's whats in here Wendie" I held back the tears and went to dinner with our lovely understanding friends.

Yesterday I wore a wig for the first time, but it took ages for me to get out of the door, as I wasn't  happy that it looked okay.Yet funny enough no one noticed not even my daughter. However that's because I can still pin my fringe over the front of it. So it doesn't seem that final. I do need to get myself into a routine of speeding up my hair and makeup - because it takes ages to apply everything. I don't want people to look at me and know I've got cancer. I want to look normal. So far I think I'm managing it.

Today I am rearranging bits, I've changed my fringe over as I had a thinning spot in the front on one side. As I put my hair up I have thinning bits at the back in my hairline, but I figure no one can see me at home.  I've just clipped a small bun in and rearranged and sprayed down the back. Clip in pieces are becoming increasing hard to wear as there is nothing much to clip them too now.

Yes I know that I should shave it off - but I am not ready, all the time I can cover it up I will. Using my own fringe makes me feel like I am just experimenting with different hair styles, however I am sure that will too be gone in the next day or so.

I cry most days and then tell myself off. I lay awake at night wondering what I can get away with the next day. I get up in the morning and give it a good brush, almost punishingly. Trying to see how much will come out. I have kept the wastepaper bin with all my hair in it in the bedroom. I cannot bear to throw it out. I hoovered the carpet again today, as it really does get covered. I know that I am fighting a hopeless cause, but I figure that all the time I have some hair - albeit around 50 to 60% has gone and its like a ball of fluff on my head - I can experiment. To look in the mirror and see someone who is completely bald feels me with dread. The thought of walking into a shop and someone knowing I am wearing a wig and getting a sympathetic look feels me with dread. Someone sniggering that my hair isn't real - yes I know I need to get a grip.

On Saturday night I did manged to have a laugh about it with my friends, albeit they would never have brought the subject up first. Andrew was proud of me joking about my hair loss, as I seem to have had a sense of humour transplant lately and have become withdrawn, however looking in the mirror everyday or seeing your hair all over your pillow isn't much to laugh about. At some point I will have to wear the wigs full time. Before my next Chemo session on Thursday I am picking up another wig at the hospital. I hope it looks good. Then I will have 3, I hope the only reason I cannot get out of the door on time in the future will not be because I am in tears because bits are falling off me, but because I just can't figure out what wig matches my outfit that day!