Breast Cancer and Autism by Emily

I first thought I had cancer in April 2016, after I noticed a hard lump under my breast! It felt like the hardness you feel in your stomach when you are pregnant and you try to bend forward, like a lump of concrete is in there!
I also had pain in my neck and my shoulder-blade!
With the help and support of a good friend, I went to the doctor, who referred me to the Breast Cancer Unit.
My appointment was on a Monday and the Friday prior to this, I went to the hairdresser to have my long hair cut short. (I thought if its cancer, then I had better be prepared)!
At the hospital, the surgeon told me there and then, that they believed, there were 2 areas of concern and they seem to be cancer related. They sent me for the mammogram and the biopsy, but I fainted in the X-ray room! I remember a cup of tea and some delicious heart chocolate biscuits when I came round!
I then had a consultation meeting with the Breast Surgeon, MacMillan Nurse etc.. They told me I had 2 tumours on my breast! They were recommending a Mastectomy!
My friend held me up, all the way back to her car!
I was in total shock. I’m a single mum! My 2 sons were 14 and 15.On diagnosis you always think of your kids, you always do!
My operation was to take place in May, just a few weeks away. I’d be in hospital overnight, so I needed to tell people in my family, my Dad, my sons so that they would be prepared. How do you do that then, you know tell your kids you’ve got cancer? I had no intention of dying, put it that way! My father’s girlfriend, had died of cancer the previous year, so I hoped, that wasn’t the only impression, the kids had of cancer!
It was a Monday when I was diagnosed, so I didn’t tell the kids, as they were at school and didn’t tell them for the rest of the week! I didn’t want them to go into school upset and worrying about me.
Telling my youngest, Charlie, was easier, so I told him first!
I took him outside and we sat on the garden wall. I started off the conversation with “you know how I said I was going to live until I was 97, welllll!” Telling him, I had no intention of dying.
He was really good about it, understanding and no tears!
Telling Danny would be harder.
Again it was much easier than I thought it would be. Autism and his need for information and routine, helped in telling him as days/dates of appointments and what changes would happen, were a priority for him. He said he didn’t want to see mum bald, so I ‘had’ to get a wig!
After my operation and a 3 night stay in hospital, I went home to be Mum again.  Danny hadn’t found it easy to sit with me in hospital.  He couldn’t cope with all the sensory issues on the ward etc. and preferred to sit outside.  I used to try and think of things he could bring me onto the ward, just to try and get him to overcome his anxiety.
Before I went into hospital I had given my teenage kids each, a long list of instructions about food etc. I had to check up whether they had paid any attention and ….. they had!
I was given various tablets to take and as Danny is my memory man, I had him devise a timetable indicating which tablets would be taken at what time of day. Danny would ensure that I followed the timetable and even brought me a bottle of water too, when it was time to take my tablets.
Charlie’s job, was to make me laugh with his tales of school!
Charlie and Danny also picked up everything I dropped (and I dropped almost everything!), would lift things for me and helped me do tasks like loading the washing machine etc.
While you are healing, your arm is weaker and in this case it was my left arm. Usually simple things like reaching up to a cupboard or hanging out washing on the line, become much more difficult to achieve easily and this is where I had the boys help me.
When I was receiving Chemotherapy treatment, It would make me feel tired for up to 5 days after, so I felt really guilty not been able to give the boys the time they needed particularly in the long Summer School holidays. I had weekly chemotherapy for a period of 4 months. I gave up using the wig as it was too hot to wear, but for the sake of not alarming Danny, I replaced the wig with headscarves which I enjoyed ‘styling’!
Charlie (even though he is younger than Danny) took over the older brother/carer role and would set up the Xbox to play games with Danny, particularly on days where I had the treatment, as I would just come home and sleep.
I didn’t realise that Danny had been as affected from my Cancer treatment until the December of that year. Some of the parents of children who attended his school, would hold a Christmas Shop in school. This would allow the pupils to buy Christmas gifts for their parents, without all the usual problems shopping entails, for those on the autism spectrum.
As I was helping set up the stalls, I was called away by one of the teachers. Danny had collapsed/fainted and was lying on a mat. An ambulance had been called. Danny’s hands were cold, he couldn’t move his arms, lift his head etc.
When the paramedics arrived to see Danny, he became panicky when he was told he would be taken to hospital. I had to reassure him that he would be going to a regular hospital (I guessed he was panicking because he thought he would be going to the ‘cancer’ hospital).
At the hospital they determined that Danny had experienced a migraine that had caused him to faint.
I also learnt that Dan had been experiencing headaches at home for a few days prior to fainting at school, but had been too frightened to tell me, as he thought it would be cancer! Poor Danny.

Danny also said to me, that when he would come into my room to open/close the curtains, or help me with my medicine, after I had my operation and while I was having chemotherapy, he would cover his mouth or hold his breath, so that he didn’t ‘catch cancer’!
My father’s girlfriend had died of cancer the previous year, my sister had been diagnosed with breast cancer that same year and of course ‘mum’ getting cancer, he must have assumed that he was next.
School intervened at this point and really helped Danny to understand a little more about cancer
In 2017, I tried to make up for the 8 months that cancer had overtaken our family life and treated the children to a holiday in The Netherlands, Duinrell in Wassenaar. I highly recommend this Holiday, Amusement and Water Park, as there was plenty for my sons to do to keep them busy, even hiring bicycles.
We caught the train, to ensure that Danny’s train travel needs were met (he is still too frightened to fly). Liverpool Lime Street to London Euston, then the Eurostar train to Belgium, then the train from Belgium to Holland.
I’m so proud of how both the boys behaved and coped throughout the cancer treatment! They both ‘grew up’ so much during that time!


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