Supporting the

Neuroendocrine Cancer Community

Many of you will know or will have read my previous blogs about my husband Ian’s story and how living with neuroendocrine cancer and Carcinoid Heart Disease have brought so many irrevocable changes to our lives since his diagnosis in 2012. 

 

Ian sadly passed away a week ago here at home surrounded by our family.  My reason for writing this is that thankfully we were made aware of the necessity of having a ‘Respect’ form in place.  While Ian was feeling quite well early last year, but having been told that the cancer had spread, he was able to deal with those necessary things that none of us like to face like arranging Lasting Powers of Attorney etc. Ian also completed his ‘Respect’ form detailing his wishes, in particular he wanted to end his life at home and not in hospital.  This form was then signed by a doctor and a copy kept on file at our Health Centre. 

The last four months of Ian’s life were very difficult and the GP suggested on two occasions that Ian be taken into hospital.  Thanks to the ‘Respect’ form, nothing could be done without Ian’s consent and he chose to remain at home, in my care, together with the wonderful support of the Hospice at Home Team and District Nurses.  

Until the importance of having this form was pointed out to us by the Palliative Care Nurse, we were unaware that such a form existed, but it turned out to be the best advice we could have had. It is every bit as important as a Will or Lasting Power of Attorney and I will be forever grateful that, I was able to fulfil his wishes. 

When a loved one becomes seriously ill, the last thing carers and family want to be thinking about is form filling.  But I feel I must pass on to anyone reading this the true value of having everything in place.  Thanks to having everything written down, I was able to just focus and concentrate on Ian’s care here at home, with everything that was familiar to him and family and friends able to visit, maintaining the best quality of life possible right until the end. 

Life is very different and strange for me now, but it is important to me to pass on what I have learned because I genuinely care. If it saves anyone any heartache through leaving things too late, it will be worth it. Cancer took away most of Ian’s control over his life, but by putting everything in place, he made vital choices and was able to take some of that control back for himself 

Thank you for reading this and I truly wish you all well in whatever stage you find yourselves on this difficult and challenging journey. The road is not an easy one and so whatever peace of mind you can give yourself in an otherwise tough time will mean the same to you as it has to me. 

 With my love and sincere best wishes, 

 Sue Bamford.

Select here to learn more about the Respect form: https://www.resus.org.uk/respect/respect-patients-and-carers
Select here for end-of-life support: https://www.neuroendocrinecancer.org.uk/neuroendocrine-cancer/end-of-life/