Samantha Lanier - facing death by enjoying life...
Kicking The Bucket Is Last On The List
I am venturing on a five-day break with my two youngest sons - a 23-year-old master's student and a 25-year-old administrator. It is obvious to myself that that this is possibly the last holiday I will have with them, not just because I have a life limiting illness but as one is soon to depart to Glasgow and the other has just purchased his first flat and intends to do quite a few alterations involving time and money.
So, I thought I had wanted to visit Ireland for many years and we should use this opportunity to do so whilst we can.
Ireland has been on my bucket list for ages, images of green fields, legendary hospitality and little green men come to mind but little green men aside Ireland has always held a sense of intrigue. An island that is so close to us geographically but still an island with such a sense of its own identity and some amazing history be it very sad at times.
We plan to visit Belfast, drive along the coast to Giants Causeway, take a train to Dublin but, visit the Titanic exhibition and receive a personal tour of the murals that show Ireland’s history in a unique form. All of us are huge Game of Thrones fans and will spend some time hunting down shooting locations.
It is going to be a bit physical but never pushing myself to experience new things would be an extremely tragic waste of life I fear. Having the two boys with me will be of great help as they can take charge of themselves as and when I need a break and a rest, unlike holidays with Adelaide when I need to stay 100 per cent alert.
To me having a bucket list is important, I believet it helps to keep my spirit of adventure intact and keeps my dreams alive; it allows me to fulfil as many dreams as I can. Some things on my list are quite small - like attending an opera or ballet and learning to play the piano. They are my dreams though and I am enjoying filling my bucket to its brim before I eventually kick it.
Bucket list derives from the term “to kick the bucket” a term for death. It is not known how the term came to be used but it could relate to the kicking away of the bucket at public hangings, which was a well attend pass time for the public up to 1868 . It has been recently popularised by Jack Nicholson and Morgan Freeman in the 2007 film The Bucket List.
They play two men who meet on a cancer ward and decide to travel the world experiencing as many adventures as they can before they die. It is an excellent film and if you get the chance to view it I would urge you to watch it.
As in the above film I guess my bucket list started just after my first round of cancer, I have always had a bit of a fear of flying and trying out the new and up to the age of 37 I had never travelled by air or been out of the UK for 17 years. Thinking that my life was possibly going to be a short one was a bit of a game changer.
My first big challenge was to visit Florida and the Disney Resort. I had always been a very big Disney fan so to walk down main street and hug Winnie The Pooh and Tinkerbell was a dream, (even if my son kept telling me they were not real, just actors). We also got to go to Sea World to see the Orca whales and Discovery Cove where we swam with dolphins the loveliest of creatures and quite rubbery in texture.
After the above I decided to venture to Greece, Kefalonia in fact an island that had held my imagination since ready Captain Corelli’s Mandolin and the story of the islands struggle during the second world war dealing with occupation and the slaughter of Italy’s troops when Italy decided to switch alliances during the war. I was totally blown away at the Islands beauty the stunning scenery and clear blue seas were breath taking.
On one of my birthdays, Adelaide and myself had tea at the Ritz, another one of those things that had captivated my imagination since childhood. I have had afternoon tea in many places since and not one of them has ever come close to quality or quantity.
My greatest dream I have achieved to date is that of Hawaii, since the age of eleven I had wanted to go to these Islands. In 1977 when Elvis died I remember exactly where I was, Pakefield Holiday Park, I had always loved Elvis, the following summer BBC2 played all his films during the school summer break and after watching the ones filmed in Hawaii I was hooked on the place.
After cashing in my pension this dream became a reality and boy it did not disappoint it was everything and more I had always dreamed of. It is a place of beautiful beaches, exotic rainforest, amazing food and excellent hospitality that sunset on Waikiki beach with stay with my daughter and myself for ever.
Some of my desires I shall not experience. India and Egypt have by far the most fascinating cultures and historical value I could encounter but I fear my health could not cope with such trips, but I can still dream as I do also dream of cuddling a baby orangutan and baby chimp.
Other dreams are more obtainable like the Blackpool lights, visiting as many cathedrals as possible, Lindisfarne Island, staying in a yurt hut tent thingy at Glastonbury, Versailles hall of mirrors. Monet’s garden, lunch with Lucy Worsley (chief curator at Historic royal palaces) a ride in an Aston Martin, view a Faberge egg in St Petersburg, the Vatican City, Poland (Krakow Auschwitz) and seeing Paul Simon in concert. Many of the above are possibly achievable, some are just pure dreams but whatever they are they are mine.
I read an article in the Guardian Newspaper by Kira Cochrane suggesting: “Bucket Lists encouraged a high blend of individualistic behaviour and conformity where we are all charging towards similar goals and using social media as a window for our enriched lives”.
Psychologist Phillipa Perry believes that by having a Bucket list “we are learning to deal with our own vulnerability and we can use them to form connections with other human beings”.
I can see that Cochrane could have an argument there as most places we visit are of my desire to do so, but to balance this out I want to share a small section from my daughter’s school report: "Adelaide has a wide general knowledge, much of which has been gained by visiting many places, and she shares this and uses it in her learning."
My Bucket List has enriched my life and that of my daughter's no end, I will always push myself to explore and enhance our lives until I can no longer do so. I fully encourage whoever is reading this blog to extend their knowledge and experience new surroundings it can only make you a better person and a more interesting one at that.
Cancer May Be Mine But It Hurts Those Close To Me Too
I have recently been reading a book called 'Not That Kind of Love' by Clare and Greg Wise, yes that one from the Crown.
Greg’s sister Clare has since died of Cancer and Greg nursed her right to the very end. The book begins with Clare’s thoughts and feelings as she was first diagnosed with breast cancer, as Clare became too ill to write Greg took over the writing as a way of informing their many friends of her day to day life. You get a unique insight into what it is like to look after someone that you love who is dying of Cancer. Gregg faced many struggles especially understanding his sister’s pain, something that his sister would remind him of. Gregg struggled with the acknowledgement that his sister was losing control of her life and he could see the isolation that was occurring, but above all in the end it was her loss of hope that really hit him whilst she was in her last weeks of life. His blogs moved from his whimsical thoughts to a daily breakdown of Clare’s medical procedures and thus became less personal. Greg suffered from compassion fatigue towards the end but his loss of his elder sister was immense, she was someone who had always been there in his life and now she was not. It soothed him to write and helped him process his thoughts and feelings.
This got me thinking that having cancer is not always about me, is it? Ok it kind of makes me the centre, but how do my family and oldest and closest friends feel and cope. I asked my children, my mother and a few of my friends for them to express their feelings and fears.
The overall majority felt that life had been severely unfair to me as it was bad enough having cancer once but three times was just more than anyone could or should bear. Sue felt it was unfair as I was such a good friend always willing to help and listen in times of need and why was such a nice person afflicted three times? and why not some highly unpleasant person have it instead of me? Three of the four friends asked felt that it had made them address issues within themselves and whilst some had put off dreams and things that had wanted to do for many years seeing my situation had energised them into making changes within their lives. Max makes sure she eats healthy and keeps fit and when she feels a bit sorry for herself she remembers my bravery and dignity and realises how ridiculous her trivial problems are compared to mine. Sara makes sure she spends more time with her family and Sue after procrastinating for years finally booked and set out on her Machu Pichu walk, which she is currently embarking on as I write. I cannot wait to see her photos and hear about her travels. Kate worries that she is losing a good friend far too early for her to be happy with it. Kate sat with me at hospital with my first round of cancer and whatever the day or treatment we always found something to giggle about she always brought some humour to my day, she was christened my Breast Buddy for these occasions.
My terminal diagnosis came two months after my mother’s husband had died after 49 years together, my mother was still dealing with her immediate grief at her husband’s sudden passing- he died after only five days of being admitted to hospital. My mother explained that the news was devastating for her and shocked her already fragile emotional state, having to draw on her deep inner resources to cope and to support me in any way she could. Taking into account of her age she does do what she can, she may not be able to scoop up my domestic chores and preform a Mary Poppins style tidy up but she does a mean stack of washing up. She is, however, always on the end of a phone if I ever need to off load. I do worry about her though as she ages and if I was to die before her I feel it would devastate her in a way that she would never really recover from.
There is no massive clan of family that I can knowingly claim to be related to apart from my mother there is an elder brother. His partner received a double organ transplant last year and it is safe to say he has his care duties well and truly wrapped up closer to home. There is a younger sister who last year ran for the hills when the realisation that she may be called upon to nurse her elderly mother and sister through their deaths, feeling that she was put upon too much. That avenue exhausted itself quite quickly. So, it just leaves my children.
My middle son will burden the responsibility of clearing up my affairs when I am six foot under, after all he is the most responsible and principled youngster I know. He will do everything to my wishes or as near to as he can. He when asked to contribute felt he could not share his feelings to the public. My youngest son just finishing Uni and applying for his masters just never got around to sending me his thoughts saying he was too busy, I hope that he was truly too busy rather than just avoiding the issue.
Adelaide my ten-year-old daughter could not wait to write things down, rushing upstairs to her expansive collection of stationery she produced two A4 sides of clear and clarifying writing which was well beyond her years. She really does understand the complexity of the disease and that a cure has not been found. She also stated that at ten she was aware that life is not perfect and it will never be. She says having a mum who is dying of cancer does not stop her dreaming of her future or being who she is- but at times it does upset her. Thankfully she felt that the staff at her new school were very supportive which gives me great satisfaction knowing that the recent change of school was a positive one.
In those last few months Gregg was everything to his sister, her cook, carer and drug runner and link to the outside world. I do not think that I will have that level of care from someone for me in one form like Clare did from Greg, but I will have an eclectic and interesting small group of family and friends that will all play their own special role. Sue with the hoover my goodness that women can clean a house in no time at all. Katie will cook up the most healthy and tasty meals as she has done many times for me in the past. Kate my Breast Buddy will sit there tell me stories and just make me laugh. Sara and Max will remind me of who I am but were I came from and how much I achieved in my life as I have known these two the longest. Ruth will dispense advice (which she is an expert in by the way) I am grateful and truly honoured that I can call them my friends and in my last weeks and days will gladly enjoy their company as much as I will my small family.
Dying Does Not Stop The Need For A Dog
Read Samantha Lanier's take on the benefits of dog ownership whilst suffering a life limiting Illness.
It has now been a whole year since I have finished my degree in History, I have used this year to travel and experience some of my bucket list entries. I know as my cancer spreads slowly around my body I will gradually lose my mobility and simple physical tasks will become difficult as the pain will be incredible coupled with the feeling of total exhaustion. I will need a massive amount of drugs to get out of bed let alone move about, this will lead me to having to surrender my driving license. My independence will be gone and my movements will be in the care of someone else, after six driving tests I finally got the hang of driving and will loathe not be able to get around as I wish. This will create a lot of issues as I have lived on my own for the last 11 years and with only a handful of family to call on for help.
So, five months ago I bought a puppy, a miniature black and tan Dachshund who I have named Cordelia, a name that was longer than her when she came to live with me. It was love at first sight when I viewed her and then to find out she has the same birthday as I do, 31st Oct, I knew that it was meant to be.
I had wanted a dog like Cordelia for many years but knew that I had to wait till after Uni at least so that I could give her the attention she needs. Knowing that I would never be able to hold down a full time job due the illness, what employer would take on a new employee with a terminal illness?. “Oh yes I would love to accept your job offer sir, but I will need at least one-half day off each week for my medical appointments, oh and could you please supply a quiet room for my midday nap, I am sure the other staff will have no negativity to taking on my work load on these days”. So I thought the time was right to get her as I would have time to devote to her.
Five months on and what has my dog brought to my life? - Warmth especially as I write she is all snuggled up on my lap and feels like a hot water bottle. Her walks are not great marathons she gets 20 minutes in the morning and 20 minutes in the evening. Each walk gives me purpose as it has managed to strengthen my leg by giving me gentle regular exercise. It also helps Cordelia as she walks off her excitement and is less destructive. It provides vital socialisation as she loves people and when she spots certain people her tail wags like crazy. If she someone that she does not know her tail still wags but if that person does not acknowledge her she looks at me as much to say: “Do they not know who I am?"
Dog walking is a great way to reduce isolation as you have to get off the sofa and out of the house, it can also reduce stress and everyone, well almost everyone loves a dachshund, I see people smile when they are behind their car wheel when they spot her out walking. She is proving to be a very loving companion for me.
Bill Thomas a doctor in Up State New York began a placement at Chase Memorial Nursing Home, what he saw left him very upset the residents of the home had given up on life. So in 1991 Thomas had an idea he called the Eden Alternative, with a grant from the authorities and the backing of the homes board he set about some changes. Thomas believed that a good life was one of maximum independence and what he saw in the home was far from this he maintains that there were three plagues in old age and disability, boredom, loneliness and helplessness. To combat these plagues, he set about his plan by introducing pets, gardening and a child care facility onsite. The lawn was ploughed up and replaced by a vegetable garden which was maintained by the residents with support from staff. The building was over two floors and Thomas bought two dogs one for each floor and four cats, two for each floor, he filled the building with birds 100 in fact two to a cage placed all over the building, Rabbits for outside and also purchased chickens.
After time what Thomas recorded was remarkable, residents who rarely spoke if at all suddenly found their voices, they informed staff of the names they had given the animals a daily breakdown of the animal’s movements and a willingness to take the dogs out for walks. Residents began to take responsibility for the animals on a daily basis. Childcare facilities were also introduced and the children were encouraged to interact with the residents. Within two years Thomas noted that the use of anti-psychotic, anxiety meds and antidepressants prescriptions fell by half, the lights had come back on in the resident’s lives. Thomas felt that all people needed a “Fundamental Human Need For A Reason To Live”, by the introduction of the animals Thomas felt he had given this to the residents.
Some people may think it was selfish of me to get a dog when I only have a decade or so left to live as Cordelia could live up to 14 years. Cordelia will stay with my daughter and will provide a vital link to me that she will be used a grief tool acting as a source of comfort as she is very much my dog and will follow me everywhere and is rarely out of my sight. I have no doubt that Cordelia will be a great source of comfort to my daughter as she will remind her so much of me.
Owning a dog is a big commitment, it is not just the feeding, walking and personal care there is also insurance (cheaper than mine though). There is also the three-hour window of which is the longest I will leave her alone if I have anything longer than that then I employ a dog sitter for her, luckily she only lives two doors away and Cordelia loves her and she also cares for her when I go away. I find it a great privilege to own Cordelia she brings me so much pleasure and I would never have believed that such a small floppy eared hairy dog could imprint on me so much. One of my friends in the village June says she has given me a new focus, I can agree with that but she has also given me so much more.
If you see me out walking her around the village please stop and say hello to us, after all Cordelia will enjoy it.
Anyone wanting to read more about Bill Thomas you can find his story with in the book Being Mortal by Atul Gawande, the link is below and other book sellers are available.
Have Passport Will Travel……. Well, After Careful Considerations
After the response from my first blog about Death Café and how I felt about dying so young. The response was very positive so I thought with the holiday season just around the corner I would share my experiences of living with cancer and the preparation needed to go on holiday and the reasons I will not stop travelling.
I expect many of you are planning your main summer holiday right now, what do you think about when you book? The weather, the food, what the night life will be like or is there a good kids’ club?
When I start to plan my trips, I must assess the standard of healthcare that is available, that means no third world developing countries, I need access to good and modern hospitals. If I was to have a fall (my bones are so weak due to osteoporosis caused by the cancer pushing the calcium out of my bones), I could easily break any one of them. This also means I cannot take part in any adventure sports, skiing is out as well for any winter break.
I have a bucket list as we all should, this planet of ours is amazing and we should all see as much as it as we can. I doubt I will ever get to Nepal now or either Egypt which is saddening but I have plenty of other places to go. When I have bitten the bullet and decided on location, I book flights and this also includes airport assistance. This equates to being placed in a wheelchair and whizzed through security and straight to the boarding gate where you do get priority boarding (so there are some plus points). The same goes for landing, no long wait at the passport control, the staff even help with the luggage. Most staff are pleasant and helpful but some countries have a bit of a way to go for a better polished service.
Accommodation needs to be ground floor unless there is a reliable lift, however saying that on a recent trip to Italy I had checked if our room was ground floor it was not they said but there was a lift. What they failed to tell me was that to access the hotel there were some very steep steps to negotiate. I will remember to check this next time I go away, as to many steps really hurts my leg and hip. I tend to book the room and flight separately I find that I get more control of my surroundings.
When it comes to insurance I have very little control over this. I have now found a good company that will insure me, after many companies turned me down. However, this comes at a hefty premium, just under £80 for five nights in Italy compare that to a friend’s recent trip to Portugal with three children at £11 for the week.
I love exploring and travelling but it is never a spontaneous act. My trips must be worked around my treatment, my blood tests and hospital appointments. I believe that it is very important to take these trips though as I get to make some very special memories with my daughter. On our recent trip to Italy my daughter and I visited the street in Naples known as Christmas Alley. This is where men and women sit in a small workshop all day making nativity sets, these sets are very individual and are very popular in Naples. My daughter and I bought a small one of these so every year she opens it if I am still here or not she will always remember that day when we bought it. The day we sat and ate handmade pizza and she fell off her chair and could not stop laughing, the day we caught the train to Naples and experienced a bunch of musicians playing for the public on the train for tips. I also make a memory frame of each trip we take so that she has a record of the things that we have done.
I am so grateful that I have got the chance to do these trips (I will be visiting Ireland with two of my sons in July). A little unknown fact is that if you are diagnosed with a terminal illness and you have a private pension you can cash in that pension and receive the full amount tax free. This has enabled me to reach a few of my bucket list destinations (not everything on my bucket list is a place to visit though). It has enabled me to spend that special time with my daughter away from school and home where things draw you away from the beauty that surrounds us and we can just relax in each other’s company. I like to explore other cultures and belief systems and sample local delicacies. Sitting on Waikiki beach with some street food watching the sunset will remain with me until the day I die.
I doubt I will ever travel long haul again, it is extremely tiring and puts a lot of strain on my bones. Even a five-night break in Italy saw me in bed by 8pm some days, not just my illness that exhausts me having to travel as a single parent is also tiring. With no one to share the stress it takes its toll on me. Thankfully there are so many sites in England that I have yet to visit castles, historic houses and cathedrals are my favourites as well as zoo’s and museums.
My two youngest sons have agreed to travel to Ireland with me this summer and we are all aware this could possibly be the last time my sons and I holiday together. One having just bought his first flat is full of ideas for improvements to it and the younger son has just finished University and is hoping to work in Korea as an English teacher. Life still goes on for all those close to you after all, they cannot put their dreams and hopes on hold.
All I know is that the three of us are really looking forward to visiting some of the Game of Thrones sites as we are all fans of the show, and I intend to be around for the final season of that for sure.
Facing Up To Death
Since Death Café began on the peninsula there has been many who ask, “what an earth is Death Café”? Well it is not for everyone, especially if you are looking for a bereavement support group as Death Café is far removed from that. Not that we would turn anyone away but being clear as to what death café is, is an important element to know.
Death Café is a movement that began in 2011 by Jon Underwood in his lounge in Hackney, London. Interest soon spread and the movement has gradually grown to other towns and cities all over the world. It is a comfortable environment which provides warmth and often surprisingly humour, where you can discuss death and related topics.
Some people who know me may ask why do I go after all I am only 50 years old and surely it is too early to begin thinking about my death. Well sadly yes, I do have to think about my death. For on November, 21, 2016, I was diagnosed with terminal bone cancer.
I could never forget that day without my diagnosis as it was my daughters ninth birthday. This diagnosis came after two previous diagnosis of breast cancer one in 2011 followed by 2014.
Cancer is something that my daughter has grown up with she has never remembered a time when it did not feature in our lives. Thankfully, the hospital believes they can keep me going for quite a few years, as this cancer is a bit of a slow burner and a bloody inconvenient one at that.
I was just finishing my degree in History that I had undertaken as a mature student to improve the quality of our lives. The University were amazing in their support and fully encouraged me to get to the end, which I did graduating last October with all my other fellow students. I would say that the cancer propelled my determination towards completion.
What I found when I was diagnosed was that everyone regularly said how bravely I was fighting the disease, few however wanted to talk about my death.
I am fully aware of how I will die (the power of the internet) and I know I will go to the hospice to do it.
Having received home care after breaking my hip and being discharged from hospital five days after an operation on the hip to insert metal rods, believe me the hospice is the place to be for me. As a single parent, I have very few family members to support me in the home, and to be honest, I do not wish to burden them with my last days.
So why do we shy away from discussing death?
As an historian who researches a lot of local history, I used Holbrook as the subject of my dissertation, I have looked how we dealt with death in the past. With a lack of hospital and doctor intervention pre- NHS families mostly nursed their ill at home, occasionally the old could be housed within Tattingstone workhouse and families would return for them to bury.
Upon death the local carpenter, who also doubled up as the undertaker in Holbrook, would visit and measure up for the coffin. The older women of the community would help wash and prepare the body for burial. The body often would lay in the front room, in plain view of all that lived with in the dwelling.
In modern times, we now outsource the whole death process to hospitals and undertakers, the latter who charge a good premium for doing so. The family has control removed from themselves and death is sanitised so that we do not have to deal with it as we used to, it is a subject we now avoid discussing.
When I talk to my sons about my demise they often say, “don’t be morbid mother”. The charity Dying Matters claims that 70% of the population are uncomfortable talking about death.
At Death Café I am not told that I am not morbid, I am looked at as being practical, a single mum who just happens to be looking down the double barrel shot gun known as death.
A mother who wants to just live long enough to see her daughter go to prom. A woman who instead of looking forward to a creation of a new career is planning her own funeral. At death café I can discuss my funeral arrangements without being perceived as strange. I want my funeral to reflect my love of life and at Death Café I can discuss what type of funeral, hymns, songs and music to have. I feel that this gives me some control over my life as well as my death.
At Death Café you can just be truthful about how you feel about dying, what is out there afterwards, I know as each week passes I look for answers as to what will my afterlife be like. I do have the wonderful vision of my heaven with Elvis, Ghandi and Nelson Mandela as my neighbours.
Exploring death with discussion with others also plays an important role to prepare my daughter who, at only 10 years old, is fully aware that her mum is only going to be here for a shorter time than her peer group's mothers. While her friends will have the nurture and support from their mothers until adulthood she may well not have this. This knowledge helps her to view our time together as valuable and precious and that we should live our lives before our lives outlive us.
One of the participants at Death Café has extensive knowledge of supporting children through the death of a parent or close family member, having worked in hospice care and research. I have found her writing to be a very valuable asset to my library.
If you feel Death Café could help you please come we meet every other month on the first Sunday, next meeting is May 6 and the refreshments are outstanding.
Death Café at St Michael’s Church Woolverstone, Sunday May 6. 11.00
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