A more caring me?

Something good has come out of Mom's illness. I have more patience, I appreciate my happiness and I have taken stock of my own health and well-being. I do feel that I am more caring towards others, but I am also more aware of my own sharp emotions. I feel more deeply. Which probably accounts for the still raw response at Christmas over family pressures.

And this week, I have been tested again. Someone I dislike has been diagnosed with myeloma. It is a cancer of the bone marrow. Given the person's age in his eighties, the treatment offered will be palliative, but he should enjoy a good quality of life for a few years yet. What has been interesting is the family's response to the diagnosis. Much wailing and gnashing of teeth and beating of chests in self-reflection. I don't know why. I'm pretty sure that it's nothing they've done to cause this. But cancer has this effect on families. In Mom's case, however, we knew that her lung cancer was caused by her smoking habit, and that her disease process would be swift, even with palliative treatment. No time for navel-gazing, we had to get on with the life Mom had left.

So my dilemma is this. Do I care? I should do. I should care for the family who are devastated and confused and anxious. I should care because I understand how bewildering it can be, faced with the diagnosis, the options, the tests. But I just can't bring myself to reach out to them. They hurt me many years ago, and they weren't kind to Mom. They were uncaring towards us when we were coping with cancer. 

So I turn instead to helping strangers, strangers who reach out to me for support, and I wish him well.

Don't sweat the small stuff

I have changed. I used to be a worry-pot. I used to get annoyed at the slightest thing. I could get in a real temper. But that was before Mom became ill and died. A life-changing event. I wish I could bring her back, I still miss her every day. But her illness, and death at no age at all, made me see that some things just aren't worth worrying about.

I will always be a stickler for detail, for getting things right. But I am much more in tune with the natural rhythm of life now. The usual up's and down's come and go, and I am calm. Mom's illness showed me how to get the best out of life, out of other people, and out of myself.

When faced with an awful family drama, I had no choice but to go along with the disease process, to give myself up to it, and to be there for Mom, no matter what. Nothing in my life at the moment presents as much fear as Mom's illness did. Somehow, I found the strength to cope with that. 

Have faith and confidence in your inner strength. Deal with the difficult stuff, but don't sweat the small stuff.

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A little book

A year ago I was contemplating life without Mom and looking after Dad. I felt sad, lonely, afraid, ill, tired. I started blogging more regularly until I had blogged all my feelings and thoughts and felt empty, ready to start again. I've had a little break from blogging to write a little book on dying matters. It is in review at the moment and I'm very proud that I've turned a negative into such a positive.

The book signals a shift from grief and bereavement to a more outward-looking blog and I hope that will be obvious from the post topics.

Thank you to everyone who supported me through the last year. Here's looking forward to new horizons.

The banana press

Reading a GP's Twitterings made me realise that we have very different ideas about what patients should expect from GPs. GPs expect patients to fit into the numbers game (alcohol consumption, weight, blood pressure, cholesterol). Patients expect GPs to treat them as individuals. I do see both sides of the desk, being married to Dr B (who is not a GP but who does work closely with a number of excellent GPs). And having spent several years at medical school myself, perhaps I am not the best patient.

I actually wanted to call this post 'Is your GP making you sick?' but I chickened out at the last minute, in case he reads it and thinks I'm being overly-critical. Recently, there was a new government campaign about not ignoring the signs of lung cancer. Many GPs were aghast at the sentiment of the campaign, that being that prolonged cough could be cancer. They were concerned that more patients (a deluge) would demand a referral for lung cancer screening. In fact, what most patients want is to be taken seriously, for the GP to take a thorough history, even if they think they know the patient, and then to refer (or not) as appropriate. 

I have also already said how cross I am that GPs are planning to take industrial action on Thursday. This upsets and unsettles patients.

When we were preparing for Mom's death, I looked around for a support group, of similarly terminally ill people, who didn't want to go to hospice. Well, as far as we know none exists locally. And I think I know why. General Practice is not equipped for the emotional side of dying at home. Yes, they are a talented team of people who rally round with bed baths and pain relief but there was no emotional support. We found a hypnotherapist who worked with Mom to help her come to terms with her prognosis, and for that we are eternally grateful; but this approach was not endorsed by the GP and caused a delay in Mom starting this treatment, even though we paid privately for it.

I have recently mentioned this again, in response to a blog post about an article written by a Journalist who has recovered from breast cancer. I am so pleased for her and for the many women who do survive breast cancer, but there are so many people who do not survive cancer, and there is precious little support for those who know the battle is lost. Mom decided that hospice was not for her, and that meant we were on our own. And the point is, Mom's story is painful, but beautiful. Mom's story is about dying with dignity. Mom's story needs to be told.

I have offered my services voluntarily through a GP to support the terminally ill in practical ways in our community. The response: the terminally ill should try this* group, they may not suit everyone as they are overtly Christian (or words to that effect). There could be a much better way. The District Nurses already provide a wonderful service to the community but they are stretched, short-staffed - could volunteers help in any way? Perhaps administrative, preparing information packs, ordering home equipment, filling in forms? That would free up the nurses for caring. Could volunteers be trained to talk to terminally ill people in their homes, helping them and their families through the maze of jargon and paperwork that comes with this label?

Mom's story is close to home, mistakes were made in her treatment but we triumphed in the end. It is a powerful tribute to Mom. And it could help others. I would like to help others.

And the bananas? Well, I'm very frustrated by the lack of support, and the lack of understanding about the need for support, for the terminally ill. Banana is a polite way of saying bo****ks.

*anonymised

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Dying Matters Awareness Week

The support we had when Mom was dying was second to none. The group of people who rallied round and made sure that Mom's wishes were met, were angels to her and to us. Mom found it difficult to accept that she was terminally ill, until the last eight weeks or so of her life. She was helped by hypnotherapy, to come to terms with her situation and to face her options for the end of her life.

Woodland glade, May 2012, Lesley Beeton

Once Mom had confronted these choices, the remainder of her life had real purpose and meaning. We all knew our roles and how to deal with questions from friends and family. We found a new openness and honesty between us. No subject was too difficult to talk about. Mom decided she wanted to die at home, with no medical intervention, other than pain relief as required. Her GP helped Mom to sign a Do Not Attempt Resuscitation order, which meant that if for some reason either Mom or Dad panicked in the night and called an ambulance, the crew would not be obliged to take her to hospital.

Mom's last weeks were spent downstairs on a profile bed on oxygen, the summer days drifting in from the garden, her glorious flowers all around her. We had help with her care, to make sure she was always clean and comfortable. We had weekly meetings to ensure everyone in the team understood Mom's wishes.

During this period of calm and insight, Mom wrote beautiful letters to all her nearest and dearest. It must have been very difficult for her to do this. I imagine her shedding tears over the words she wrote.

On Mom's last day, her breathing became laboured. She struggled with the oxygen tube, she was restless. Although she wasn't in pain, I do think she was distressed, knowing that the end was very near. The community nurse told us that changes were taking place in Mom's body, which meant that she was very close to death. The nursing team wanted to increase Mom's pain relief using a syringe driver. Mom had decided she didn't want that intervention to prolong her life. She declined and died peacefully an hour later. 

It was a private matter, just Dad and I, then the nurses helped us to prepare Mom for the undertaker. We picked some flowers from her garden and placed them with her. It was a special time for us, a bonding time for Dad and I, cementing our new relationship for a future without Mom.

This week is Dying Matters Awareness Week. Please don't be afraid to talk about it.

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The invisibility cloak

It has occurred to me that society has a way of cloaking the difficult aspects of life, death and some things in between. I assumed that because I was OK to talk about Mom's cancer, everyone else would be OK about it too. At first I was hurt that friends changed the subject. Then I began to realise that I was talking to the wrong people. There are some people who are more open about these things. Some people will never feel comfortable talking about dying matters.

Health and youth, VLM

But I was especially surprised at the attitude of some of the doctors, mainly junior doctors, when Mom was receiving palliative care in hospital. It seemed to me that Mom became invisible. She was dying, there was nothing they could do for her, other than making sure she could breathe easily. It made our decision so much easier, to take her home to die. One of the doctors was quite upset about this. One of the doctors was frankly quite rude to us. Both of them were caring and skilled individuals, but relatively unaccustomed to dealing with death in this way.

It struck me that people with terminal illnesses become invisible, to protect the rest of us from their pain. In the same way that our society deals with older people; out of sight, out of mind. It's cruel.

Getting older is by definition a terminal illness, without the defined time frame. It is associated with a general, slow degeneration of the physical body, even in the elderly well person. This presents the medical profession with somewhat of a dilemma - how to treat all the aches, pains and ailments? I often hear friends bemoaning their elderly parents grumpiness, complaining and selfish behaviour. I do it myself. And then I try to remember that Dad is getting on a bit, that things don't work quite as well as they used to. Perhaps he does have general aches and pains which interfere with his quality of life and affect his sleep. 

So, whilst the terminally ill are still living with their illness, so are lots of older people living with ageing. Let's not pretend they are invisible.

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It's not a Blue Monday here

No way. I just don't believe it. Perhaps it's because I've not only booked our holiday but also because we're not waiting until the Summer - we go in a few weeks!

Yippee, and why not? After the year we've had, we deserve it, the whole bang-shoot. My OH was amazing throughout Mom's illness. Although he's only a Cardiologist, he helped us pull together all the specialists we needed to keep Mom out of hospital and well looked after at home. He suffered too. He cried when we got Mom's diagnosis, mostly because he knew what we would go through. And he was right in all respects. It was quite a roller-coaster.

I'm pleased though to repay him for his support by making all the arrangements, sorting out who will take care of the dogs, and Dad. And that just leaves me to take care of him, after twenty years together, still a beautiful friendship.

Gerbera, Lesley Beeton

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UPDATED : RIGHT TO DIE?

Updated 06 January 2012
I had to update my post to comment on the continuing debate on right to die, this time sponsored by Sir Terry Pratchett. The headline in The Sun today says 'Let us all die with dignity and comfort'. I agree. But there is another way, if assisted dying is not for you, or one of your loved ones.
Compassion in Dying is one place to get more information on the choices facing a terminally ill loved one. It is a difficult time for everyone, but with love and courage, dying at home with dignity is not only possible, it is positive.


I was so sad to hear Geraldine McClelland's story on Sky News today. To Geraldine's friends and family, my heartfelt condolences on your loss.

I too lost my Mom to lung cancer this year, and I would like to say to other cancer sufferers and their families that there is another way. This post is not a debate about assisted suicide - I cannot possibly say how I would have felt in Geraldine's situation. My post today is about our positive and dignified approach to my Mom's death.

Mom was only 66 and was not ready to die. Mom's type of lung cancer was caused by years of smoking as a young woman, growing up in the 50s and 60s, when smoking was considered stylish and cosmopolitan. Back then, Mom had everything. She had her own car, and expected all mod cons when she and Dad married and moved into their first home. Mom worked until she was 63 and was very happy to be retired, planning all the things she wanted to do and places she wanted to see.

Mom's cancer took her life in nine short months. These were desperate times for us, but Mom did come to terms with her terminal illness. And because of that we were able to plan for her death. We never considered assisted suicide. Mom opted to die at home and we were supported by several agencies and wonderful people, who we called 'Mom's angels'. Mom signed a do not attempt resuscitation order under her GP's guidance. The District Nurse team provided a hospital bed, commode, nursing and caring skills at home. It was explained to us the options for increasing Mom's pain relief as her death approached. This included the use of a syringe driver, simply an injection of pain relief given over 12 or 24 hours. Mom didn't want this and it was never used.

Mom was helped by an incredible hypnotherapist and towards the end of her life, she was clear about her wishes, wrote letters to everyone and planned her funeral. She was also calm and pain free. I had five beautiful weeks with Mom at the end of her life, so precious, and I am so grateful for that opportunity.

On the day Mom died, she had said her goodbyes and we had all given permission for her to go. I don't think she knew how bad her disease had become, but the cancer had grown out of her back, she had lost the use of her right arm and she could hardly see. She was conscious and could hear us but couldn't speak. Her clinical team wanted to give her pain relief through the syringe driver. Mom indicated NO! to us and died quietly within the hour.

Afterwards, we picked flowers from her garden and laid them on her body.

The point is, Mom confronted her fear of dying. And through the support of her GP and District Nursing team and hypnotherapy, Mom was a delight and a pleasure to care for. She enriched our lives. I urge families to ask for help. There is another way, and it can be beautiful and pain-free and dignified.

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