Wednesday, 9 May 2012

Driving Myself Crazy

So where I left you last I was pretty drugged up and the tumour was out.  I was pretty much ok, except I couldn’t do anything. Luckily drugs are very lovely things… to an extent of course! My pain was pretty well camouflaged for some time so in my opinion, it wasn’t anywhere near as bad as the biopsies had been. I had also gotten used to sleeping upright on my back so that wasn’t upsetting me as much as I expected after my days in pain from biopsies. I was so grateful for this because honestly not being able to sleep in the position you feel comfortable in is a real pain.

The simple exercises of lifting my arms from down by my side to an upwards horizontal position, was a challenge. Paranoid that I was going to get a fat bottom from lying down so much I even tried to do some squats and lunges without moving my arms on the day after my operation. I must say that overall apart from not being able to move my arms and feeling tired I thought I looked pretty good for someone that had just had an operation.

This next bit of my story is about to get gross so if you are easily put of your food don’t read this while eating! When I left hospital I was given a few different pain killers and other drugs to take. The instructions were simply to take them all together with each meal. My sister did ask (obviously I was too high to concentrate on anything logical!) whether it would be ok to take all of these together. Nothing was said to the contrary so that was what I was taking for 2 days.

On the third day, I woke up and declared I felt a bit sick. The being sick would not stop. I became the Exorcist girl. I was sweating, shaking, going in and out of consciousness and considering I had not eaten properly in quite some time I had only stomach acid left. So was in a lot of pain. It was not pretty.

I kept trying to sleep it off and even confusingly begged my sister to hoover around me because I didn’t want to see mess when my eyes were open! However, the pain was not stopping… My sister decided to read the potential side effects of my drugs and whilst some were supposed to be taken with a meal, one was supposed to be taken on an empty stomach.

We never like to take up doctors or hospital time unnecessarily so my sister called the NHS helpline to get some advice on what to do about the green exorcist girl AKA moi that she was trying to keep a handle on. They sent a paramedic, who after coming to see me decided to call for an ambulance. Pretty soon I was carted back to hospital. Hours followed in an emergency room continuing to vomit and being in a lot of pain. Coming in and out of consciousness – not from being tired but literally from exhaustion from the pain I was suffering. Trying to have enough consciousness to ensure no one takes my blood pressure or sticks a needle in the wrong arm. Even the injection given straight into my muscles to stop me being sick was having no effect.

It’s pretty common after any operation to be sick (although I don’t know if it is to the degree I was!) but this was significant for me. Because it pretty much scared me to death of the chemotherapy I would be having. This was one day! How would I take it for weeks? Clearly I was not the strong doing squats the day after an op kinda girl I thought I was.

Although I never had any conclusion on what had made me so sick my breast care nurse thought it was most likely Norovirus caught in hospital on the day of my op. Either way after that day I recovered. I was too shaky and weak to do my exercises and panicked I would fall behind.

My phone would not stop. So I never had a chance to truly be bored or fed up of being at home. I was either in pain (I stopped taking painkillers after that day) or having visitors or trying to answer text messages.

Slowly my own day of reckoning arrived. Funnily enough with each significant appointment I’d had so far I’d always been calm on the day of waiting to be seen. When I was told I had cancer, I wasn’t nervous because I didn’t truly think that’s what I would be told. The day I had confirmation of cancer I was more anxious to finally have information on whether it was spreading, or if I would live to feel too nervous. The day I was told my third lump was not cancer, I wasn’t nervous because I was too numb with shock from worrying it was now stage 4 cancer.

This time waiting for the hour when we would go into hospital to find out whether the surgeon had been able to get a clear margin of tissue around the tumour and whether it had spread to my lymph nodes. I felt terrified.

Being as we were staying at my aunt’s house while I recovered. My mum worked nearer our own house so she took me there to wait for her to finish work therefore not losing time getting to hospital. I did my best to occupy myself watching YouTube videos until she could come back to bring me to hospital. But I had this terrible … terrified feeling.

I heard noises upstairs and got myself in a terrible state that there was an intruder in the house. Being as my arm was out of order and I was pretty weak I didn’t even have my normal courage to go and check – if there was an intruder (no matter how unlikely) they could knock me over with a feather and I’d be in agony… So I just cried to myself not knowing what to do… I ran out of the house and stood in the street for a bit. I wondered who I could call to come and check the house for me. My policeman friend? No obviously he’s working somewhere else I can’t waste police time when I know that really there is no intruder. My mum’s best friend? No I can’t call her because she will worry for me and come all the way to my house for nothing. My brother? No he is at work.

Worst of all I knew there was no intruder upstairs really and couldn’t understand why I felt so terrified. It took me a good half hour of tears and texts to my sister before I got my courage up to just face my fears and go upstairs.

Finally at hospital the results that you would really want to hear in my position were given to me. No lymph nodes were affected and the tumour was removed with completely clear margin of tissue around it meaning it had not spread any further. Yet I couldn’t enjoy the first bit of good news I’d had in weeks. The situation was that it was very unusual to have found breast cancer that was both aggressive in grade and still small without having spread. Bearing in mind that treatments are decided using statistics I was informed that there were probably only a handful of people with my particular set of circumstances around the world. So they would have to use statistics from a different age group to decide. Overall the benefit of chemotherapy was looking to be not high enough to warrant the risk. The choice would be mine. Although I would be advised on what to choose at another appointment apparently.
Knowing that the choice would be mine did not make me feel better. I began to worry that I would constantly have this feeling of anxiety for life. Physically on high alert for nothing in particular fearing every symptom as a potential recurrence. I read up stories of women getting cancer again and again. Women with a lower grade than mine eventually getting their cancer back and it spreading to other organs. I would lie in bed literally in distress shivering and not knowing why. Overwhelmed with everything I faced ahead. 5 years of hormone therapy, constant tests to check the cancer won’t be coming back… for the rest of my life now. I worried that this feeling of trauma would never leave me.

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