Firstly, thank you to everyone who has continued to ask me to publish my next blog. It seems only natural to start with why I haven’t written anything for so long. Sadly though, this is not a blog that I ever wanted to write… the day my sister, my hero, got her angel wings.
In October 2015 my little sister (who had complex health needs and disabilities, and functioned mentally at about 18 months) was diagnosed with breast cancer. Her lump was not in a typical place though (I didn’t even know that you could get breast cancer where her lump was). It was positioned just below her collarbone rather than on her actual boob. Luckily, one of her carers had felt it when giving K a shower. They acted very quickly and arranged to see the GP, who later referred her to the local hospital. I can’t remember exact details about how things happened back then. I just remember feeling extremely anxious about having to wait for various appointments and results – knowing that if the lump were cancerous it would probably be growing. The results of the biopsy came back a couple of weeks later and devastatingly it was stage 3 cancer. Her consultant told us that she would need a mastectomy – could life be any crueller… hadn’t K suffered enough throughout her life?! I was at the office when I received the news. All I can remember is feeling like I was going to be sick; I felt suffocated, my world was crashing down in front of me and I needed to escape.
As K was considered to be a ‘complex case’ the consultant suggested that she have her mastectomy at another hospital – where the surgeons were highly skilled, and where he could also be present. When it came to her scheduled mastectomy K had become unwell with a chest infection so it had to be cancelled. By the time she was better it was December and she had to go on the waiting list – we thought she would have her mastectomy at the beginning of January. However, she suddenly became very unwell; she was sleeping more than usual and appeared to be in a lot of pain. So she was taken into surgery as an emergency just a few days before Christmas. We weren’t sure how she would react when she realised that one of her boobs had gone – whether she would even notice at all. She was like a new person when the tumour had been removed – she was happy and awake, and generally keen to enjoy life (despite still having a drain attached).
In January 2016 her consultant received the results of the 4cm tumour and the lymph nodes that had been taken out during surgery. It wasn’t good news; he said that it was a very aggressive form of cancer, and it had already spread to the lymph nodes he had removed. He believed that any treatment of chemotherapy or radiotherapy would kill her – due to her other ‘complex needs’ she was thought to be too ‘fragile’. She would, however, be tested for the BRCA gene to see if I was at risk as well – this was the last thing on my mind. I cried the whole way through that appointment (luckily K didn’t need to be seen so we decided it would be best if she stayed at home). I couldn’t get my head around what he was saying… if she couldn’t have chemotherapy or radiotherapy then what could she have? It turns out that there was nothing more they could offer apart from palliative care. Apparently, because the cancer had already spread to her lymph nodes, cancerous cells would be moving around her body and they believed that secondary cancer would develop in her lungs or on her brain. I couldn’t believe what I was hearing; K couldn’t be taken away from me! When I was 10 doctors had said she wouldn’t live to be a teenager and she was now 26 – they had been wrong before so they must be wrong now!
When I overcame my initial denial I took her on lots of days out which she seemed to really enjoy. But on our last proper day out I noticed that she was going off of her food and she generally didn’t seem herself – she was refusing chocolate and cola!! Those who know her will know that she would normally scream the place down until she was given chocolate and cola. If you were pushing her in her wheelchair she would put her feet on the floor so that you couldn’t push her until she got what she wanted (you had to actively avoid McDonalds if you didn’t want to eat there). I couldn’t stop tears from falling from my eyes as I watched her enjoying her day out and having rides on Thomas the tank engine – like me, she was a bit of a thrill seeker. Although I didn’t want to admit it I knew that something wasn’t right. As the day went on she became tired so I decided we should leave before everyone else (my foster sister, nieces and, brother and sister-in-law). Before we left my sister-in-law insisted K and I have a picture together – I was rather reluctant after months of eating my feelings! But what I didn’t know then was that it would be the last picture we ever had together.
When I met with my neurologist (who treats my narcolepsy) he suggested that my sister might have a rare genetic condition called Ataxia Telangiectasia. From what I understand this is a life-limiting condition and young people normally die of cancer or lung problems. I asked for my sister to be tested; K had all the symptoms. In June 2016 K was really struggling to breath and following a chest x-ray she was admitted to hospital with pneumonia. After a couple of weeks she was suddenly rushed into intensive care. Despite having tried several different antibiotics her lungs had become much worse. An emergency meeting was called at the hospital and it was decided that it would not be in her best interest to go on to life support or to be resuscitated. This was very hard for me to accept as she had been on life support many times before and had successfully pulled through. As she wasn’t going to be ventilated she was transferred to a ‘normal’ ward where she could have more than 2 visitors. This meant that I also had to see my birth mum and step dad (who previously abused us) so it was a very difficult time. But however much I didn’t want to see them, K idolised them and she would have wanted them there – they did actually manage to be civil at the hospital.
As well as coming to terms with my sister’s diagnosis I also had to be very careful not to reveal my new name (which I changed in 2013 after receiving threatening messages from them). I had to ensure I removed all parking permits from my car so that they could not find out where lived and I had to be careful not to leave my bag (with my purse in it) or my phone lying around.
I think K was on the ‘normal’ ward for just under 2 weeks. During this time she would go between being really unhappy and in pain – not wanting to be touched – and being awake laughing, and blowing kisses. But on Sunday the 3rd of July she took a turn for the worse. She was very withdrawn and would groan in pain if we tried to hold her hand or give her a kiss. The doctors called another meeting and said that she probably only had a few days left to live. She was (finally!) transferred to a private room so that we could all sit with her. I stayed awake all night watching her breathing deteriorate and making sure she wasn’t scared when she woke up. Her pain got worse and worse, and I had to beg the doctors to give her something stronger than IV Paracetamol. She was eventually given a morphine pump on Monday morning. However, morphine can apparently effect your breathing and this was evident straight away. The morphine must have really helped her pain though because she woke up; she was alert and in a really good mood – wanting cuddles and blowing kisses at us. She was also demanding cola – surely the doctors were wrong?! She was on such good form that I actually believed that she might pull through.
However, the doctor eventually decided that oxygen should be withdrawn and as soon as it was her lips turned blue and her whole body went grey. About an hour later she projectile vomited blood and started chocking on her nasal tube, which was eventually taken out. I pressed the emergency buzzer when this happened but it took the doctors forever to come. I managed to work out how to turn the suction tube on to make sure she didn’t choke on her vomit. It was a massive challenge to remain calm so that K didn’t panic though – if I was scared then what on earth must she have been feeling? It was then that the doctor told me that she only had a few hours left – her organs were giving up.
The palliative care nurse then came and asked to talk to me and my birth mum in the office so we both very reluctantly told my sister that we would be right back. Earlier that day, one of the nurses had told me that people wait until their loved ones leave before they go, and we didn’t want her to be alone when it happened in case she was scared. But no one could tell me what to expect when her final breath came as they said everyone is different. I was given a leaflet about what to expect, which was just as useless so I asked them to tell me the worst-case scenario. I needed to prepare myself – I was still traumatised by the previous incidents – but they insisted that they could not tell me. When we went back in to sit with K we pampered her; we did her hair, oral care, and nails. She looked so beautiful; like the real sleeping beauty. Except then her breathing became unstable – her chest was moving up and down unsteadily. To me it looked like she was suffocating – she was desperately fighting for each breath. We all knew it was the end – I hugged her, I told her that I loved her and that I would never forget her, and then just sobbed – I couldn’t hold it back – I couldn’t believe it was actually happening. When she took her final gasp her eyes were wide open and they bulged; she looked petrified (an image I cannot get out of my head).
My sister, my hero, got her angel wings at 17.09 on the 4th of July 2016. (I like to think this was her way of telling me that she’s gone to a place where she can be independent).
You can watch her tribute here
Rest in peace my angel xxx