Riding the Emotional Rollercoaster

Yesterday, I was grumpy. In fact, I was more than grumpy…I was cross, upset, frustrated, impatient and nasty. I feel guilty when I’m overcome with these negative emotions for two reasons:

1. it doesn’t do me any good, certainly doesn’t make me feel any better
2. I should be grateful at my prognosis; there’s not many people fighting cancer who have the promising outcome that I do

But, I do think it is natural to have negative feelings, to get cross and upset sometimes…otherwise I would just be pretending that everything that is happening to me is alright…and it’s not! When I compare where I am to my counterparts – girls I’ve gone to school with, to university with, that I have worked with – I get frustrated that I can’t enjoy the joy of a new baby, the success of a career, sunny holidays or just the carefree attitude with which I used to run my life. I’m not jealous – I am full of joy that they are all happy…I just wish I was right there with them!

I do however regret one thing about my bad mood yesterday: I took it out on my poor long-suffering Husband. I shouted at him when he was just trying to make me see the positive side of things. And despite the fact that sometimes the positive side of things remains elusive sometimes, I should not take my mood out on my Husband. He has been with me at every step on this journey, his life is on hold too, he has put aside his own concerns and problems to better support me, and all he wants to do is take my suffering away and make me smile.

So today, on his way home from work he bought me a bunch of flowers…but not just any flowers – this bouquet included flowers I had in my wedding bouquet 18 months ago! How many of you can claim to have a Husband who knows the flowers you had in your wedding bouquet?! He was rewarded with the biggest smile, lots of apologies for my hideousness yesterday and promises that I will try to hold on to the positive…if only to make his life a little easier.

 

Another day, another hospital appointment

Last week I had a Cardio Ultrasound scan, to check that my chemo drugs are not adversely effecting my heart. Another hospital test seemingly designed to strip you of all dignity…literally! It was possibly the hottest day of the year so far and by the time I got in for the test, my wig was slipping about on a film of sweat (nice…not!) So, I warned the technician that I was wearing a wig and that the heat was making it very uncomfortable…would she mind if I whipped it off…so off it came! WHAT a relief. Although I am still fairly bald, my hair is starting to grow back, which is a bit of a shock as I am still on the drugs that are meant to be making it fall out. Knowing my luck, I’ll get to my last chemo appt with an inch of hair and the last treatment will make it all come out again! Oh well, at least I know it will come back!

I was then asked to put on a rather fetching hospital gown which opened at the front…a little more obviously for me as I’m rather blessed in the boob department! Loss of dignity continued as the technician had to pull my left boob up to get a good picture of my heart. Fortunately, it was a female technician and she was lovely, putting me at my ease and relieving my concerns about if the chemo had put a strain on my heart.

Following on from this appointment I had another chemo session on Monday. They’ve decided to cancel the Vincristine drug as it has damaged my nerve endings so they want to avoid any non-reversable damage. They’re hoping that the effects of the damage will reduce over time (I am too), but at the moment I have constant tingling in my finger-tips and  often get a bad case of pins and needles in my hands and arms – seems to be positional, but is happening a lot.

Anyway, the good news is that I now only have 3 more treatments! Yay…the end is in sight! They have increased the number of weeks in between my treatments because of the accumulative fatigue, so my last treatment is not until 30th July…then once I recover from that…PARTY TIME!!

The Taste of Home

As a 31 year old married woman,it’s been a while since I’ve lived with my parents. We visit fairly regularly, but visiting is not the same as living. However, since the cancer diagnosis, I have stayed with my parents for periods of time so that they can share the burden of caring for me with my Husband.

One of the best things about going home, is revisiting all the favourite home-cooked meals of my childhood -special baked potatoes, Mum’s sloppy mousaka, cheesy chicken, tarragon chicken, macaroni cheese…..the list is endless because my Mum is a fabulous cook. Actually, Dad is pretty good too!

All these fabulous dishes punctuated my childhood. Memories of family meals round the kitchen table catching up on each others news, helping my Mum in the kitchen with dinner, getting home and chatting to Mum about my day whilst she cooks the dinner. I was brought up on good food, and traditional family values. Somehow along the line, I introduced bad habits and bad foods. One of the things I shall do once this nightmare is over, is establish some better food habits – return to the home-cooked food my Mum taught me and stop eating dinner in front of the TV. Life is too precious to be wasted in front of the TV…although I have to admit to be doing quite a lot of that at the moment.

At the moment I am sat out in my little garden, enjoying a beautiful spring day, listening to the birds sing, watching the cat sleep in the shade of the picnic bench and writing my blog. I’m happier doing this, so why is the TV such a temptation?

Shhhhhh….

On side-effect watch, I am now experiencing mouth sores. Well, actually it’s more about my tongue. At the moment it feels like an alien being in my mouth, much too large for my mouth, red raw and constantly clashing against my teeth. It looks odd too – very white and the edges of my tongue looks serrated. My mum thinks it looks like the edge of a brioche tin!

Have you ever noticed how much you use your tongue? Until the use of it is disabled in some way, I bet it’s one of the many bodily functions you take for granted. With my tongue so sore and so swollen it means that talking is a real challenge – not just for me to get my words out but for them to be intelligible when they do escape. As for eating, getting food to the back of my mouth so that I’m able to swallow it is painful and slow progress.

As eating and talking are two of my favourite things, I’m a bit grumpy. The only positive is that there is no barrier on the amount of ice cream I eat – it’s the only thing that slips down my throat without pain whilst at the same time easing the pain in my mouth. As medicines go, ice cream is the best form I’ve had so far….and I’ve experienced a lot!!

Scarring

I had more chemo last Tuesday. Two of the big drugs so haven’t been feeling great since. They told me that the tiredness would accumulatively get worse, and boy they weren’t kidding. My life exists of bed, sleep, sofa, sleep, occasional shower, sleep. My life is DULL at the moment and it really starts to have an impact on your mentality. Being on my own, feeling rubbish and doing nothing is not good for the head…who knew?!

So my Mum has come to stay with me for a few days and then I will go back to the family home so that I’m not on my own. The relief is wonderful….I’ve never been afraid of my own company, have always found it easy to entertain myself, but the solitariness of coping with the after-effects of chemo is crippling. As much as Husband wants to be there, we can’t ignore the practical need for his job. I know that no matter where he is, I am his priority and that he would rather be with me than anywhere else, but life goes on, cancer or not!

It has got me thinking about the permanent scars my body will bear from this chapter in my life. One kidney, surgical scars and radiotherapy tattoos are all the permanent, obvious scars, but there are more that play on your mind. There’s the hair-loss, which no matter how prepared you are for it, is heartbreaking and definitely a goodbye to a ‘normal’ life for a while. There are the constant stab wounds and bruises in my hands from the chemo needle. My skin, once beautifully soft is now dry and papery…I have turned into a moisturising fiend in an effort to regain the supple skin of my youth. My muscles feel wasted from underuse – I wobble about the house like a pensioner with the added concern of a fall just around the corner because my ankles don’t want to work properly. And then there’s the unseen damage. With toxic chemicals running through my veins, what damage is being done beneath the skin?

I accept that chemo is a necessary evil at the moment. That my body has become a battlefield. But that both scares and upsets me. I feel I’ve said a permanent goodbye to carefree youth, where concerns over health are far from the mind. The changes in me will be far more numerable than just the physical, but I WILL get my body back, I WILL beat this hideous disease and I WILL have the life I want. I just have to wait three more months…

Bookworm

When working full time, back when life was normal (oh how I crave that normality back) I would often complain that if only I had more time I could do so many of the things I want to. I felt work got in the way of undiscovered dreams, I think this is true for many people, although there is a group of courageous people who find the confidence or faith to take a risk and follow their dreams. I admire these people, but I think it requires a certain amount of confidence, or financial security, to travel down this road, and I have never had much of either!!

So, what is my dream, I hear you ask? Well, ever since I was a small child I have always had my head in a book. I’m a proud bookworm. I love escaping into the different worlds and lives of the characters of my books. I have been known to devour 6 books on a 2 week holiday. My dream is to be able to create a book that someone else wants to escape into. But for this, you need imagination, talent, a little bit of luck and a lot of time!

Since September 2011 I have not been working. In an effort to try to find up-sides to having cancer (I’m still searching!), I naively thought that I would finally have the time to try my hand at writing. I enrolled on a home study writing course to help me find a starting point and bought various books that I thought may help to direct me and inspire me. But then I started the treatment and having the energy to do any of this has eluded me.

So what have I been doing with my time? Mostly reading, although when I’m particularly poorly I resort to television and sleep! I am currently averaging about one book a week. I have read the entire Shardlake series written by C J Sansom, AJ Cronin’s The Keys of the Kingdom, Kathryn Stockett’s The Help, Before I Go To Sleep by SJ Watson, The Behaviour of Moths by Poppy Adams, Paul Torday’s The Legacy of Hartlepool Hall, My Dear I wanted to Tell You by Louisa Young, How It All Began by Penelope Lively……among various others. I am currently reading Joanne Harris’ Chocolat, which I am really enjoying.

On occasion I shall write a book review for you…not all of you will be interested, but as my life is fairly dull at the moment, I’m running out of topics to talk about…and I’m sick of talking about cancer. For now, all I will say is that if you haven’t read Kathryn Stockett’s The Help….read it, and before you watch the film. So far it’s my favourite book this year! Probably more of a girls book though.

Doctors Appointment

I had a doctors appointment yesterday. With Husband having just started a new job and Mum choked with a cold I was allowed to go to the appointment by myself. I couldn’t get through this cancer journey without the help and support of my friends and family, but for someone who was once fiercely independent, it can get slightly claustrophobic. I enjoyed taking care of myself yesterday, including driving myself to the hospital … I’d forgotten how much I like to drive!

Things are still going fairly well, the Doctor is pleased with my progress. So far my treatment has gone to schedule and I’m hoping it will stay that way. In terms of time frame, I am now half way through my treatment!! In terms of the number of treatments, I have 5 left, having had 7 chemo sessions and 2 weeks of radiotherapy. I’m beginning to see the light at the end of the tunnel.

I’m experiencing a couple of complications, nothing unexpected for someone going through chemo though so nothing to get to worried about. First of all, my neuropathy has got a lot worse. This is a tingling sensation in your fingers, hands and feet. Feels a little like constant pins and needles in your fingers and toes. Except my tingling has extended to the soles of my feet and the palms of my hands. As a result, I am loosing dexterity in my hands and stability in my feet. My handwriting has reverted to that of a six year olds! It is the Vincristine chemo drug that causes the neuropathy and if it gets to a certain level, the effects can become permanent. Therefore my Doctor has decided to stop my Vincristine therapy for the time being, until the side effect has reduced, at which point he may reintroduce it.

The other complication is aenemia. Chemotherapy shortens the life cycle of red blood cells from 3 months to 2 months. As I am now at the end of month 3 I am experiencing a lack of red blood cells. This means that I am very tired, easily get out of breath and can get dizzy. At the moment my levels are not so bad that they need to do anything about it, but if it gets any lower then I will be heading for a blood transfusion.

My next treatment is on Tuesday. I will be getting Doxyrubicin and Dactinomycin so I shall be poorly for a few weeks afterwards, but I’m in it for the promise of long term health….I keep telling myself this when getting upset over the state of my short term health.