Wednesday, 29 December 2010

The Waiting Game Starts

26th August 2009

I wake-up with a sharp pain throbbing throw my left breast I look at it in a mirror thinking ok it is real it is not a dream, I’m in trouble. I and Steve have not spoken on my return home just a few phone calls briefly explaining why I was so long at the hospital. So I feel a little lonely, shut out even. Ok he cuddled me and he could see I was uncomfortable, but his solution is in a bottle of pain killers. After all what could he do only the professionals can sort this out?

Once Steve had left for work I decide the internet is my best option. So I type in ‘Calcification of breast tissue’ in the internet search bar and the Macmillan site came up. I look threw the information Macmillan have and start to see similarities to what I have. Ductual carcauma in situ or DCIS and Paget’s for my nipple.

The calcification is the first signs of the onset of DCIS. This is a pre-cancerous condition where cells start growing inside the duct tissue and normally remain within the ducts. It is not always recognised as a true breast cancer.

Paget’s is when the nipple develops lesions on the tip that weep. On first glance it looks like eczema. It is normally seen has a warning sign or an indication of something more sinister developing within the breast. It is a rare type of cancer that is sometimes overlooked and treated as an irritable nipple.

I treated my nipple for five months as an irritable nipple I say to myself. My left nipple is slightly inverted too, but the nipple has been like this since I stopped breast feeding. So I would not note this as a change in my breast.
The treatment for DCIS is a partial or full mastectomy depending on the amount of ductual tissue involved with chemotherapy or radiotherapy depending on the grade with possible hormonal therapy to follow after surgical treatment. Once they find out if your cancer has receptors for certain hormones.
I kit myself out with the information they provide and sign myself up into the Macmillan forums. The forum is really friendly and supportive. Yet the old argument is you do not know who these people are.
This is the internet not one on one with professionals in a room. Discussing personal information within a forum could cause more damage than good, but I am not giving out my personal detail just my diagnoses and treatment so far?
Some of these people are terminal with various types of cancer. They are looking for any bit of information that can aid treatment. It could be seen as desperation and easy pickings for those who want to mislead. You hear time and time again how certain individuals will sell any bit of hope. I can honestly see how easy that can be done when your back is against a wall. You could be sucked in easily when all hope of cure is gone, but I have not been diagnosed yet.
As I look through the forums and read blogs that others have written. The realisation of what I might have and the treatment bring tears to my eyes. Breast cancer has no cure just experimental possibilities. There is an advert wanting people to trail new experimental drugs depending on your cancer. I decide it is too much to absorb and leave the site until I know what I really have.

28th August 2009

The waiting game is starting to miff me off to say the least. Why can’t they just phone you? Or something!
To know there is something wrong is one thing, but to know you could be at the end of a surgical knife is frightening.
I want to know is it DCIS or is it just me going crazy over nothing. There are three grades of DCIS. Low, intimidate and high grade DCIS. The grading is given by how the cells look and if they will turn into invasive cancer. High grade means you carry the greatest risk of it returning. I am just hoping my results show low grade or nothing.
Yes too much information and no answers can lead to sleepless nights, but come on. I’ve decided to check the site out again after all whom else can I talk too. There is a chat room that runs on the site. They seem a nice bunch of people and very supportive. They ask if I’m a newbie and welcome me. I give them details of what is wrong and women replies in a private message. If you want any help just ask I’m here most nights. I went through a similar experience to yours and it can be lonely.
I don’t know this women from Adam she is just text on a screen, but hey, better than nothing and it is a distraction.

It is sad reading a lot of the blogs and your heart goes out to these people. Some relatives question how they should act. They feel more like a nuisance rather than help and nothing they say can console the person with this diseases. I am not looking for someone to console me personally. I just want to know why me?

My life style is a healthy one. I have never smoked and barely touch spirits because of the diabetes. The fact I like to walk everywhere and love my fruit, meat, fish and vegetables. Says really I should be as fit as a fiddle not even a diabetic, but realistically that advice is a bunch of rubbish. How can you advice your children this is how you should live when I am prime proof that’s wrong. Some would even say I am a classical example of why you should do as you please.
It is amazing how the internet has opened up a community that was not possible twenty years ago. The only way you could meet others was by travelling to a hospital, or talking face to face with a bunch of people at a community centre or GP’s surgery. This way you can remain anonymous to others and speak your mind.
One person said in the forum you can say things you cannot say to family and friends. The people here emphasize this with each story that is told, but at the same time give you the support and information needed to get through the bad times.
When speaking to consultants in a hospital you feel rushed to talk when really you need more time to absorb the whole situation.
The forums allow you to talk in your own time to nurses and they reply quickly. Not only that you can build friendships with others. Which some find a blessing because of their treatment is keeping them house bound. The internet gives them contact to others in a similar situation.
The forums give an avenue that is greatly appreciated amongst a community that feels isolated by fear of offence or worry pushed on family members.
Personally I can connect to what they are saying because I cannot talk to my husband about it. My eldest daughter well she has her university to think about. My mum is not well and does not need more worry. My friends are there, but where do you start without a thousand questions being asked. Without feeling stupid and considered a hypochondriac.
This online community has gone through it and the treatment. They understand the highs and lows you will face. Although it would seem sad to some people it is an outlet and it is needed especially through such a personal stressful period.

I watch on as the live chat scrolls up the screen. They discuss their treatment in detail and its side effects. Then the room goes quiet as a post is put up to inform people that one of its regular residents has passed away. I do not know this person, but tears trickle down my face as I realise the full impact of this diseases CANCER.

30th August 2009

I had a phone call today asking if I could watch some children of a friend. I and Steve had told only a few people about my situation. So I bit my lip and said I can’t.
“It’s ok I understand.” She replies “You must be busy”
“No you don’t!” I reply annoyed that I feel I have to explain myself. “It’s not what you think.”
“Why what’s wrong?” she asks softening her tone of voice.
I hesitated for a moment and then blurted it out.
“I’m going through a breast cancer scare and I recently had a biopsy so I’m still sore.” I say.
“Oh I’m sorry to hear that.” She starts to ask questions which I cannot answer.
“Look I’m here for you keep me informed.”
The phone call ended. I guess she was in shock and did not really know what to say. Or I was not very forth coming on the phone.
Informed nice word I think like I’m gossip of the week. This is what I and Steve were trying to avoid. Yes I am stressed; yes I am pissed off, but informed. I’m not informed so how can I inform anyone.
People have a way of saying the wrong words at the wrong time even if it was meant in none malicious way. You personally feel every word is not from concern, but curiosity to generate gossip.
So is this how it is?
Do I have to pick up a phone and inform?
Now I know I could have just ended the conversation before it started, but you feel as if you must explain yourself.
Steve gets annoyed with me when I do this. To him it is no-one’s business but ours. We may be born on the same day, same year and it says we are totally compatible because we are both Leo’s, but we are total opposites of each other in every way.

I feel like the Metro paper being passed around the tube. I am there for one purpose to create gossip. It is finally out there amongst a community of people who do not care. Yet my journey has not even started yet, not that they are interested.

Like I said people thrive on sad stories it takes their minds off their own problems. I can understand why people become reclusive and withdrawn because of cancer. You don’t want peoples’ eyes dipping with that I’m so sorry look. Or let’s just cross the road she won’t notice then we don’t have to talk.
My husband avoids subjects that he finds are upsetting because it is negative not positive. The truth is I will be battling this disease on my own. Even if my friends say they are there for me.
I cuddle up to Steve searching for reassurance and we end up making love. As he caresses me I feel empty and sad. I want it to be like it was when I was living up north. Our relationship has faced a few glitches of late. The lack of privacy and intimacy a young relationship thrives on had been interrupted. Now I have cancer to think about and the psychological effects not just on me, but him too.

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