(Please note: if you are reading this blog for the first time, you need to start with the post entitled " The reason")
Blog entry preceding this one is "The Ghost of Christmas Past"
Lily: The Spouse's viewpoint
(Warning: Friends and family members may be offended by what I write. I mean no disrespect from what I say. The words are entwined in deep, sensitive emotion, I need a forum in which to release them, otherwise I can not be a parent to Arwyn as I know the emotions will consume me and I spent the better part of my late teens and early twenties being depressed. Those are the times when I should have been living and I can not do that to her or myself in my thirties. If J.J's situation has taught me anything it is to live and experience - So Family, be warned, I may say some things which may (or may not) hurt feelings, just place it down to the ramblings of someone in deep, deep, soul-crushing pain and then forget this post, because soon I will need you in that darkest moment. It also includes my thoughts on sex which can also be disturbing, so let's just skip this post all together now shall we).
This is my whinge, if you don't like it, bugger off...
When J.J was diagnosed and we attended the introductory " So you've got cancer" lecture, you are given a power-point presentation on the in's and out's of what happens during chemotherapy. You are also give a pile of pamphlets which you promise yourself you'll read every one of them when you get home.
The pile of pamphlets current location is: UNKNOWN.
I mean you can probably assume that there is a chemotherapy one, one for support groups in your local area; what to do when your hair falls out, religion and that God is the answer. There is probably even one for a social worker, an emergency number for the oncology ward should things go awry during treatment but these are all patient orientated.
Now, this is going to be hard for some of you to read as it will most likely read as me being selfish and self-centred for it is J.J the one with the cancer diagnosis. It is him who has been given "The Green Mile" but it is how I am feeling and if I do not purge myself of these thoughts, I know it is going to do more harm than good.
I'm angry. I am so fucking angry. Cancer is a cunt. Yes, you read right, I said the word "cunt" and I hate that word almost as much as I hate cancer. J.J knows that I shudder when I hear other people say it yet I use it freely because there is no better apt description of what cancer is and how I feel about it. And I'm angry. I'm angry at J.J for getting cancer and having Neurofibromatosis (NF1). I'm angry that he was so blase about seeing doctors for any reason, whether it was from a cut, or sliding off his bicycle going under a moving truck and having knee pain; I'm angry at his parents ( who I love dearly) for not getting the diagnosis of NF1 for their son during the scoliosis period of his teenage years. And I know that is ridiculous so apologise immediately for having the thought; but I am angry the most at J.J's doctors from his childhood.
If NF1 is a common disease (1 in every 3000), and the disease has been known about since 1882; and J.J was seen by doctors during his teenage years for a severe case of scoliosis (commonality of NF1) why weren't the fibromas (lumps under the skin) ever looked into?
J.J and I have had sex (shocker) - but even before we saw each other naked I had seen him without his shirt and noticed these tiny lumps. Now, I'm not a doctor, but I noticed that they were different and not "normal" upon the skin. When I asked J.J about these, he shrugged it away and said it was likely acne scarring as he had bad acne as a teenager. Though wouldn't a doctor see these and be even the slightly bit curious as to what they are?
I do not understand. I cannot comprehend.
Arwyn when she was born had one of the large cafe au lait marks on her back. Both J.J and I noticed it, and mentioned it to a few doctors who likely said they were just birth marks and would fade with time. Arwyn at about eight months old developed eczema and so from the age of eight months to two years she was put on every cream available to us. By two years of age, the G.P finally said that perhaps she should go to a Dermatologist, and it was he who offered the first view of NF.
I hate that J.J and Arwyn were diagnosed at the same time. I think of all the time and experience J.J would have had in coping with NF that he could pass onto Arwyn and myself. What to look out for even though each case of NF is different both inside and outside of family cases.
I can't seem to get pass how a doctor misses it with such glaringly obvious and severity of symptoms (side-effects or whatever you want to call it). FUCK YOU DOCTOR, fuck you, fuck your family, fuck, fuck, fucking motherfucker!!!!!!!!!!
Grrrrrr.....
Moving right along....
So what they don't tell you in those cancer pamphlets.
For me this means being both mother, wife, husband and father. It means being the taxi driver, taking Arwyn where ever she had to go, driving J.J to his appointments and hospital visits. It means controlling the money, making sure the bills are paid on time. It's about organising. If you can't organise a military occupation then get up and go home because you'll never survive keeping things as normal as possible for your child as well as maintaining the house and being J.J's entourage. It means housework, housework, housework. And it means yard work. The bane of my existence. I am all for cementing the world (sorry my hippy friends) because nature can go and kiss my fat arse. Not only do I have to contend with weeds with thorns (Who ever plants asparagus grass on purpose is fucking insane), I have to contend with cane toads, brown snakes, ticks, ants that bite and spiders. I hate nature! No matter how much I prune, weed, cut back, mow - it grows back (sound familiar) and there is nothing I can do.
Many a day I have contemplated the actions of Muriel's mother in the movie " Muriel's Wedding", and setting the backyard ablaze to be done with it. But that would hurt J.J as he loves the backyard and I would never deliberately cause him pain.
YOU WILL NEVER HAVE SEX AGAIN:
(Parents, friends, in-laws avert your eyes this is the thing you never needed to know section)
Look, it's completely selfish of me to think this, but sex is non-existent. And I miss it. I love sex, I always have and always will. But you will never have sex again despite still finding your husband sexy and desirable throughout all his treatments. Sex, sex, sex - sometimes it is all I think about and more often than not you'll have to take care of business on your own (though don't get too excited about that thought because you wont have the time).
YOU WILL HAVE A LOT OF COLD SHOWERS:
See "You will never sex again".
YOU WILL EITHER GAIN WEIGHT OR LOOSE WEIGHT:
Unlucky for me, I am in the gain weight section. Hip ... Hip ... Hooray!
Whether you know it or not, when given devastating news you will either loose weight because your appetite has disappeared or like me, you will gain weight for several reasons.
1. In the beginning when you're taking on the roles of everyone, you'll have less time to cook be on the move a lot and still be hungry. To counteract that, a quick stop at a drive-through will alleviate the hunger but add pounds to the mid-line
2: You will recognise your own mortality and decide " Fuck it! I'm going to do what I want and eat what I want." Hence buttery goodness becomes your best friend.
3: Emotional eating is not your best friend - keep those emotions in line less your buttocks cast a shadow over the city you live in every time you waddle up a hill.
POSITIVE PEOPLE WILL SEEK YOU OUT:
They will make you feel bad. Sad but true since that is not their intention.
I am all for positivity. I am always for hope. I mean right at this minute, at 12:22pm in the middle of the day, a week and half after being told that the cancer is incurable I have hope that a magical fairy from the land of hope and dreams will take J.J's cancer and make it disappear, never to return (and hopefully take my fat arse with her). Realistically, that isn't going to happen.
And the positive people will come out of every nook and cranny. They will tell you that " You need to think positively otherwise he'll never get better", and "if you don't think positively, if you don't truly believe that he will get better, than he wont".
What the fuck? So on top of all the emotions I am already feeling about my husband dying, you are now going to place guilt on me?? Fuck you! As if I do not want my husband getting better. As if I want him to miss out on his only child growing up. As if I want to spend the rest of my life alone when we had promised to grow old together.
And then they'll include stories of survivors of cancer who gave up on medical treatment and"just thought positively" and they are still living after "x" amount of years. I'm sure it happens, I'm sure some people get lucky but I also believe that it depends on the type of cancer you have, where it is, if it spreads. With over a 100 different types of cancer I'm sure there are many people who survive it....but you telling me of someone else isn't going to help. It doesn't give me comfort and annoys me because I have to be polite and not offend you by telling you to fuck off as I have to maintain social protocol of niceties.
RELIGIOUS PEOPLE WILL SEEK YOU OUT:
Like positive people, these people use religion to guilt you into believing in the power of the Lord. (I respect all religions, all faiths - worship a gold cow for all I care but find out first if I want religion or god mentioned before you go and tell me that God heals everyone).
ALCOHOL:
Be prepared to have your alcohol consumption doubled or tripled. Once I started driving a car on a regular basis, I stopped drinking as my need to stop standing around in taxi lines in the middle of the wee hours far out surpassed my need to drink. So for the time I have been married, I rarely drunk. Whenever you fill out the surveys in the hospitals or doctor's offices, I would always put " Once in a blue moon" under "Consumption of alcohol". Also my need to save money always out did my need to have a drink.
Now however, especially in the last three months, my consumption level has risen. However, because I am the responsible one of the family and need to be able to drive to the hospital at a moment's notice I really do need to pick and choose the evenings that I drink on. So the feeling that I need to drink will be there, but I may not get to as my responsible side responsibly makes me responsible. :)
LOOSING THE ABILITY TO TALK:
I was never a talkative person, probably made worse as my own bone disease drained any confidence from me. It was probably why I chose friends who I refer to as my opposite. Now I wont name her here just in case she doesn't want to be identified but this girl who I have known since high school was always the positive to my negative. Very social, dragged me out of bed to get to go places and made me participate in the world when I just didn't want to. She spoke enough for both of us when meeting new people until I was comfortable enough to take the reins of the conversation myself. With her, I feel that my confidence regained some of it's lost strength. J.J to me, was her male counterpart. Just as social, just as happy to drag me from my slumber to get me to do things and very, very talkative. He has a story for every subject and I have heard them all. At times during marriage hearing the same stories over and over can be painful, yet with J.J I never minded because it always saved me from speaking in social situations (thereby revealing my deformity) and because I actually enjoyed hearing the stories.
With cancer the ability to speak disappears....for all involved. J.J has either been sleepy or on his pain meds and because he is at home 24/7 he has gone from being a force or a lover of life. He has lost the ability to speak (not literally) but there's no energy in him, no spark - it has been subdued, silenced by the exhaustible nature of illness. My own exhausting lifestyle of being all things to everyone, leaves me far beyond the reaches of tired. My brain doesn't work and the ability to formulate sentences out loud leaves me lacking. With the exception of the typed word....here I have a voice in as much capacity as my ability to think allows me.
J.J: (The Patient and the Spouse's point of view)
Cancer - I don't recommend it.
I wouldn't wish it upon anyone and I've had the misfortune of meeting truly vile and genuinely evil individuals.
I've never asked Why me?
I've said fuck several times.
When I, (I mean we, as Lily and I are in this as a team) was first diagnosed, I let out a sigh, and promptly got down to the business of curing it. I prepared to go to war. The only trouble is I am fighting a war with my own body, one way or another I lose.
We went to the oncology clinics we were given powerpoint presentations - none of it gave any specific information and everything was general knowledge that you sort of already knew intuitively.
We were given hope and positive feedback and thinking.
Then things went awry.
Fuck.
So they cancel chemotherapy and cast me outside to wait for radiation. It's a problem in cancer treatment. There are three main disciplines: Chemotherapy, radiation and surgery. Each discipline distrusts the others and finger pointing begins. Personally, I would have skipped last years radiation all together and gone straight to surgery after the chemo failed. if it was done soon enough it would have been a much smaller tumour that was getting cut out then the 15x8x9 cm monster that got removed.
During the treatment, you get sick. Everyone is different, I never once threw up, but I was fatigued. I was so incredibly tired all of the time. Which, to anyone who knows me, is just not in my nature. I want to be up and on the go all of the time. Work 18 hours in a day? No problem. Do that six days a week? No problem. Still be social on your single day off? Sure thing.
Now I was exhausted walking from the bedroom to the lounge.
It took its toll. Mentally I wanted to be up and doing everything I could, my body just wouldn't listen. My heart was telling me to push through it, get up and cook dinner, sort the laundry, mow the lawn. Take the workload off of Lily, she does so much to begin with. I just couldn't get my body to obey. Clearly the war with myself was taking its toll.
I spent a lot of time living on my own. I've been as self-reliant and self sufficient as I can be for as long as I can remember. So I resent being looked after by other people. Now, I can't help it. I need Lily to drive me to appointments. I need her to kick me up the backside to go to the doctor when a new symptom appears. I need her in oh so many ways.
I don't want her to feel anything but love from me.
I have never stopped loving her and I never will.
I look at her everyday and I find her more and more desirable. She is as sexy and as beautiful as the day we first met. I love her with all of my being.
I would love to go back to having sex and making love to her. Sadly, the chemotherapy prevents us from even kissing for seven days after treatment. Then, the fatigue kicks in and the desire is beaten down by my body laughing at me, saying 'screw you arsehole you just poisoned me for a week. I'm not letting you have any pleasure until I am good and ready!'
The pamphlets tell you that your sex drive will wax and wane during treatment and that you have to be very aware of being cytotoxic etc. All it boils down to is bullshit euphemisms for kiss your sex life goodbye.
So your sex life drifts by.....
Body Image - I can deal with losing my hair. I've got an awesome head for being bald. Trouble is, you lose your facial hair as well. I don't like being without my beard and moustache, it makes me look weird. Trouble is, if treatment goes on long enough you lose the rest of your hair: the hair on your arms, legs, armpits, eyebrows, eyelashes - that really sucked as it looked like I was welling up all of the time. And your pubic hair. Everything goes. There are areas I never even realised I had hair that were suddenly barren and smooth. It grows back, but its still unsettling looking at a white strip across your brow where you eyebrows used to be. All of the body image pamphlets are directed at wigs for women, I can accept that. But what about look good feel good sessions for my missing beard?
When we were first told I had cancer, Lily wiped away a tear and quipped that I would try anything to lose weight. We both laughed.
I've gained 14kg since I was diagnosed. All the doctors are telling me that's a good thing. That I'll need the weight to keep going if things go bad. I've thought the opposite - that if things go bad then I'm going to die young from cancer and be fat as well. That's just a double whammy.
I hate Elisabeth Kubler-Ross. For those of you who don't know who she is, she wrote a book entitled On Death and Dying in it she writes about the five stages of grief. I thought it was rubbish when I first read it, but I hate it even more when I catch myself doing things that she wrote about. Like bargaining. I've caught myself making 'deals' with the universe that if I don't do something I get cured etc.
Fuck that I say.
Now that the term incurable is being used - which annoys me. Call it what it is, just say terminal. I'm going to go off and indulge in buttery, deep fried, cheesy, creamy, fatty, salty, alcoholic goodness. If, by some miracle a remission comes around, then I'll deal with the consequences of a Roman gastronomic orgy of excess when I have too.
But if the end is nigh, why deny myself some hedonistic pleasures?
I've rambled in this post.
I know it, I haven't really said what I want to say. So I'm going to try and articulate what is really on my mind. What the pamphlets and powerpoint presentations etc didn't tell me.
I feel bad.
Not because I have cancer and not because I don't have any idea how much time I have left, but because I have become a burden on Lily and Arwyn.
I didn't plan for this eventuality with a massive death/tpd benefit.
I feel bad that I am the one our wedding vows of in sickness and health turned out to be about.
I feel bad that I am not going to be there to hold their hands on the long journey of life ahead of them.
I feel bad that I am not going to be there to look after Lily when she needs to be looked after.
But mostly, I wonder if I have told them both how much I love and cherish them often enough.
If I haven't I'll say it again.
I love you both now and forever more with each passing day and nothing will ever extinguish that fire.
Blog entry that follows: " Dreaming of me as I dreamt of him...a letter."
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