Samantha Lanier - facing death by enjoying life...
Leaving Mum's Body To Science and Writing A New Book
Christmas was not the family event I thought we would be having.
Number three son was staying up in Glasgow and my mother sadly spent all Christmas in hospital, with what we thought was an appendicitis that turned into an infected Gall Bladder with a stone blocking her bile duct for good measure. Many bags of IV antibiotics and a very scary episode of my mother going into shock after a drain was fitted, my brother and I thought that she was going to die in front of us. My mother said a few days later that she thought she was also going to die that day as well. Thankfully for her family she had already discussed the prospect of her demise with hospital staff who were aware of her DNR request. She does not want to be brought back to life in an incapacitated state and I have to say I totally agree with her.
My mother has left her entire body to medical science, upon her passing my brother will contact the medical department at Cambridge to advise them my mother has died, and they will arrange to collect her body. Her body could be used for a full three years by one medical student as a valuable learning tool.
Initially I did not know what leaving your body to science entailed until I read a fascinating book by Sue Black called All That Remains A Life in Death. Sue Black is a professor of Anatomy and Forensic Anthropology at Dundee University; the early part of the books explores her early experiences of death and our society attitudes towards the discussion of death and all things related. It also explores further Sue’s career in many aspects of death.
The student will not be aware of my mother’s identity or anything accounting to her life and her history. This procedure is adhered to so that the student can mentally separate the death of a fellow human being from the work that they are doing. I was surprised when my mother told me of her plans- she feels that there will no one willing to tend to her grave as I will be gone soon and the boys al have their own busy lives. There will be no funeral and hence no funeral costs, I have however suggested a memorial service could be held after, if that is what we feel as her family may need for closure. We will get her ashes returned to us by the medical school after they have finished using my mothers body, it is the medical school that will carry out the cremation not her family. We have discussed that it would be nice to scatter them at the sea as my mother loves the seaside and always has.
It is good to discuss your desires of what you would like to happen after you have died so few of us do and this leads to your family not always knowing what to do for the best, I wonder how many of you have had these conversations. At my dad’s funeral it was discussed that we should all wear football shirts as he so loved the game. I have never owned a football shirt and I never intend to, so it goes without saying that I never wore one. My dad was a stickler for dressing up for funerals and saw it as a sign of respect, I think he would have been mortified to see people dressing down.
After one of the quietest Christmas I can remember for a long time I popped up to Glasgow to see my son. Glasgow is a lovely vibrant city with so much to do and see, so many museums and galleries (Cloisters pictured right). Which sadly some were closed so I hope to go back soon and catch them open.
Apart from more travel this year Northumberland, Cornwall, Liverpool and Poland what else lies ahead for me in 2019. Adelaide will finish primary school, mixed emotions on that one, sad she is leaving primary, not sad that I will never have to do the school run again (slept through the alarm each and every day since returning) and definitely not looking forward to all he dramas that high school will produce.
I am hoping to arrange a table trail around Holbrook village to raise funds for the new memorial, adding a further 12 names to the to the original 24 who lost their lives through the conflict of World War One.
I will start research for my new book, which I intend to look at each village on the peninsula and record at least one woman from history and one woman contemporary. A short synopsis of each village then and now. I will look for women with unusual pass times/extraordinary hobbies and interests, women who run successful business ventures or women who have supported the community in various ways. If you the reader has any suggestions of women who you feel could end up in my book, please feel free to contact me as the more I have the better the read it will be.
Once again, I will fundraise for the publication and donate the proceeds to the women’s light house fund which supports women and children fleeing from domestic violence by giving them a safe place to stay.
So really, 2019 will be the usual for me that is in totally refusing to slow down and give into Cancer, by the way I cannot wait for the warmer weather though.
Life May Be Unfair But I Have Been Through Too Much Not To Enjoy What Time We Have Left
My first diagnosis of cancer was a massive shock as I was only 43 and a single parent to a very active three-year-old. I had my initial operation on the 2nd January to remove the lump from my right breast and a section of my left breast to balance them out. I also had lymph glands removed for testing.
To be honest nothing can compare you for the pain of post op it was truly take your breath away pain. The lymph glands removed for testing had shown significant cancer cells, so I had to go back into hospital to have most of them removed, which long term resulted in lymphoedema and a constant consideration of not to injure this arm as I could get a serious infection. This also means I cannot use a hot tub or sauna as this causes my blood pressure to drop and for me to faint. The hand swells constantly and I cannot longer hold scissors to cut hair for longer than 30 minutes, so that ended my new career as a hairdresser. Following that it was six rounds of chemotherapy and with the steroids I ended up looking like a fat, bald thug from a gangster film. The loss of hair is such a profound experience as hair defines a woman’s femininity.
The only time I really did cry was the day my friend Suzanne had to shave my hair off as it was falling out in handfuls. I seemed to get all the side effects chemo throws at you except sickness, the anti-sickness medication is amazing.
It takes a good year or so to fully recover from this treatment after all it is a poisonous toxic substance is Chemo. I had done everything they asked took all the treatment and bloody hell it came back again after three years, thankfully just another lumpectomy this time and some radio therapy followed by a 12-weekly injection. Then blow me down three years later I am in a doctor’s room having her tell me it is back again, only this time it is terminal.
It had started about 4am in the morning of 20th November the cat had jumped onto the bed and gave me a shock, so much so that I jolted and felt a sudden sharp pain in my right leg.
The pain was off the scale but I somehow managed to hold out and get to Adelaide’s ninth birthday party, I was in so much pain I looked ill people said and Adelaide’s dad insisted I go to hospital for a check-up as he did not want to leave me in such pain. When I watch the BBC series Ambulance I am always amazed at how trivial some of the call outs are and will never forget the face of the nurse when I said I got to A&E in a normal car with no pain relief. Why would I need an ambulance I thought I had just pulled a muscle I tried to kid myself I think. Well a few x rays later and the decision was made to keep me in and transfer me to the cancer ward as soon as a bed was available which within a few hours it was (sadly this meant that someone had just died for a single room to be free).
The doctors decided surgery was needed to put all my hip and leg back to its rightful place and lots of metal was needed to do so. I feel that I should be bionic now but to be honest I am exhausted most days, the constant fight my body must produce to keep going is exhausting. I had to continue with the 12 weekly injections and had to add some tablets and another very clever four weekly injection. This injection acts like cling film over the bones and stops the cancer pushing the calcium out into the blood system. If the blood gets too much calcium in it then it becomes toxic and over time the bodies main organs cannot cope and gradually the begin to fail and you die of organ failure. At this point you hope to be off your head on morphine and will not know anything about it anyway.
However, much I enjoy looking at the past I am very grateful that I am part of this modern world and in the here and now as two years have just passed since my diagnosis and within those years I have achieved a lot.
My degree, my book, travels with my children and friends and my work for the Armistice celebrations. I am working towards a project to add some new names to the memorial in Holbrook, I hope to start work on a new book after Christmas. I am learning new skills all the time and increasing on old skills. However, I look back on this time I can say that I have not wasted it thinking about how unfair life is but by grabbing as many experiences as I can and making the time I have left count.
I have just recently had a lovely holiday in Ironbridge Shropshire. One day was spent at Blist Hall Victorian Village where you can meet the residents of the village and find out all about Victorian life. The chip shop that cooked in beef dripping was a favourite of mine and Adelaide loved the sweet shop and the candle maker, although the smell of tallow candles takes a bit of getting used to. There was also a Tile Museum, Iron Museum, China Museum and a very engaging children’s science museum which put all the theory of the Industrial age into practice.
It was an excellent week especially as my good friend Sue from Norwich came, she done the bulk of the driving and cooking. Days out followed by an afternoon nap. It was amazing how much having an extra pair of hands on board made such a difference, I am so used to doing everything on my own.
Whilst walking around the museums you realise that 150 years ago just how inventive industry had become which helped fuel the Industrial Revolution. However, medically we were still in a waste land whilst industry ploughed ahead. I am a huge fan of the Victorian age, but I would not have survived to my mid 40s let alone my 51stbirthday.
Volunteering And Remembrance Works For Me
For the past 14 months I have volunteered at the Quay Place in Ipswich. The Quay place is a building that was renovated from a redundant church and is a heritage and wellbeing centre run by Suffolk Mind.
Every Monday between 10am and 12 noon I sit down with a group of volunteers to make poppies, we knit, crochet or cut out poppies as well as leaves and stems. In total we have made 2018 of them which was our target. The poppies will be displayed from Nov 5 for at least two weeks within Quay Place. The display will form the back drop of a variety of events. On November 5 there will be a day of information and a workshop on PTSD in the afternoon. A display of information unearthed on the stories of the 22 men and a service of dedication from the Bishop in the evening. Thursday, November 8 there is a music and poetry evening featuring Royal Hospital School.
All these events are free to attend, and the display and research should be available to view most days of the week. Please feel free to visit. The above has been a collaborative effort of a group of volunteers from all walks of life and of all ages. After researching all 192 men from Holbrook on my own it was a relief to have a group to work with.
I have also given a great deal of my time to support the Holbrook Society in its research and presentation of an evening of remembrance and looking forward to the peace and life after the war, this takes place on Friday, November 9 at 7pm and is also a free event.
Once again, my research into many of the soldiers will be on display and I may have just a few copies of my book left to sell, it is hoped to leave the display up from Friday till Monday with in Holbrook Church. Not only have we been working on the content of the evening many of us villagers have been making poppies as well for a display. I hope to have engaged the local playgroup as well and they will be making some rocks decorated with poppies that can be placed on the war memorial. It is important that all ages and groups within the village get a chance to show their respect in a way that befits them.
Now that November is rapidly approaching we are coming to the end of our Quay Place project the folk down on a Monday have enjoyed themselves so much they would like to keep the group going, so the decision has been made to continue. The group will still be on a Monday but from 10.30-12.30 and we are going to be making Fidget blankets for dementia patients. If you have any old wool and items that look that they may be suitable to be attached to the blankets, please get in touch as they would be gladly received or if you would like to come and have a go at making one than you are most welcome.
Volunteering has helped me keep a sense of myself and to also stretch myself a bit but not to overdo it. I have been able to use my skill set that I acquired whilst studying for my degree, to not use it would be criminal in my opinion but as I have said before there is no chance I could get a job and hold it down not with my illness. It has helped my emotional needs,
Ginny Idehen, from Suffolk Mind, told me: “We all have emotional needs that must be met in order to stay well – things like achievement, community, attention and having an emotional connection with someone.
“Sometimes challenges that come along in life can stop us meeting some of those needs. Our Poppy Project enables participants to feel connected to the stories and people of the past. They are achieving a great deal by making poppies out of many different materials and expanding their knowledge as they learn about those who fought and died in the war and people who lived and worked around Quay Place.”
There are four main reasons why you volunteer according to vinspired.com:
To give something back
On a basic level, volunteering offers the chance to step back from our everyday lives, appreciate what we have and contribute back in whatever way we can to those who perhaps aren’t as fortunate.
To develop career prospects
Volunteering can do good for others - as well as yourself. So it’s a great way to build skills and experience to develop your career.
Why not combine the good you can do through volunteering with the chance to explore the world and embark on an adventure in far-flung places?
Try new things & have fun!
If you think that volunteering is all work and no play - think again! Young people all over the country are using their passions to spread positivity to others, enjoy new once in a lifetime experiences and meet amazing new people along the way.
I am using my volunteer experience not only for my wellbeing but to also to give a vital something back and that vital thing is knowledge, knowledge of the past and how it shapes our future.
If you feel that volunteering could offer you an opportunity look at the link below and consider what you have to offer your community.
Putting Things Into Perspective
I was going to write my blog about my holiday in Cornwall and have a big old rant about Chelsea Tractor drivers and gentrification of the Cornwall coastal region, I had written it whilst I was away but something inside me said do not email it to Derek just yet, sit on it for a week and then send it.
Adelaide and I visited some amazing gardens in Cornwall Trebah, Lost Gardens of Heligan and The Eden Project. What took me by surprise about these places was that Adelaide embraced the beauty of the spaces and really enjoyed herself. Minack Theatre will remain with in my memories as one of the most special places I have ever seen and Adelaide receiving an impromptu drama workshop was a real treat for her.
Clovelly was a test of my endurance as I struggled to descend the path down the village and was truly afraid that I would fall, thankfully I did not, and a much-needed Land-Rover was available to take me back to the top to the visitor’s centre.
Driving to Cornwall was an exhausting trip even if you are fit and well so I opted to stay in Dorset for a few days to recover then set upon the journey to Cornwall.
While in Dorset I spent a day at my favourite animal sanctuary Monkey World, but a massive reminder of my illness came to slap me in the face. This was that I could only really do half the park, the bottom of the park was far too long a walk and far to hilly for me. Yes, they did have mobility scooters I could use but I flatly refuse to admit that I am near that stage of need.
When I realise how limited I have become I can get quite frustrated and annoyed with myself, as I hate not being able to do as I wish. Adelaide and I stayed in Youth Hostels which kept our costs down, where else can you stay in a Victorian mansion or on a cliff top for prices under £50 in some cases?
Most of the hostels we stayed in had also been recently updated and renovated and facilities were excellent. It also breaks up the isolation that occurs when you holiday as a single parent as there is always some- one else around to chat to.
So, what changed my mind about the rant? when I returned home I received news that a dear friend of mine had died, it was one of four deaths to cancer that I heard of within a week and a rant about posh pretentious folk in their big cars seemed pretty insignificant.
The journalist from BBC who was not known to me personally Rachael Bland who was only 40 passed away, she had a three-year-old son who she had spent the last few months making precious memories with. Those last weeks with her son must have been bitter sweet knowing that she would never see his first day at school, stand along a sports field in the freezing cold cheering him on or pick him up when he falls of his bike after the stabilizers are removed.
A neighbour’s aunt who was not dissimilar to me in age and a local horse/animal woman, the latter being extremely swift and really did stop people in their tracks and say how come? So, you can see a rant was not the best way to think.
When I moved into Holbrook I was warned that moving into a small village would take years to be accepted, and as I knew very few people it was a bold move on my behalf, but I truly believed moving to Holbrook would provide Adelaide and myself with a greater quality in life as opposed to the small housing estate in Ipswich we left.
J had lived here since the early 1960’s and was well known in the village and was one of the early villagers to welcome Adelaide and myself with an openness that is rarely seen today anywhere. I first met her properly at a garden party that she was hosting for a charity to send another villager to Moldova to assist in the building of a school and toilet block. We got on very well and Adelaide took to her and just adored her, our paths began to cross at regular events and a friendship was cemented.
J was kind not only as a person but with her time, she had so much of it for other people and her patience was legendary. She had taught so many people to knit and crochet and was very active in the Knit In group at the chapel where she had many 100’s of items for various charities. She had knitted more than 100 poppies for my Ipswich project, not to mention the leaves as well.
J had undergone surgery in the last two years to hopefully restore her health. However, J remained much slower on her feet that she liked but her persistence into getting to the reason why this was so lead to the diagnosis of cancer. Both sharing this illness our friendship deepened as we fully understood each other’s battles. J and myself could be truthful with each other without fear of upsetting ourselves and we could avoid tip-toeing around the issues (something you must do sometimes with family or friends).
I will miss her terribly, a routine of popping in to chat whilst on a dog walk (Cordelia still pulls towards her gate expecting to go in). She was an exceptionally strong woman who suffered a great deal of pain (even though she never complained about it, she was just annoyed it was stopping her doing as she wished). Having experienced this type of annoyance myself especially when I was on holiday made me think how alike we had become. I visited her on the Sunday, six days before she died, and she was still crocheting something for my display. Cordelia was so pleased to see her promptly jumping on her bed and showering her with licks, we shared a lovely 90 minutes together just talking and laughing.
I am very proud to say that she was my friend and that both of us had taken the time to form a friendship, I hope that in my final last weeks I can hold myself with the dignity and courage as she did. Goodbye my dear friend it is not only myself that has lost, but the community of Holbrook has also lost a great friend.
Simple Acts Of Kindness
After my last blog regarding my bucket list I received the most amazing message from a local couple. The couple are owners of an Aston Martin and offered to take me out for a ride in it. If you remember a ride in an Aston Martin was very high on my list, to cross off another item on the list is fantastic.
This lead to me thinking what such a simple act of kindness this couple was offering me, then I began to think how lucky I have been in the kindness shown by others towards my daughter and myself.
Just under a year ago I mentioned how much I wanted to learn the piano, amazingly Jane Gould stepped in and offered to teach me. We’ll all I can say is how grateful I am towards Jane for this offer but oh my it is possibly one of the hardest things I have ever tried to do. Not only do I have to learn where the notes are on the piano they must match the notes in order on the paper in front of me. Also, being in the correct beat and speed and the abbreviations are in Latin, believe me when I say it is a struggle.
If I ruled the world Jane would get a saint hood for her patience which if you did not know would be a world first as you cannot be made a saint unless you have been dead for at least five years, so not wishing Jane an early death just a massive thank you will have to do for now.
Then there is Norma, Norma kindly gave up many hours of her own free time to work on my book. She took many days getting the information into a form that is recognised as print ready, she even found me a printer, all this was also going on when she had to visit Canada for her mother’s funeral. Norma was a total star as this enabled the book to be printed and I have almost sold out helping to raise funds for the Holbrook memorial project. You will hear more about this event in later blogs believe me.
I recently attended a Sunday evening talk at the Methodist Chapel in Holbrook by Roger Fern a local lay preacher but also ex-mayor of Ipswich and IBC councillor. Roger talked about his role at IHAG and the hardships that people have faced since the rolling out of Universal Credit in the area, and that this was leaving families without income for weeks sometimes months. These families were facing eviction and having to resort to using food banks to feed their children. I explained that my serious illness I have been classed in the unable to work group but was worried how Universal Credit would affect me, would I suffer the same fate as other families and be unable to feed us or be under threat of eviction due to delay in payments. At the end of this session a member of the congregation came up to me and placed her address in my hand with instructions that if I was ever in this need please contact her and she would help. I hope I am never in the position that I must ask for help but to offer such a life line to somebody is an amazing and selfless act of kindness. In an age when we obsess so much about what we as individuals own and how to let the world know it, to offer such kindness is truly awesome.
About three weeks ago my television broke, not only is it a TV it is also a radio which I like to leave on Classical FM for the dog, but it is also my DVD player. I mentioned in passing to my neighbours that this has occurred, and they offered me an old set of theirs. They had just returned from a family BBQ and judging by the redness in their cheeks I can assume they had a good time. I told them to sort it out tomorrow but no they insisted that evening to sort it out for me so straight around they came and promptly put it up on its bracket. I have to say this is the neighbour who often is seen head first climbing through my bathroom window because I often lock myself out, any way for some strange reason this new TV also died on me within a week. The house is much tidier and all those little things I keep putting off finishing, well they seem to be getting done, I think I may crack in the winter without it when it is cold and dark so will have to save for a new one I think.
When I first found out about my tumour and I had fractured my hip barely able to walk the good old NHS decided that despite living on my own and had no way of getting up to my bedroom it was time I went home. My neighbours Pete and Sarah removed my sofa from the lounge and erected a spare bed in the lounge for me, on top of looking after the cat for me as well. Also, all the parents at school who help me with care when I must go to hospital for appointments and tests is amazing.
Adelaide is not untouched in this either as a child with a parent who has a terminal illness she receives support from Suffolk Young Carers, they give her valuable days out that let her be just a 10-year-old girl having fun. She has just returned from a day trip to London and has also just received 12 hours of horse riding lessons. All this enriches her life and help improve her confidence. They also offer counselling and support in bereavement when she will need it.
All these acts of kindness done for me are testimony of man’s goodness towards man, as we regularly hear so much about how bad natured people can be towards each other. We do not hear about the good and kindness that happens.
Adelaide and I are so lucky to live in such a caring community in accepting us into the village and offers of help and support.
It does not take a great effort to be kind or show an act of kindness, if we all just tried that little bit harder to accept people and give a bit back I believe the world would be a better place.
Go on try it see if it changes your day, I challenge you even the smallest of acts of kindness can make a big difference to someone else’s day.
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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