"My sister's desperation to live"

My sister was diagnosed with secondary breast cancer. She had a lumpectomy, chemo and radiotherapy at her initial diagnosis 4 years previously. She then developed leptomeningeal disease and it affected her walking, bladder & bowels. She had brain mets along with loads of others. The disease was taking bits of her slowly and she was in a lot of pain.

As her older sister, I felt every emotion under the sun watching this horrific disease ravage her. Her spirit to want to live and be here for her children and her granddaughter was extraordinary. However, the disease was relentless. She had two final Inhertu chemo’s to try to extend her time in the palliative capacity and she ultimately had an extra 9 months afterwards but her body couldn’t tolerate a full dose and that was a huge let down for her to cope with as she felt she wouldn’t get a full chance at being here longer.

I remember after that last Oncology appt when they told her any more would be more detrimental and that she should take this time to do things with her family. We both cried in the corridor and a nurse came and asked us if she could help. I remember pushing her in her chair out of the hospital back to the car where our husbands were waiting and having to tell them and call our parents in the way home where the whole family would always be waiting for us when we got home from all her appointments. She tried to be as cheerful as possible and always tried to plan going out or away but those trips became so difficult because everything she needed was at home and the difficulty of trying to time slots between her pain levels wasn’t possible at the end.

In the previous year in the run up to the biggest progression I had helped her do her will and make arrangements for her house and her children. Her husband didn’t live with her as they had only gotten married a year before and he stayed with his elderly disabled mother to look after her. He looked after my sister with my two nieces too. My sister did memory boxes full of things for all her kids and her grandchild. She did them for our parents, brother and all her friends…and there was about 20 of them.

It was when she was in St Andrews Hospice that we planned a lot of her arrangements. I’d just turn up with my notepad and take instructions and then type them up at home and if she was feeling good enough we’d do more in the next visit. I trundled the bag of cards back and forth so many times until she had gotten them finished. We’d be sitting crying and the staff would come in and cry with us. It allowed us to just do what we needed to do. The staff there were tremendous and anything that she wanted to do was never any trouble. The team were truly amazing, the Oncologist Specialists spent time explaining and talking to the family too and the nursing staff were like angels. The auxiliary’s were so great and always had a smile and a chat too. It felt like home from home but with the pressure of her care in their hands and it gave us all respite while she was being cared for.

Her husband stayed there every night as she didn’t want to be alone. She spent weeks there and this happened twice.

Those last few weeks there before coming home were amongst the most precious of times for us as a family. We all got to spend time there with her. There was a family room we could spill out into to cry when we needed it. There was also pastoral care with a lovely lady nun called Katherine.

My sister wanted to go home to die and some of the family were very divided on that decision due to her not being able to be moved at all without hoists and special equipment for various things, like all the medication and because some of us were so scared of not being able to give her the same level of care that she was receiving at the hospice with having the multi-disciplinary team constantly available 24/7. We were feeling ill equipped in comparison but it was her final decision and we all got on board and the hospice staff did everything to make that happen including arranging a bed and hoist and every bit of equipment she needed for home and also with the knowledge that if she wanted to at any time she could go back to the hospice.

It was very emotional doing this but my sister was determined and it has been a very poignant thing for everyone concerned. She planned her own funeral. We executed it with precision and care, down to the coffin she had chosen. We had a big celebration of her life with a video and party.

It’s still only a short time after everything that’s happened and losing her and we’re all struggling to have any kind of normal without her. She was the glue and we’re all pretty much unstuck.

We still have her ashes to scatter and as she loved going loads of places we all have our little pots.

My brother wrote her a song called Nashville in Heaven as she never made it to Nashville and always loved country music. Her bucket list was huge as she just loved life and travelling and although she never made it to Nashville our brother will scatter his little pot there. Her song will live on in all of us as she will. It’s so very poignant and I’ll never forget hundreds of people at her celebration of life singing the tagline of ‘I’ll meet you at the bar’.

There will never be another like her.

I’ll miss her forever.