Laine’s story

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Laine sitting in the Day Therapy Lounge with her piece of cake and cup of tea

Laine, has Idiopathic Pulmonary Fibrosis (IPF) and is currently being supported by our Living Well Service.

She is a photographer and creator and since she started attending sessions, she has developed a lovely bond with Faith our Life Celebration and Creative Activities Coordinator.

Faith has been supporting her with creating some items for her Grandson’s wedding. When she has been unable to do the activity herself as she would have done previously, she has been directing Faith in order to create her vision! The two have really enjoyed progressing this activity together.

Laine is passionate about sharing how positive the experience has been for her, so has been taking photos (or showing others how to when she has been too breathless!) and writing about her experience.

Here is her story, in her words… (scroll down for the latest chapter!) 

Front cover for Laine's story with logos of ARHC and Papworth Hospital Pulmonary Fibrosis Support Group and Laine with her camera in side and front profile

My journey, walk beside me. Living well with Arthur Rank Hospice Charity

Headshot of Laine wearing sunglassesThe diagnosis
Nearly three years ago I got chest infection and a cough that I’d had for about a year. The consultant at Addenbrookes diagnosed Emphysema and I had to return the next week for more tests. I knew how serious Emphysema was, but I had no idea how it would affect my life. I had noticed the difficulties I had breathing going up an incline for several years.

October 2019, I visited Addenbrookes for the second time, having had some further different tests and waited to see the consultant:

“You have IPF Idiopathic Pulmonary Fibrosis.”

A life changing disease. I would be treated with Oxygen Therapy and anti-fibrotic tables Prefenadone.

Stunned I left the hospital. I didn’t need oxygen did I? I was still working, so I presumed it was over the top.  How wrong I was.

I was working with my daughter but felt so ill I had to go to bed and tell her I would have to be off sick. I never went back! I was heartbroken.

Thank God for the internet! I researched and discovered IPF had a strong group near me. I contacted them. Steve from the group came and met me in our local coffee shop. How interesting and how kind he was:

“Why don’t you come to our coffee morning at Arthur Rank Hospice and meet some other members of IPF?”

Laine's photo of the Arthur Rank Hospice sign outside the buildingHusband, Geoff, and I arrived at the lovely new building, both of us not knowing what to expect of a hospice. After we signed in we walked through to the Bistro. What a lovely surprise, both the place and their staff!

The gardens looked lovely peeping at us through the bi-fold doors. So much to take in.

Then the IPF group, they were amazing. We shared stories. Geoff and I learned so much.

Dave told me of the Day Therapy (now renamed as the Living Well Service) he attended (pre-Covid). Even in rough outline it sounded amazing, but what impressed me most was that our Carers were looked after as well as the patients.

Laine and Geoff laughing together in the gardens at the HospiceSince diagnosis I’d decided there would be no secrets, no subjects that were taboo, but what I wanted most of all was for my loved ones to be as supported as me. The Hospice and IPF seemed to perfect answer for me. I left knowing I had had a very special day. Amazing people had touched my life.

As a person whose condition is life changing and chronic it is hard to walk in my shoes, but you can walk beside me… and I had met people this day, as well as fellow sufferers and loved ones, that would do just that. How I wished I’d taken my camera!

Prelude to ‘Eight Weeks’

Our roles had completely reversed overnight, but in my heart I was still caring for my family and husband. I had researched IPF, now I was researching the Hospice. Further down the road I would research and organise carers all to give support to my loved ones. We were facing difficult times.

I asked at the desk and our details were taken, shortly after the invitation arrived by post. The interviewer, took our details, asked questions and gave us leaflets and explanations in order to see if we would benefit and to decide which sessions would be best (there are four types of Living Well sessions I believe). Which would be best for us? We were offered Tuesday afternoon 1.30pm till 4.00pm. I say ‘we’ because Geoff could also benefit from counselling, complementary therapies and Arthur’s Shed with a group of guys doing woodcraft and enjoying the facility. They have since moved. Geoff could also be ‘off duty’, sit in the Bistro and read his gardening books.

Geoff and I decided we would make a day of it when we were told I could attend the Tuesday session, 1.30pm-4.00pm.  Geoff chose the quietest country road to drive to the Hospice, the longest route as it happened but we were in no rush. A good choice. We arrived early in time for lunch.

When we had made our first journey we had parked in the Babraham Road Park & Ride next door and found the footpath to the Hospice. I was still completely mobile then, and just needed my condenser on low, so we walked around to the building. Now, we were coming to the Living Well Service we parked in the Hospice car park. We signed in, name, time and car registration.

We looked at the menu in the Bistro and chose our lunch. Very enjoyable.

A staff member came and collected me and gave me a tour showing the gym, the kitchen and the social activity room/lounge. Slowly the lounge started filling up, all of us sitting at little tables. We were offered tea coffee and cake by the volunteers (pre-COVID).

The other people enjoying the Living Well Service, and obviously friends, welcomed me. There could of been 8 or 9 I didn’t count but here was a happy buzz. Then we were asked what we would like on our schedule for that afternoon. Everything had a time slot: gym sessions, complementary therapies, art projects, relaxation, music therapy, discreet chats with the nurses and more.

We chose, and often 3 or 4 of us shared one of the sessions, for example the gym. The humour and camaraderie made it very enjoyable. Or you could be taken off for a massage, finishing with relaxation or an art project. But if you wanted to sit quietly having a hand massage drinking tea you could do that as well. I enjoy people and hearing their stories. I felt quite humble and honoured when they shared their journey, with me.

Time went very quickly , Christmas came and went along with a Christmas party and ‘Father Christmas’! We took advantage of the therapies and all the different things that we could do , it was a great support to both of us .

Then IPF made me aware that a virus as bad as the norovirus was beginning to take hold. We were advised to isolate. A week later Boris put us into lockdown.

My world stood still as it did for most of us. No family, no IPF, no Hospice. No holiday that I knew because of my worsening condition would be the last holiday abroad.

It took a while before the feeling stunned wore off. We all felt the same.

IPF kicked off with emails back and forth so we could feel in touch with friends . The Hospice contacted me presenting a new concept ZOOM!!!

Those of us with limited computer experience had some fun muddling through and those who were computer literate talked us through. Zoom became the way we saw and contacted each other: new subjects, new ideas grew and were presented. I met some new people and reconnected with old friends. I learned how to paint using computer skills, I visited museums, I discussed art. As interesting as it was, like everyone, I missed the face-to-face contact.

Both the Hospice and IPF worked very hard to hone their skills, keeping us under their wings. The Hospice rang every week and a ‘Caring Communities’ volunteer rang to keep in touch.

We were in the extremely vulnerable group of people. In between the first and second lockdown I was invited once – amid stringent precautions – back to the Hospice. I couldn’t stop the tears – I’d missed everyone so much.

It was obvious the staff missed us guys too. They all worked so hard behind the scenes.

Second lockdown has come and gone and the Hospice have an amended routine that works very well. I was delighted to be invited back.

I have enjoyed a new 8 week course that is still inclusive of all they offered before COVID. I offered to do a photographic story board to present a selection of their services and their caring and skills so

My journey ‘Eight Weeks’ begins…………

Here are some of the IPF Group, including patients [left to right, seated] Ron (also the group’s Chairman) and Dave, who told me about the Hospice.  Susan whose idea it was to explain what the Hospice did, is at the front and I am on the far right and thought pictures would be nice. Back row are our Carers [left to right] Sylvia, Bron and Geoff.

Eight weeks, 24 June 2021

Not a scary place (Arthur Rank Hospice Charity). More like a first-class hotel. Learning how to live before you have to die.

What a welcome, lovely smiley faces to greet you at Reception. Even behind that mask you can see Gillian’s eyes that crinkle. Hot chocolate in the Bistro while waiting to be collected by a staff member for your 10.30 to 11 o’clock session.

Living Well service. “First and foremost”, says the nurse “Let me sort out your oxygen“, as I’m plugged into the Hospice’s oxygen canisters.

“If it runs out let me know”. I talk too much! This kindness enables me to enjoy these sessions, no worries that I will run out.

Different therapies. I talk too much but it’s so beneficial to me. I enjoy people they interest me. I appreciate professionals that HEAR what I say and enjoy their input. Patients that walk in my shoes – you know what I mean – and they do!

Such kind people that become friends and second family. Yet if I want or need to be quiet that is recognised and respected too. Medical needs or disabilities are attended to by our lovely nurses with discretion and empathy.

There is a nice gym that caters for our physical fitness. I fight the good fight daily, with my oxygen needs increasing, but I’m encouraged to do what I can do.

“Will I do a zoom meeting to help the physios training?“.

Of course, I’m only too pleased to give a picture of how this condition (IPF) affects me and anything that helps train the professional to create strategies that will specifically help his breathing condition. I talk too much this time it has an advantage!

I love all the complementary therapies. Reflexology, shoulder and head massage. I can relax or talk, my choice; of course… I talk too much! She is so interesting. This is therapy too.

Hand massages from the volunteers, oh how important is touch. As we get older touch gets less and I miss it. We British are so stoic.

Oh, what a lovely cup of coffee (or tea) and the volunteers who make it. Nothing is too much trouble:

“You want drinking chocolate? We haven’t got any in the cupboard but I’ll get you some.”

“What photo do you want for your story I’ll take it for you?“ (Physically it’s getting harder for me to take different angles).

“You want to go beach bag? I can lend you one to put your oxygen in for your family wedding.”

I’ve never been so spoilt in my life!

Artistic needs are addressed and encouraged. Faith [Life Celebration and Creative Activities Coordinator]…. life stories with photos. Her volunteers help to type up. Making things, puppets etc.

“Do you want to do some glass engraving Laine, for a gift for your grandson’s wedding and a card? I’ll help you”.

I don’t concentrate as well as I used to so the offer of help was so welcome. She showed me what was involved on a bottle. The couple don’t drink but a vase would be nice. In the blink of an eye a lovely square vase was offered to me. My imagination and enthusiasm fired! How well she listened to me…

“Yes please! Thank you.”

Nothing is simple with my condition the fumes and oxygen would be dangerous. What a star, already thought through!

“I’ll be one side of the glass window while are on the other“.

Keith, pastoral care [Chaplain from the Patient and Family Support Team]. Thought-provoking discussion subject matters, music therapy. Blethering and Reflections, all of which cater for that brain cell that remains. Often though, it is enabling you to ask questions and get answers that you didn’t know, or you needed to know.

Then the joy and pleasure of being reminded of special songs that you love and have deep meaning for you. Hearing other people’s stories, what a lovely distraction. Being inspired by all the different stories.

Eight Weeks – 8 July 2021

Card making. I was settled in a chair next to Faith so we could start designing the card for my grandsons wedding card. Everything had been prepared and we started making choices. Faith helps me because my need for oxygen takes away my energy; at one time I could have done it myself. It was fun getting back into a past hobby before my camera that then became the love of my life.

Running parallel was my story board. Sharon [Therapy Assistant] my cameraman and Dawn, the Hospice’s Communications Officer and photographer, so we can give an insight to the eight-week course and the work the Living Well Service does at the Hospice.

The four of us all interacting as Faith and I began designing the card: base cover white, pale blue for the ‘wobbly bits’ (none of us could remember what it was called, so we ended up giving it our own name and howling with laughter! ‘The wobbly Bits’ of course, now I remember, are the ‘embossed’ bits. Jeanette [Nurse] joined us and did wonders at the wheel. Then a dark blue layer to put on the writing on.

Does Geoff want to do a cast of your hands together Faith asks me? What a nice idea and she goes off to find him.

“Hello”, Cat [Occupational Therapist] appeared with beautiful flowers: “These are for you as a thank you for doing our survey yesterday”.

I am truly touched: I’m only too happy to help as a small thank you to you guys for all you do.Faith and I talked about protocol. Everyone has to sign a form to have their photo taken. The staff are such sports, making their acceptance obvious whenever the camera is pointing in their direction.

Jeanette sat peacefully reading a relaxation sheet to a patient while I drank a cup of coffee that magically appeared… after talking too much.

Eight Weeks – 15 July 2021

Help my old batteries for my camera have run out, even the spare! Thank goodness for my fellow cameramen, they have saved the day! It’s nice that Jan [Volunteer], Faith [Life Celebration and Creative Activities Coordinator] and Sharon [Therapy Assistant] have become my ‘snaps’ for the day, and they have their photos included.Making friends seems to come so naturally to a group of people who have a variety of life-changing conditions. The Hospice welcome all of us, no exceptions whatever our condition, as long as we would benefit from their care. They bring out of us what we can do, not worrying about what we can’t, but molding their care around our needs.

I have met some inspirational people that will always have a place in my heart. Some feel like family and some I will miss forever.

It’s up to you: if you want to sit enjoying the peace and quiet and be spoilt then you are welcome to do so. You decide what you take from the service and what you give back.

Michelle [Physiotherapist] gave us a talk of how to help the condition of breathlessness leading onto Helen [Music Therapist] holding a class for singing for health. First, we did some warm-ups like the professional singers do! Such fun to see all the facial contortions. I’m in training for a new career I thought! No such luck, I really sounded like a stripped moggie with hiccups and a bad cold!!!

“You all tell me you can’t sing”, said Helen, “so a few more voice exercises, we will do ‘dee dee dee’.”

Spontaneously, someone broke out “Daisy Daisy give me your answer do!”; seizing the moment Helen grabbed her guitar and accompanied her new choir. Then she produced word sheets to favourite songs, ‘You Lift me up’ being one. Some songs provoked raw emotions; music does that to you. Oh, the pleasure! Even the gardener stopped what he was doing and enjoyed the entertainment. Thank you Helen a very enjoyable session.

Faith and I sat with an iPad to design our etching on vases, straight to the machine computer, Faith doing all the clever stuff! She pulled up on screen the appropriate pictures and applicable wording including style of text: a lot to choose from.

I was pleased with the choices I made and happy to show an interested Emma (“I heard of what you are doing”). Second stage was to measure the vases and choose where everything would go and the wording. All we can do for today. Next stage, as I understand, is to make a vinyl template and cut it out. Time consuming but Faith will do it for me.The Hospice ask interesting individuals to talk about their hobbies or come to entertain us. Jeanette [Health Care Assistant] has spoken often to my husband Geoff, so knew of his hobby growing Bonsai trees. He wanted to show her a favourite one and put it in the car that morning. He was pleased to be asked to come and show his tree to everyone: an interested group asked lots of questions. Then Jeanette led a relaxation session to close-down our morning and Geoff enjoyed joining in with that.

Eight Weeks, 22nd July 2021

Loaded down with camera, liquid oxygen cylinder, a carrier bag with display book, plus vases, we arrived early so settled in the Bistro for a cup of drinking chocolate.

No longer mobile Jeanette came to collect me in the wheelchair:

“I’ll bring the chocolate.”

A juggling act especially when we hit the doors to the unit, but as ever there was always someone willing to help. This morning it was Sue Rossitter [Joint Lead, Living Well Service]. How nice to meet you, a new face for me. We stopped for a conversation.

Sue, respected and caring boss.” Can I take your photo?”, I asked.

“Of course” she smiled.

Also pictured here, we have Gillian, [Receptionist] and her smiling greeting, who also agreed. Then Brooke full of fun, who works in the office but is the well-known voice on the end of a telephone keeping you informed, in addition to chasing you up, very nicely. And Kate [Complementary Therapy Co-ordinator] a therapist I had met my first week, who I caught up with again. Her gentle touch giving a lot of pleasure.

Having caught up, it was now time for my session with Faith. I told her last week how my daughter would really love and appreciate a vase designed by me.

“Lets make her one then!”

Faith bought from home the two templates. First – what looked like a negative with decorative cuts in it – was secured to a board and Faith sat with torch and picker tool, good eyesight needed!

After carefully placing the delicate template on the vase we were ready for the next stage. A stage I couldn’t join, but only view from behind glass doors, which Faith had risk assessed to be safe. She sat outside and I sat inside, watching her paint on the toxic liquid. It was left for the appropriate time then washed off.

 

Success! It looks beautiful I’m so pleased with it.

Taking the same care with her patients’ needs and abilities was Sharon [Therapy Assistant] in the gym. Big enough to accommodate 3 patients (distancing rules) at a time. Equipment, cycles, steps for circuits, bands, chairs for personal assessed exercises led by Sharon.

Ending the day with a familiar face: Keith [Chaplain/Team Leader – Patient and Family Support Team] (also pictured above) pastoral care. A gentle and relaxed voice taking a ‘Reflections’ session by reading appropriate lines from a book encouraging patients to express their thoughts and experiences. Patient-led is most important to Keith.

Another busy day.

Eight weeks – 29 July 2021

Plaster casts. On arrival Faith took Geoff and me straight down to the unit. She showed us the best way to hold hands placing fingers and thumbs artistically. Recalling at the same time a humorous tale of what we should NOT do!

We practiced for a bit while she mixed the quick setting plaster and poured it into a bucket. We plunged our hands in until we hit the bottom and several minutes later pulled back a bit to release the suction.

A selection of photos as Laine and husband Geoff go about making a hand cast

Mould made, Geoff and I left to attend various sessions.I

was lucky to have Myriam, a non-medical member of staff, a complementary therapist. She gave me a reflexology treatment – it was bliss. We managed to put the world to rights as you do, and I took her photo this time.

Returning to the lounge activity room sadly our cast of hands had air bubbles resulting in our hands looking as if we had a bad case of warts! All good practice, we will repeat it next week, no problem.

Unexpected time became available which prompted a photographic portrait session. Lots of giggling. Procrastination at its best:

“I’ve got double chins”
“I don’t take good photos”
“I pull faces”
“I’ve got poor teeth”
“My hair needs doing”

I’ve heard it all. Changing the background or the angle you sit can make all the difference and as a woman photographer I understand wanting to look good.

I too have said these things, but you should see yourselves from my side of the camera I don’t see the chins the teeth the pulled faces etc: I see the kindness in the smiling eyes, I see the charming naughtiness, the good fun and the understanding, and sometimes I get it right:

“That’s the best photo of me!”

Oh, how I wish I had a double chin I’m so thin, but I am who I am warts and all. Nothing so true as beauty is in the eye of the beholder.

Selection of photos including Complementary Therapy with Mynam and portraits of the Living Well Service Team

Something I do want to discuss with the team and my family: ‘The ‘Elephant in the Room’ Cartoon elephant

The ward and Inpatient Unit. Not knowing what to expect is the problem.
Next week I will be given a tour. I want to know what happens next but if you don’t that’s alright too.

Things are getting more difficult for me and my family, I fall asleep at the drop of a hat.

“YOU ASLEEP?” booms a loved one and I lurch back into consciousness. I hope I don’t fall asleep at the wedding!

I can just about walk a few yards, I can still brush my hair, I can still get lost in my photography… lots more ‘cans’ than ‘cant’s’ but I have to know my limitations. I’m grateful the brain cell allows me time to get lost in what I love doing or thinking and feel ‘normal’ for short periods of time:

“You go for it mum,” reassured my son, “write about the ward”.

We stopped by the Bistro to have lunch before returning home, quiche is my favourite. We saw families with babies and young children happily chattering and visiting loved ones.

We met Helen the music therapist, she laughed when she read to piece I had remembered and written about her time conducting ‘Daisy Daisy’. She said she would like to use it for a quote in her patients’ feedback. I took her photo too!!!

Eight weeks – 5 August

Hands and Plans. The last day of the eight-week course. How I will miss everybody. I’ll even miss getting out of bed early to arrive on time! The isolating has made me very lazy.

The ‘Inpatient Ward’ was stunning. Like the Living Well service’s day care, the aim was to make the rest of my life the best it can be.

With Faith, Geoff and I made our way to the Inpatient Unit. It is a lot bigger than you realise from the outside. I had no preconceived ideas of the unit from their web site.

From a few basic questions I learned that placements were made by medical recommendations, or if in the Living Well program, by Gemma or Katie who can refer you to help manage your symptoms of pain, breathlessness, sickness, emotional support etc, with no specific time limitation if a helping hand is needed.

There are 23 beds: two four bed wards, then single rooms and two family units all with balconies or outside space.

With the best will in the world, even with recommendation, if they are full, they will not be able to take you in.

Collage of images showing colleagues from the Inpatient Unit: 'after some good humoured banter they rose to the occasion and rewarded me with their smiles'.
Looking around at the reception desk it was bright and cheerful, fairy lights and flowers. The main lighting had a soft glow adding to the initial peaceful ambience of the reception area, creating a tranquil feeling.

The staff disappeared quicker than chocolate when I arrived with my less than discreet camera(!) but after some good-humoured banter they rose to the occasion and rewarded me with their smiles and promises:

“You can catch me when I feed the birds!”

A walk through an open communal area led to the quiet games room.

First thing I saw through the door was a beautiful tropical fish tank full of Neon Tetras. It reminded me of my childhood home where my parents kept tropical fish, very calming. Provided in the room were board games, TV, books, and a patio with a bird feeder.

Faith sat and explained several things about the Unit. She then asked what my ‘plan’ was… I don’t have a plan, when the time comes I will ‘problem solve’ when I know what the problem is, but I’m just as happy to know what my options are.

We wondered out to the private outside garden space. Arthurs Shed could be seen the distance I had no idea this room was here or any of the others!

I then realised each room had private discreet open space a clever build design for the comfort and pleasure of the patients. I’m impressed.

Collage of images Laine took of the Inpatient Unit, with titles 'Walk to the community area', 'quiet room' and 'Arthur's Shed'We continued the tour though spacious family areas with kitchen facilities, past the wards and private rooms and Geoff and I were shown into a private room.

Ooo that bed looks comfy. I LOVE the garden space. The full-length window doors are bifold so even a bed can be wheeled out there.

Faith demonstrated the spacious wet room with all its mod-cons. She showed us the built-in wardrobes and medical storage cupboards and pointed out the large TV and plump bed chair so that if your loved one wanted to stay with you, they could. If your loved one was a dog or cat… then that’s fine too. Not so sure about a Bearded Dragon! I’m sure you could come to some arrangement.

Collage of photos of the Inpatient Unit rooms, titled 'Comfy beds and armchairs'
Want to get married? Keith conducts civil ceremonies. Special celebrations can be arranged too. What a lovely thought to leave the Ward with: life the best it can be.

We practiced last week making a cast of our hands. This week it was a great success it is beautiful. We are thrilled, such an inspired idea. We kept still this week while Faith got down on the floor to support the bucket. Getting down was fine, getting up was the problem and you can only produce a good cast if you don’t wear shoes.

Collage of Laine's photos from the hand cast process

Thank you all for making this course a great success for me. Sending you all good wishes for the future.

Laine x

PS. Today’s out-takes:

Collage of 'out takes' with words 'and there were many fun moments. Thank you everyone for everything. I've loved my course. All of you have made it such a success'.

Hand cast of Laine and Geoff's hands with words 'Hold my hand and I'll continue my journey. The best it can be.'