Dying Matters Week - What Can You Do? Part 1

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Karen Tighe, trustee at St Luke’s, talks about What You Can Do as part of Dying Matters Week 2017:

This year the big theme for Dying Matters Week is What Can You Do?  I think that this should be considered from the both the patient and family and friends perspective.

The Patient

Everything starts from when you are diagnosed.  So how do you handle it?  This may depend on whether you are on your own or with someone. I hope to goodness that everyone can have someone with them, but that is not for everyone. To hear such news is dreadful. I have been there myself, so I should know. Now I realise I may be at the extreme end of the spectrum in terms of my extroversion, my positivity and openness about my situation and therefore I do understand that what I say may not be for everyone, however I can tell you about the impact this has had.  Ultimately, everyone will react differently and the decision of how you want to handle things is down to you. Just remember the impact that your decision has on the ones you love. They will not only have to live with that whilst you are alive, but also live with all the memories it leaves behind after one dies.

You know, the first time I was diagnosed was not a shock. I had kind of expected it and you know I truly believed it was a blip in my life and it never really occurred to me that I might actually die of cancer. Then being told I carried a faulty gene, which predisposes one to having cancer, was even worse. This didn't just affect me, which of course I can control how I feel, but could also affect my children.  Finally in September 2015 it was confirmed that I had secondary breast cancer. I was told it was incurable, but treatable. I was still working then and do you know I think it took about three months for it to sink in.  As I was telling people, they seemed to be more shocked than I was.  Eventually just before Christmas, and mainly for the reason of working out my pension options, I asked my consultant what the survival statistics were and he told me that 70% of women with this condition live for up to five years. Meaning that 30% live longer than that. John and I looked at each other in the meeting, grinned and said simultaneously, "lump sum".  So I decided to retire, immediately, through ill health as I was a member of the Teacher' pension scheme.

Telling people that you have an incurable disease, especially cancer is always a shock to people. As I have been so open, people know that they can ask me questions and the first one they ask in this situation is, "can't they remove the tumour with surgery?"  I explain why not, but tell them that I can be treated. My aim has always been to get into the 30% group making it for more than five years. The one thing I have found astonishing is the number of people who have told me that, I will beat this. I am afraid to say I won't.  I certainly will try to live as long as I can though.

My decision to be open and honest about my situation has made it easier for my family. They don't have to remember who I have told what. They can therefore be open and honest with everyone too.  This strategy does mean that you end up repeating yourself a lot and therefore, I decided to use Facebook to help.  I have quite a lot of friends who live abroad, and also all over the country. Using FB to share information has helped both me and, in particular, John. John would have been the one to field the emails and phones calls that we would have received.  Being the positive person that I am, at first, I was reluctant to share some of the less pleasant realities I have had to face, but a friend cautioned me about this and told me to share both good and bad information. She said that if I didn't do this people would not really know what it was like and would get a false sense of reality. Her wisdom was right.

One of the key things I have done as a result of knowing that I am going to die is prepare for it.  By this I mean, practical things.  I am actually writing a book about this at the moment, but the key things are, in no particular order:

  • Organise a "Lasting Power of Attorney", there is one for health and one for finances.
  • Talk to your family about your wishes, e.g. Discuss a Do Not Resuscitate (DNR) and an Advance Directive about your wishes for how you want your final days at home/hospital/hospice to be managed
  • Make sure you have an up to date Will
  • Decide if you want to leave your body for science. This can only be done by you, before you die and can not be done post mortem
  • Write any letters you would like to leave for partners, children or friends
  • Plan your funeral and which funeral directors you would like to use. If not donating your body, what do you want, burial or cremation? If cremation, what would you like to have done with your ashes
  • Organise your finances and make sure your spouse, partner or family member knows about them.  If you have no one, then use a solicitor.
  • Consider going through your jewellery with any children (if they are old enough) deciding who should have what and making sure they knew the provenance of the pieces. I.e. was it mine, my mums or my grandmothers. If they are not old enough perhaps make the decisions for them, so that thing are equally divided.
  • Give away any things you would like to whilst alive as this reduces the work of the executor of your Will. Prepare a file.  I have named mine "What to do when Karen dies".  This list in order the things that John and the children need to do when I die, who to contact, benefit John can claim, what direct debits to cancel etc. 

Most importantly don't forget to tell the closest to you how much you love them. You can never say it enough.

The second part of Karen’s blog will continue on Friday 12 May.