Home we went the next morning. We had to wait till Monday to see Dr Crawford. All this waiting – not a patient person am I. Monday came along and we breezed in full of expectations – yes you have this, or no you’ve got that – Dr Crawford looked perplexed. “Your a funny one you don’t present as you should. You don’t look sick and you haven’t lost 10kg dramatically. Your cells are showing abnormal but they are clumping so we are going to have to do some more tests to clarify. You will need your spleen out I feel.” “Why what do you mean cells clumping? ”. “Its not Hairy Cell,” he explained “your cells aren’t hairy. We need to do some more tests. How do you feel about having your spleen out. I have spoken to a few colleagues and if you were their patient, that’s what they would do.” ‘Ok, well yes lets get it out”. In all honesty it had started to annoy me this spleen – now that I knew that it was there. I got full quickly when eating, and it was heavy – it felt hard to breathe and I wanted it gone. “Let me ring a fellow I prefer to use” The phone rang at that moment Dr Crawford looked at the phone and smiled “Actually that’s him” answering the phone he said – “Steven – Dr Crawford – yes I’ve got the client here – “healthy” 48 year old with enlarged spleen bloods are all good excellent candidate. Yes, can you take out her spleen please? Yes ? Great – do me a favour when its removed pop it into an eski rush it to a taxi and send it over to Charlies (local cancer centre in WA) path for me? Yes, ok I’ll give her your number she’ll call – all good thanks”. He turned to me. I was looking for the cameras – am I in RPA – is this a joke? “Yep he’s happy here’s his number give him a call he’s a great surgeon – thinks on his feet – your In the best of hands. Let me know when its happened and then come and see me”. He shook both our hands and well – off we went.
My spleen is coming out. Its going in an esky in a car to a hospital. Weird. A VIP spleen. Madness. We went home, not really saying much, think I called my DOULA buddies to let them know and then we just drove quietly home. I called Dr Archers office the next day. I needed time to digest all this and tell my family. It is a crazy feeling. Rushing and slowing all at the same time. It’s like a dream fast speed one minute full of colour then black and white and fuzzy. My mind is crazy. Its torturing me. It is trying to take control. Without my kids and my ever positive gorgeous husband – I think I would’ve turned into a crazy very scared woman. Wait….I think it helps to be a bit crazy at these times.
You have to be strong for everyone else when your the patient. Well I wanted to be. I was getting tired of people searching my face “hello how ARE you? Hello how are YOU – HELLO how are you – Hello HOW are you.” It angered me – I’m ok do I look sick? How ARE you I answered back. Hows YOUR WEEK BEEN. How are you feeling? I wanted to scream PLEASE DO NOT ASK ME HOW I AM – I DONT KNOW! I’m scared I’m tired I’m exhausted. I just want to be left alone. I’ve been poked and prodded and given all sorts of reasons where’s and why’s. I’m tired. I’m normal I look fine. When you know someone has had a cancer diagnosis please, don’t ask them how they are, in a crowd of people. Ask everyone how they are. Don’t single the patient out – they already feel singled out. They already know they are different. They already know their future could be different. Just sit with them. Just talk about anything else. Please, do not give them useless information. Please do not fill their heads with your own questions to appease your own fears. Go and see your Dr for that. Don’t give them web sites to look at and report new findings. Cancer patients have a heap to deal with. They are just feeling lucky to be alive the next day. They don’t care about the price of bananas or the bitchy neighbour you have next door. They don’t want to keep telling the same story. They don’t care about illnesses you may have had 40 years ago. Its irrelevant. Its becomes nonsense to worry about the small stuff – they cant see the point – there is a much bigger worry for them. Be patient, it will all come out in the end. When the working diagnosis is reached. It will be clear and then the patient may well feel like sharing. Just as I am now. I, of all people coming from a skin therapist back ground, have got annoyed all of a sudden, with cosmetic ads – why are people so concerned with how they look when there are people dyeing – all this money should go into medical research for children adults and animals that are sick and need help.
People in the street have stopped me “Oh I heard your news are you OK are you going to be OK?” What the? WHY ARE YOU ASKING ME – who told you …. its non of your business and I can’t answer you because I don’t know – that’s what I wanted to say. You have to be strong all the time. Its like wearing a flak jacket to repel the onslaught. Its terrible its an awful time. It was for me any how. I guess other people will have a different perspective. You have nothing to tell people so they make up their own story and repeat it and man oh man………I can see it would get out of control. Chinese whispers. Having a friend or relation with Cancer makes other people worry for themselves. They are nice and polite and caring of course, they are full of compassion and concern but they are worried for themselves too. It’s the way of this disease. It’s just doing it’s job. It makes people worry it makes people un nerved and it takes peoples lives. Of course, we worry, we are human after all.
I had to face my death. Stupid things like I’d read the paper and the death notices would jump up at me. What would mine look like. What would I be buried in. Crazy thoughts that I had to snatch away as quickly as they appeared. We had just watched my mother in law pass as I said and my worst worst fear was my kids seeing that happen to me. I just couldn’t cope I broke down in sobs each time I thought of it. No one can understand and its hard to explain because people say “Oh thats not going to happen – but do they really know?” No one knows. Not even the Drs know. They can summise and they can report study’s and findings and thank god they know enough to give you a good estimation of your disease and its course. Its heavy – that’s heavy isn’t it.