Not Quite Ripley

Eulogy to Deb: This is Ripley, Signing Off

Posted on August 30, 2015 by dolly61

The beautiful eulogy given by Beverly Edgington at Deb’s Funeral on 10 June, 2015, inspired by the words of remembrance of her friends, family and acquaintances, seems a fitting way to conclude the ‘Not Quite Ripley’ blog:

Daughter, Sister, Aunty, God-Mother, Fairy God-Mother, Deborah, Debbie, Our Deb, Yumpy, Deb Deb, Princess Deborah of Kentish Town, Best Friend, Dolly 61, Dilly Dolly Daydream, Ripley or just plain Dolly. So many names for just one person. But for a person whose love of words created a bond with so many people, how fitting that a plethora of descriptions were required.

I am sure that it will come as no great surprise that Dolly (excuse me if I use my own term of endearment) Dolly and I met in a cocktail bar. It wasn’t any old cocktail bar, but again that should come as no great surprise either. We met in St Lucia on what was the first night of my holiday and about the 4th of hers. Dolly had an ear infection and thought she was speaking very loudly when in fact she spent the night whispering. I couldn’t hear her and she couldn’t hear me! And from that a great friendship was born! We laughed at each others jokes despite not having a clue what the other was saying and each time she whispered something I just nodded, each assuming we had said something along the lines of “do we need another cocktail?” and the rest, as they say, is History. We are the epitome of the Holiday Romance that worked. Dolly, a girl about town from North London, frequenting Selfridges and Harvey Nichols as often as I, the stay at home Mummy from Essex, frequented Tesco and Mothercare – it shouldn’t have worked but it did. And for that I will be eternally grateful.

I am acutely aware that I could stand here for far too long describing my relationship with Debbie. About the fun and games that we have had along the way. About the places that we have visited, the bars we have drunk in and the bar stools we have fallen off. The cocktails we have sampled, the champagne corks we have popped, the wine ‘flu we’ve suffered from and of course the shopping SHE has done. But is that me or all of us? I could equally stand here and tell you about the quiet times, the whispered conversations about hopes, dreams and more recently fears. The fairy stories she has read to our children and the desire that each and everyone of them pursue their dreams. The words of encouragement that she has said to me and I to her. But is that me or all of us? Despite a distance of 5000 miles between us we were closer than ever in the last 12 months. I was blessed to have been able to be “entertain” Debbie in my new home and the island adopted her as if she were one of their own. Equally I was so happy to be able to spend time with Dolly in her very own Little Yellow House. As I have already said, it shouldn’t have worked but it really, really did. Even as close as the last Christmas we spent together, unbeknown to any of us we all purchased Forever friend bracelets for each of us to wear. I tried, when I received the call, to get back but you don’t realise how far 5000 miles is until you can’t just magic up a Dr. Who teleporter, or the Mother Ship. I will never be able to thank Andy and Nicki enough for placing my bracelet in Dolly’s hand so that she knew that I, and all us, were there with her. Andy, you have those bracelets now and guess what – you are stuck with us!! Another of Debbie’s legacies!

This is not just about Debbie and I. It is about Debbie and her relationship with each and every one of us here today, or those of who are here in mind and spirit. So I have “borrowed” (fear not, no plagiarism) words that the family, Nicki and I have received over the last dreadful week. Words of encouragement, words of support. Words of remembrance and words that others have used to describe their relationships with Debbie and the effect she has had on their lives. One of the most stand out lines that made Nicki and I turned to each and smile was the one-line prayer “Let me not die while I am still alive”

Debbie above all else you were an awesome and inspirational lady to so many. Everyone who met you wanted to know you more. You spurred me on to writing sillier and sillier things. “With a John Belushi look to the camera and a bashful but blatant wink”. A delightful lady, a scandalous heroine, generous and caring and naughty to the very end. A mischievous sense of humour combined with inspirational courage. An incredible combination of things, topped up with champagne and bottomed out with only the very cutest heels. Easy glamour but without even a touch of frost – instead a bubbly, giggly, warm, glowing girlish delight. Gorgeous, generous, inspiring, intelligent, beautiful and of course witty. A woman with a beautiful spirit and wonderful smile. Debbie inspired trust but also gave people a reason to believe in themselves and re-find their self-respect. Knowing Debbie makes someone a better person, she inspired confidence and self-confidence. But Debbie was the type of person that you couldn’t just “know”. Her merest presence lifted people’s spirits, challenged and then made them snort with laughter. She was a force of nature. She made you think how small and precious life really is. How you can be grounded just as you take off. She leaves us knowing we have benefited from knowing her. Debbie loved beautiful things and thought that the Rothkos at the Tate belonged to her so how fitting that some of those who cannot join us today are in fact meeting in front of the Rothkos.

Whether in person, or on-line. Whether quiet conversations or a short text. Whether a witty repartee using only 140 characters or a thought provoking blog, Debbie has left an amazing legacy behind through her eloquent and elegant use of the English language. Debbie would be “chuffed to pieces” that her blog has been read by nearly one thousand people in 39 countries in the last week alone. That the hashtag Dolly61 trended for a while and that Clare Balding tweeted a message of condolence.

The last time I was with Debbie it was her birthday. I hugged her tight and said “See You Soon” and I meant it.

Rest in Peace in the knowledge you are the recipient of all the love that we possess. Rest in Joy.

Raise a glass of vintage champagne to the greatest cocktail party ever to be known with each and every star of bygone ages vying to get the attention of the brightest star we all had the pleasure of knowing.

Whisper “Be Good Sweetheart” and listen closely for the response which will be a cheeky “I’ll try”.

More than Chips.

This is Ripley, signing off.

Posted in anal cancer, Death, funeral, remembrance, terminal cancer, Uncategorized | 1 Comment

Deb’s Farewell

Posted on August 16, 2015 by dolly61

As spoken by me, Nic Cottham, at Deb’s funeral:

I’m pulling up my Big Girl’s Pants, as Deb would say. I am also putting on my old lady’s spectacles. Deb used to say that I would need them too one day and she was right, of course.

I could stand here all afternoon and tell you about my beautiful friend, Debbie and only scratch the surface of the amazing, multifaceted woman we loved. But you don’t need me to tell you how uniquely special she was. Many of you have known Debbie far longer than I have. And I am going to leave it to Beverly to share some of her and your tributes to Deb a little later. Suffice it to say that we have been quite overwhelmed by the outpouring of love and admiration for her.

It was an enormous privilege to have Debbie’s love and friendship in my life and an especial privilege to be there at the very end of her life. We were all astonished by the grace, fortitude and the unfaltering wit with which Deb faced such a very difficult illness, the trials it sent and the knowledge that she was going to die so very much sooner than anyone would have hoped.

It gives me great comfort, and I hope it gives you some comfort, to know that, when the time came, Deb died very peacefully and surrounded with love from near and far. As we had promised her, during Deb’s last moments, I held one of her hands and her big brother, Andy, the other. I told her every loving message that was entrusted to me for her and passed on every kiss and gentle hug that was sent. Occasionally she was able to smile and we knew that she had heard us. Yet more people who didn’t know that the time was coming quickly to say goodbye to her loved her deeply and she knew that. I told her that the love we held in our hearts for her and her love for us would never die.

A few days later, we found instructions written by Debbie very shortly before she died including a request that this poem was read on her behalf today. It’s by Gitanjali Ghei and is called “Farewell My Friends”

“It was beautiful as long as it lasted, the journey of my life.

I have no regrets whatsoever save the pain I will leave behind.

Those dear hearts who love and care and the heavy with sleep, ever moist, eyes.

The smile, in spite of a lump in the throat and the strings pulling at the heart and soul.

The strong arms that held me up when my own strength let me down.

Each morsel that I was fed was full of love divine.

At every turning of my life I came across good friends,

Friends who stood by me even when the time raced by.

Farewell, farewell my friends.

I smile and bid you goodbye.

No, shed no tears for I need them not; all I need is your smile.

If you feel sad think of me for that is what I’d like.

When you live in the hearts of those you love, remember then… you never die.”

Posted in anal cancer, Death, funeral, remembrance, terminal cancer | 1 Comment

A Celebration of Deb’s Life by Tiu

Posted on July 26, 2015 by dolly61

Our Deb
4 May 1961 – 30 May 2015

I would like to share with you here the beautiful words of remembrance of Tiu de Haan, the celebrant at Deb’s funeral which took place at Lytham Park Crematorium on Wednesday 10th June, 2015. I will also share the other contributions to the service in celebration of Debbie’s life in future blog posts. Nic

Welcome to this, the funeral of Debbie Wells.

We are here to celebrate a woman whose glamour, courage and indomitable spirit is absolutely vivid to all who knew her and loved her, even to those who, like me, never met her but who know with absolute certainty that, today of all days, it is appropriate to wear the sparkliest high heels available.

In the weeks before her death, Debbie, or Dolly as many knew her, sent a gift to her dear friend, Lynsey. A package arrived in the post containing a slender, silver bracelet, engraved with the letters “WWDD” which stand for the words: “what would Dolly do?”

It’s an excellent question.

Luckily, today we don’t have to guess at the answer. Debbie, or Dolly, wrote to me in the days just before she died to make sure we knew exactly how she wanted to be celebrated and mourned, from her favourite quotes to the music she loved. Debbie and I struck up an instant friendship in our all too brief correspondence, one full of humour, honesty and the courage that I now know goes right along with her penchant for fabulous footwear and the finest champagne. In the last email she sent to me, she wrote the following words, which I know she would be happy for me to share with you. She wrote:

“Tiu, during this process, something wonderful has happened. Not only have friends and family rallied round, with my bestie Beverly flying in from the Cayman Islands to stay with me and Nicki unflinchingly holding my hand and getting me to my appointments, and my brother Andy, who lost him Mum and now his kid sister, travelling down from the Midlands to help – and who still has a sense of humour, but also strangers have come into my life, my two carers who have turned into dear friends, and now you, thanks to my darling Half Pint”

To find such cause for wonder, for gratitude and for such deep appreciation even in such adversity, is a perfect answer to the question What Would Dolly Do. As she wrote in her notes, quoting Dr Zeuss:

“Don’t cry because it’s over, smile because it happened.”

Debbie also wanted me to share a brief biography. She was born on the 4th May 1961 to Fred and Betty Wells, the little sister to her dear brother Andy who was four years older, She grew up here in Lancashire in a close, maternal family. Her mother Betty sadly died of asthma in 1970 and had her funeral right here in this very crematorium, as did Debbie’s maternal grandmother. When Fred married, his new wife Jill expanded the family to include Debbie’s step siblings, Paul, Chris and Wendy, and they all moved to the Midlands when Debbie was ten years old. When she grew up, she had various jobs in the hotel industry and moved to London in the 80s, where she met Nick Carnell whom she married in 1992 and divorced in 2012. Diagnosed with cancer in 2011, Debbie documented the process of her relationship with the disease she called her “alien” in her brilliant, funny and beautifully written blog, Not Quite Ripley, until her death almost two weeks ago.

She wrote, she sang and perhaps her proudest achievement was attaining her BA Honours degree in humanities, specialising in the History of Art and graduating in 2009.

But while her life can be described in facts, what really matters is the love. When I met with her best friends and her brother and niece, or Team Dolly as they are rightfully known, they told me that Debbie was the lynchpin of an extended family encompassing Bev and Nicki’s children as well as her own nieces. Even though she didn’t physically give birth, they told me, Debbie had six children. Andy’s daughters, Becca and Rachel, Nicki’s daughters Celeste and Tasha – who Debbie called Elmo – and Beverly’s daughters Grace and Emily, known to Debbie as Mimi. She considered herself their great aunt – with the emphasis on GREAT, as in fabulous, to Becca’s children, Darcy and Charlie, and she was incredibly excited about the new arrival who is due in 8 more weeks.

There is a particular poem she wanted to pass on to all the children, big and small. It is by Gina Hanson and it is this:

“There is a freedom waiting for you
On the breezes of the sky
And you ask, what if I fall
Oh my darling, what if you fly?”

She also wanted to remind them all of the words of Winnie the Pooh:

“You are braver than you believe, stronger than you seem and smarter than you think.”

On that note, I would like to invite her dear friend Nicki Cottham to say a few words and to share a poem for Debbie.

[Nicki’s contribution will be shared in a future blog post.]

Thank you Nicki.

Debbie was also very clear that she wanted everyone here to be free to honour her memory in their own way. She wanted there to be an opportunity for those who pray to do so and for those who want to reflect on her life and her death to be able to do just that in whatever way is meaningful to each and every person here. So although this funeral service is too small a container to do justice to all aspects of Debbie’s life or to encompass all the emotions we might feel, this is an opportunity to take a moment to hold Debbie in our thoughts, and in our hearts, as we listen to the music she chose for this very purpose, which comes from the movie “Up”.

[‘The Ellie Badge’ by Michael Giacchino from the original score to the film ‘Up’.]

I would now like to welcome Beverly Edgington to read Debbie’s eulogy.

[Beverly’s eulogy will be shared in a future blog post.]

Thank you Beverly.

Now, before we head on our way and go and raise a glass of champagne to Debbie, there is one last piece of music which she felt very strongly about and which she had specially prepared for today. And as you listen to it, perhaps we can all ponder the last quote she wanted me to share with you all, which also comes from the movie “Up”:

“I’ve had my adventure, now go and have yours.”

Tiu de Haan
Celebrant

Tiu de Haan’s website

Posted in anal cancer, celebrant, Death, funeral, remembrance, terminal cancer, Uncategorized | 1 Comment

The Last Day and a Good Death

Posted on June 26, 2015 by dolly61

I’m Nic. I have been a close friend of Deb’s for fifteen years. For the last four, I have been one of the crew members on the Nostromo, if you will. I accompanied the protagonist as she lived with (don’t say ‘battled’; she hated that) her personal Alien, anal cancer.

I am a poor substitute for Not Quite Ripley. I don’t have her wit nor her way with words nor a shred of her courage. She would have definitely blogged her last day though had she been able. Sharing in her death was an awful and awesome privilege. It’s a further privilege to be able to blog the final chapter of this story.

Although we knew that the end was very near, it was very difficult to accept that the time had come to witness the final transition for Deb from life to death. On the Friday, she had had such a happy and productive day. I don’t know where she found the time or the energy to have all the conversations she had with so many people who were important to her. She had also found time to write her final instructions for her funeral, to brief an amazing non-denominational celebrant about conducting the service and to change her mind about her outfit! Typical Deb on a good day.

But the morning of Saturday 30 May came and it was obvious that we had to prepare ourselves to say goodbye and make the very most of an incredibly short time left with her. ’Team Dolly’ closed ranks. Geography played a huge part. Some journeys would be longer than others. Flights were hurriedly booked.

Thank goodness that Deb had developed a loving friendship with her next-door neighbour who was a huge support and her first point of call often including, critically, on that day. After the call came, some of us were able to be with Deb at the Little Yellow House in person. Others, in spirit. All were united in love for her and support for each other.

I won’t lie. Deb told it like it was and she would not forgive me for not doing the same. The morning was horrendous. Deb was reliant on high doses of morphine as well as anti-sickness meds etc. but she had reached the stage where she could no longer take her medication orally. This meant that no-one could control her pain or emotional distress until the relevant meds could be administered intravenously. Apparently, there should have been injectable drugs at the Little Yellow House in a locked box ready for this moment. There weren’t. So there was a regrettable delay. Deb would have been furious but I don’t think she was aware of it.

We did have a brilliant team though. Both of Deb’s beloved… she called them her ‘helpers’ but they were so much more than that, were on hand. One of these wonderful women specialises in hospice care during the final days and hours of life and she guided the rest of us every step of the way throughout the day and evening. One of the best doctors of the many we have encountered attended, sorted out the drugs and helped me to understand what was happening and what to expect. A lovely nurse came and cared for her, and for us. I don’t believe in omens but it seemed fitting that the nurse shared Deb’s cousin’s name.

Eventually, by early afternoon, a syringe driver was in place to continually supply the drugs Deb needed: pain killers, anti-emetics and sedatives. She became more peaceful. We had been told that some things would be more difficult for us than for her so we were prepared. The moaning she made we knew was either involuntary and/or positively comforting to her. Once the sedatives were in her system, we knew that the jerking of her arms was involuntary ‘terminal restlessness’. She was no longer ‘raging against the dying of the light’ as might have been the case earlier in the day. Deb would want me to share this tip for others in the distressing situation of worrying whether or not a dying loved one is in pain. The doctor showed me. You need to press your knuckles quite hard into the flesh at the centre of the top of the breast bone. If there is no physical flinch or grimace, there is no pain perception.

Deb’s big brother arrived. I was glad he hadn’t been there earlier. It was enough of a shock for him to see his little sis like that as it was. Our queen of words and wit could no longer speak to us and that was one of the hardest aspects of the situation to accept. But we knew that she was still aware and could hear us a lot of the time, although she would be almost certainly muddling dreams and reality now even more so than in previous weeks.

We continued to talk to Deb and to each other. Occasionally she smiled (although you would have had to know her really well to be able to tell that) and we knew that she had heard. We continued to make jokes to Deb and each other. Occasionally she smiled and we knew that she had got them. We felt, very keenly, however, the lack of Deb’s, usually superlative, contributions to our shared humour.

We took it in turns to make tea. There was a lot of tea. We’re British so what else?

We did everything we could to make her feel comfortable and loved. We held her hands and we looked into her eyes. We moved her to try to make her comfortable and we moistened her lips. We sprayed her favourite scents in the room and massaged fragrant oils into her dry skin. Deb drifted in and out of consciousness.

“I’m looking at you even though your eyes are shut.” I said that so many times. It was the comfort she demanded from me during difficult procedures, when she was scared.

We knew we had to say the most difficult words. We had to give Deb permission to die. “Stop fighting now, darling. It’s OK. Just rest now.”

“What music does she like? Perhaps we can put it on.” Actually Deb preferred to listen to the spoken word so BBC Radio 4 and 4 Extra drama it was. And more tea.

The signs that Debbie was making the transition from life to death were coming so quickly. The changes to her colour. The cooling of her skin. Her breath becoming more shallow and her moaning more quiet. It became clear that her darling best friend who was fulfilling a promise to try to get here was not going to make it across the Atlantic in time. We put the friendship bracelet they shared into Deb’s hand. A little while later, worried about the bracelet digging into Deb’s incredibly fragile skin, I took the bracelet out of her hand and put it on the bed cover nearby. Deb executed only one of only two movements that day that I could be sure were intentional; She picked up the bracelet.

Deb’s dad and step mum were at the end of the phone. They had made the very sensible decision to be at home rather than in the car. Lots of people were at the end of the phone. And on Facebook. And Twitter (as I learned later). Messaging by various means. There was an incredible outpouring of love and support for Deb and for the rest of us on Team Dolly. Over the hours, I passed on every word, gentle hug and kiss that was sent to Deb. People have asked me whether I think she knew she was dying. Yes, looking back now, I’m sure that she did. But, more importantly than that, she knew that she was loved very much and by very many and that she would be remembered.

The sun was going down and we could hear the birds singing through the open window. It was a beautiful day.

“Would you like a cuddle with your brother?” For only the second time, Deb made an obviously intentional movement and raised her arm towards him. And she made the only understandable utterance of the day, “Yes.” It was the most tender and loving of moments but I won’t intrude further on it now as we didn’t then.

It was later than I had realised. The sun and Deb were both fading very quickly now. The four of us gathered around her bed. Her brother held one hand and I the other, just as we had promised her many times that we would. Deb opened her eyes wide and looked right into mine for the first time that day. I can’t remember all of what I said. I know though that I told her that the love and memories that we all had created together would live on in our hearts and minds and would never die.

And then, at ten past ten, Deb died. There was no trace of stress or pain on her pale face. She was almost smiling. But she was gone.

It was simultaneously the most intensely real and the most surreal moment of my life.

It was a good death. It was the one that she wanted and planned.

It was Deb’s last day. We loved, we talked and we laughed. We drank an awful lot of tea. From near and far, we held Deb and we held each other. And we always will.

Posted in anal cancer, Death, palliative care, Planning for your future care (Advance Care Planning), Preferred Priorities of Care, terminal cancer | Tagged anal cancer, death, good death, terminal cancer | 5 Comments

Push button beds, finding out more about ascites from business end and words you don’t want to hear during a procedure.

Posted on May 23, 2015 by dolly61

Hi Gang, oh hang on let me just (zzzzzppp) that’s better just adjusting my lovely hospital style bed to the “sitting upright” position. Too far? (ppppzz) Oh there you are!

Well I’ve been busy as a busy thing here. The ascites (lymph fluid in cavity of abdomen) got up to 6 and a half litres. I looked like an orang-utan with a massive tummy which, while comical, hurt like heck as all my organs were squished. (Ask anyone who has been pregnant – ladies I salute you.)

Anyhoo, something had to be done and fast because it was incapacitating. Since then I’ve had the procedure twice and here are my findings.

Go to radiology department and doctor will use the ultra sound to find correct place to “puncture” for want of a better word your tummy thus collecting the frighteningly large amounts of lymph liquid. It’s full of protein so to compensate I ate protein rich food such as smoked salmon and cottage cheese for a couple of days beforehand and am still doing so.

Doc then freezes area before inserting tube into said area and attaching it to a bag. Then its a fun game of count the minutes until the bag gets really full. Shortest time was about 5 minutes. Its important nurse gets there quick so luckily I had lovely smily ones who certainly did. They also keep an eye on your vital signs. My blood pressure is fairly low anyway but this will lower it more in my experience. Drink water to combat this. As bits and pieces settle back down to usual positions it can hurt – badly IN MY EXPERIENCE. Pain is transient, it’ll go. Grit your teeth and talk to big brother and bestie. You may have a suture to hold the pipe steady. Don’t do what I did and catch it because it will cause you to do a big unladylike swear. Just don’t be so damn daft.

When said tube comes out the nurse will use a trick to ensure you don’t have your mind on it. I’m not going to tell you or it might not work if you know its coming.

Eventually you’re sent home, without tube, with a fairly flat tummy after a very tiring day. Be kind to self for a couple of days at least because it will feel like you’ve been punched in stomach and take a while to recover but move as much as you feel able taking it steady at all times. That’s pretty much it. Oh and the word you don’t want to hear in the radiology room uttered by doctor? “Whoops”

“Excuse me”, I said, “there’ll be no “whoopsing” here please.”

“I nearly sewed my finger”

“Oh, carry on then and be careful”.

I have such a rapport with medical staff!

Posted in anal cancer, ascites, ascites drainage procedure, palliative care | Leave a comment

A few wonderful hellos and a couple of sad goodbyes and I learn a new word for another symptom

Posted on April 5, 2015 by dolly61

I know, I know, I haven’t blogged for ages and the promise of every Sunday seems to have gone out of the window but from now on let’s just say I will blog when I have something I think is worthwhile saying. It’s easier and takes the pressure off.

So we’re officially into British Summer Time, the clocks have adjusted (even if our inner ones haven’t quite yet) and this weekend is Easter. The magazines are full of floaty clothes in pastel colours and the newspapers are full of election news. I must remember to apply for a postal vote soon.

The hellos I refer to are my family. My Dad and Step Mum spent their wedding anniversary with me which was lovely of them. I’d booked a table in a lovely pub/restaurant which we eventually found despite Dunmow’s famous phantom roundabout which doesn’t appear on Google maps or some sat nav systems. Always fun to arrive red faced and half an hour late when visiting a new place. Grr. Mind you the only person who was freaking out was me. Is there something about hitting a certain age that means these things don’t bother you any more?

My smashing big brother has been a couple of times, chip pan always carefully placed in the back of the car. There’s something so special I can’t explain about the two of us standing in my tiny kitchen knocking up some delicious meal and instinctively passing each other a spatula or the salt while chatting away. I cherish it.

A truly lovely woman died on 27th February 2015 and I was humbled that her partner came to see me soon afterwards and we had lunch. It was a little stilted because I think both of us didn’t quite know what to say and were so scared we’d say the wrong thing or reach for a hug when it wouldn’t have been appreciated but in the end I think her visit went ok and I was so very pleased she’d visited. The lovely woman? She was called Eva Hudson. Google her if you’d like and you’ll see what I can’t put into words.

When I got my prognosis I was allocated a Palliative Care Nurse from a local hospice. It’s a heck of a job and a heck of a relationship built on trust mainly I think. I’d had mine for about a year, just over, and she was off sick all this year. You can imagine how happy I was when she came for a home visit the week before last. I realised after a few months the relationship would need rebuilding. I had new symptoms to discuss and wanted to catch up. You probably can’t imagine how I felt when she told me she was leaving the hospice and this was her last visit. I understand people move on from jobs of course I do and there’s never a good time – this was a particularly bad one though. Oh well I met her replacement last week. It will take time to build up trust and some sort of relationship but we’ll see. Do I sound a little fed up with that situation? Yes well I was a bit to be fair.

So the new symptom and the new word. The symptom is bloating. My tummy is huge and uncomfortable – very uncomfortable. There’s just not enough space in there for my organs and whatever else is going on. My doctor (my local surgery continue to be just wonderful) has had a prod as has my new Palliative Nurse and they think its probably ascites. (yes there’s the new word to put in my bumper book of cancery words). Fluid basally. Lots and lots of fluid that at some point will need to be drained – and then drained again when it comes back. It’s painful, uncomfortable and makes doing normal things like stair climbing a chore again. Can you tell I’m not keen?

Right, sorry gang, you’ve had a right whiney one today haven’t you? Sorry about that. I promise I’m still finding plenty to have a laugh about and be grateful about but I wanted to blog this afternoon and this is what came out!!

Off for a bath now, then I can smell I’ve got a roast dinner cooking (Lordy I love my helpers so much!!)

Catch you later, Ripely out

Posted in anal cancer, ascites, palliative care, terminal cancer | 2 Comments

Spring is in the air and our heroine purchases a Thermos flask …

Posted on March 15, 2015 by dolly61

A while ago I waved off a couple of special people who had turned up with a bunch of beautiful flowers, some Singapore noodles, loads of gossip and some tight as anything hugs. It was great. I sometimes get so tired I have to put off visitors which I hate doing but not as much as I hate feeling my eyelids grow heavy as I chat with someone I love who has made an effort to come and see me. These days there’s no such thing as “a bit tired”, its either feeling fine or feeling banjaxed. It’s ever so annoying.

I’d already had some flowers as well as my next door neighbour knocked on my door to hand me some roses she thought I’d like. I do so like it when my house is full of flowers. I love the smell, I have some hyacinths at the moment and their heady scent as I walk into the living room is beautiful, I love the colour and the fragility and I especially love to look outside and see daffodils growing outside my door with their promise that another spring is on its way. I was a bit busy last spring so I intend to enjoy this one.

I thought this week I’d just fill you in generally about how things are going. First off great excitement here as my scales inform me that not only have I smashed my 7st target weight but I’m now 7st 6! *air punch* I’m still thin and I hate how wrinkly my arms and legs are but I’m getting there. It means my diet is improving and that I’m enjoying food … mainly, I still have days when I’m just not hungry or feel a bit nauseous but now I have a back up weight its not so serious if I just have even a couple of dry biscuits for instance. I know that it won’t last and I’ll be hungry the next day.

My meds appear to be at the right levels. What’s supposed to happen is that the slow release morphine I take lasts me for the twelve hours until the next dose but occasionally the pain just sneaks through. I can normally tell when its nearly pill time without looking at a clock anyway but when this happens it can wake me up and just send a little reminder that the alien is still there. At that point I have a word with the medical professionals and we crank it up by 10mg or so. A couple of days later when I’ve got used to the new dosage I’m back on the right road. Ah, bad analogy, I won’t be on any roads with the amount of morphine in my system these days!!

However, with these spring mornings that we’ve enjoyed recently I’ve been able to put my shoes on and walk a few yards. My goal is to the duck pond in town and round the other way back home – I should think its a 15 minute job. Not quite able to go that far yet but I’m getting there and just a little bit of fresh air feels so good.

A new symptom I’ve noticed recently is a swollen tummy which if googled in my situation can be a bit alarming but I’m pretty sure I’m just dealing with wind and air in which case I’m fighting back with Omeprazole and Peppermint Oil tablets. Its uncomfortable rather than painful so no biggy.

So, I’ll see you here next Sunday. I’ve finally got round to buying myself a Thermos so when I write my blog I don’t have to keep losing train of thought to go and make myself another brew.

Posted in anal cancer, Omeprazole, slow release morphine, terminal cancer, weight loss due to cancer | Leave a comment

Well it seemed like a good idea at the time …

Posted on March 11, 2015 by dolly61

A few long, long weeks ago I decided that I might as well give this fibre optic broadband a go. A quick search showed that my service provider offered it in my area so I contacted them to asked for an upgrade. Within a few days a new router arrived which I set up and waited to be astounded by the new speed of my internet downloading. I was certainly astounded. It was zero. Several weeks and frustrating, utterly unhelpful telephone conversations later, I flounced off from that particular “provider” and ran to the comforting arms of BT. Well, sort of. The date they offered me to set up my super dooper router (hey say that out loud, its fun!) left me with a 2 week wait still without internet and thus pictures of cute kittens, celebrity gossip, online shopping, ability to order prescriptions etc. Never mind I thought. It’ll be worth it. Gosh was I excited when the day came that according to the email an engineer would install everything – between 9am and 1pm. I waited. I called at 3pm and spoke to a young man. Unfortunately the line was incredibly bad, so apparently was his day if the tuts and sighs were anything to go by and my request for him to call back was ignored.

You should know by now I hate playing the cancer card. Nine times out of ten it has nothing to do with the situation I’m dealing with so all it achieves is making the person on the other end of the line feel bad or think that I’m pulling a fast one to get preferential treatment, neither of which make me feel good. However, I get tired quickly these days. Frustrating, upsetting conversations with incompetent people exhaust me – hey sometimes non-frustrating, perfectly lovely conversations with loved ones exhaust me too – but I had to get a pal to call them back the next day because I simply couldn’t cope with speaking to them anymore. She did. Blimey, she can be assertive! Thanks J!!

Long story short (delay was due to fact somebody hadn’t flicked a switch they should have, something by the way my former service provider should have been able to spot immediately rather than keep me on the phone for hours while I checked and rechecked the router which in retrospect was never going to work because I wasn’t connected.) Thanks to a very polite, friendly young man who turned up on time and appreciated a good cup of coffee I now have access to cute kitten photos and everything else that I need for my day to be a little more fun and informative. So I’m back. Usual Sunday thoughts and ramblings will continue.

PS: One of the last short Twitter conversations I had with a remarkable woman I am proud to have known was about the shortcomings of the particular service provider which is one of the reasons I’m not naming them. Pond scum is pond scum. Her memory deserves better. More about that on Sunday.

Posted in anal cancer, palliative care, terminal cancer | Leave a comment

Park Avenue Beat

Posted on February 1, 2015 by dolly61

Well it’s Sunday morning so I’m here again. My sleep patterns are a little crazy at the moment so I’ve actually been awake since just before 5am and have spent the time wisely. The Sunday papers have been downloaded and read from cover to cover. I’ve joined a new shopping site taking advantage of a 20% discount by simply clicking on a link in the article I was reading about said site. I’ve also downloaded a couple of samples of books after the reviews interested me. I’ve got a bit of a queue on my e-reader so I find it better to line up a short sample of a book and see if it grabs me. I’ve made a few mental notes to try some beauty products (lip OIL? Hmm. Better give it a try) and photographed a couple of recipes to try at some stage (Jamie’s sweet and sour chicken using noodles cooked in boiling water with a jasmine tea teabag … hmm, that could work.)

However, now I’m sipping coffee and staring at the open page on WordPress and I’m wondering if you’ll mind, dear Reader, if I make this week’s blog pretty much cancer free? Is that just being indulgent? It’s just I kind of feel ok at the moment. I take correct amount of meds at the right time, I’ve recently purchased a memory foam mattress topper on advice from the District Nurse to keep away any sores when my bony bum has problems being quite so bony, so I’d just like to write about something else. An interest.

So here’s the drill. It’s a bit like last week and colostomy bags except that I’d be surprised if anyone urgently googles “Perry Mason” while sobbing in a bathroom. Perry who?

Some of you are no doubt humming the theme tune. You will be of a certain age. Some of you will be frowning in slight recognition perhaps and the rest of you will be shrugging and reaching for the mouse to go and check out something else.

I can get a little OCD about TV series. I like nothing better than a Netflix marathon. Especially Netflix for the sheer laziness in knowing you don’t even have to keep pressing “play”. Netflix will just assume that of course you want to watch an entire series of Criminal Minds for instance in one, glorious “where the heck did that afternoon go?” greedy gulp, only very occasionally pausing to ask you “do you wish to continue” as it checks if you’re still awake/alive. It’s lovely. So imagine my joy one day when YouTube metaphorically coughed politely and suggested that as I had enjoyed some 60s programme in monochrome – oh it was an entire series of Alfred Hitchcock Presents – I may also enjoy these 200 episodes of Perry Mason starring Raymond Burr, Barbara Hale, William Hopper and of course William Talman as the ever thwarted, inclined to gibber with rage when Perry does one of his clever court room manoeuvres District Attorney, Hamilton Burger. Two. Hundred.

This was a few months ago and I’m sad to say I’m very nearly at the end of my Mason Marathon. I’m having to seek out further episodes that aren’t on the site sharing the 200 (although actually towards the end of that list there are some episodes that are either cut in half for some reason or worse … they haven’t got the ending!) I’ve just found another site that has a few episodes from season 7 which I believe were made in 1963 – 64 and has a few outside scenes and in “The Case of the Fifty Millionth Frenchman” has a young David McCallum doing an extremely dodgy Pepe Le Peau “Frooooonch” accent.

The biggest surprise for me came in an episode called “The Case of Constant Doyle” when Perry helps a client with a case from his hospital bed, the client in question being played by Bette Davis quietly out-acting everyone else off the screen.

So I recommend a bit of time spent in 1960s Los Angeles with Perry and his chums. Good stories beautifully acted, some vintage convertible cars to spot if that’s your thing or some wonderful 60’s fashion if you’re more into that.

Right, time for The Archers – DON’T get me started on David and Ruth’s move because when Kenton … (FADES TO SILENCE)

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A Bag for Life – A User’s Guide

Posted on January 25, 2015 by dolly61

This post is all about colostomies. You have been warned.

So – colostomies. I’ll categorise the post so that those who have done a search might find something of interest and assistance from a veteran of 7 months. Those of you who read my blog for more general reasons needn’t worry, there won’t be a test and I won’t be offended if you feel that it may contain a little too much information and you want to skim or just ignore.

It’s all about being organised. My bags can be emptied whenever and then re-sealed. They’ll tell you that a bag can stay on for up to three days but I like to change mine every day; in the morning after my bath works for me. I get everything laid out before I start. Adhesive remover spray, disposal bag, moist toilet wipes (personal preference), soft cloth for drying area around stoma. Nothing worse than being half way through changing when you realise your remover spray is the other end of the room.

Sometimes for various reasons you’ll be emptying the bag very frequently. It’s a bore but I find it makes things a little more bearable to treat myself to a hand wash in a particularly nice fragrance (Molton Brown does a lovely Pomegranate and Ginger) and a hard working hand cream or balm. I’ve recently discovered Rituals Miracle Balm which is luxuriously thick and smells gorgeous).

Now about why that bag emptying might be more frequent. Ah, the bowel is a mysterious thing indeed. One day things will work fine, the next, when you’ve eaten practically exactly the same, you’ll be bunged up or it’ll be the opposite. I’ve been told to have a laxative every day but sometimes this wouldn’t be a good idea at all. The trick is to keep vigilant. You’ll know what … well sorry but consistency works best for you. The days of aiming for a proper poo shaped poo have gone I’m afraid. That’ll hurt coming out. Sorry to be blunt but there you go.

As for food, there’s loads of really good advice out there but if I add to it I’d say try everything but keep a record. For instance, yesterday’s dinner involved broccoli which the booklets will tell you may be hard to digest. In my case it was, so from now on I’ll either blitz it in my NutriBullet in my new quest for a healthy life style or keep away from it. I find too much fruit doesn’t work for me. I had a smoothie the other day that was JUST fruit rather than a few veggies in there too. Gave me the runs and tummy cramps so I won’t be having that again. However I’ve found that a little ginger either fresh and chopped up or if I’m feeling lazy a squirt from a handy tube kept in the fridge, makes juices taste good and more importantly helps with any queasiness I might have.

I weigh myself daily on my rather clever Withings scales which also tell me my fat mass and BMI on a snazzy graph. I’m still under 7st but its steadily going up which is encouraging. I don’t like to see the wrinkles on my arms and tummy reminding me of the sudden weight loss last summer.

Ha! Oh dear I’ve just noticed I’ve been name dropping terribly. This post is like a 1980’s Jackie Collins novel (“she shrugged the RALPH LAUREN jacket from her shoulders and took another sip of her KRISTAL champagne …”) but I promise I’m not sponsored by any brand. Just if I think something is good and it works then I’ll tell you.

Until next time.

Posted in anal cancer, colostomy, terminal cancer | 2 Comments