John Mountain started to attend Blythe House’s monthly prostate cancer support group in 2018, after he was diagnosed with the condition. Alongside other health issues, the Chapel-en-le-Frith resident has sought support from the hospice’s community volunteers during the COVID-19 pandemic. Here, John explains more:

‘My Partner and I knew about Blythe House from its early planning stages back in the 1980s, but I started to get support and information approximately three years ago after I had been diagnosed with low grade, early stage prostate cancer, and began attending the support group meetings.

‘After discussions with other group members I decided on a treatment called brachytherapy (a form of radiation therapy), where small radioactive pellets approximately the size of grains of rice are implanted directly into the prostate, under a general anaesthetic. The surgery was successful and I was allowed home after an overnight stay. It was really helpful to discuss matters with people who had wide-ranging knowledge of the condition and had undergone the same treatment, which I would recommend to anyone who was suitable.

‘Prior to the prostate cancer diagnosis, I had also been diagnosed with Parkinson’s disease approximately six to seven years ago, which is being controlled reasonably well with medication.

‘I was also suffering mobility issues with spinal disc problems. I was seen at Salford Royal Hospital, and put on the list for some injections but with the onset of the pandemic in March 2020, everything was put on hold. The spinal issues got worse, affecting my mobility and I decided to pay for surgery, which was carried out in September and my mobility is slowly improving.

‘I sought support from Blythe House’s community volunteers during my recovery phase. All volunteers I have spoken to have been great; very helpful and friendly, and I know I can always rely on the service. Things would have been very different without their help in getting prescriptions collected from the pharmacy and delivered to my home.

‘For anyone who has difficulties and needs some help, I would recommend they get in touch with Blythe House where they will find all the help and advice they need.’

Find out more about how Blythe House could support you or your family.

‘If you’re going to make a will, why not do it when the solicitor is willing to donate the fees to such a worthy cause such as Blythe House Hospicecare?’

Ali and Scott Beswick decided to make their will with Cooper Sons Hartley & Williams during Blythe House’s Wills Month in 2019.

The Buxton couple have supported the hospice with various events and fundraisers after Ali’s mum, Julie received care at Blythe House following her breast cancer diagnosis in 2018.

Here, Ali and Scott explain more about the support Julie received, the importance of writing a will, and why they chose to do so during Wills Month…

‘We knew of Blythe House before mum’s diagnosis, and were aware of some of the services the hospice offers, like counselling and respite activities at the hospice and end-of-life care at home, but we didn’t know much more than that. We didn’t realise how varied the support and activities would be or how much was available, or the extent of the support groups.

‘Julie started to access the services at Blythe House in 2018 following her breast cancer diagnosis. She received various types of support including one-to-one and group sessions, and was able to access care and advice including speaking with a financial advisor about benefit entitlements; receiving weekly physiotherapy for her feet as they suffered from the effects of chemotherapy; complementary therapy including reiki; counselling; and talking to a beautician about hair care, head scarves and wigs.

‘Julie also took advantage of the craft facilities at the hospice and had a go at some painting, book folding and tapestry as well as joining in on the Writing for Life course which enabled her to put down on paper thoughts and feelings and discuss these in the group. The sessions also enabled Julie to meet other people who have become very good friends; there is nowhere like Blythe House where you can meet and catch up with others in a similar situation. Julie also attended (pre-COVID) the monthly breast friends support group at the hospice- offering a chance to be with other people who have had breast cancer.’

A positive prognosis

‘Julie is doing very well now and has been back at work for just over a year. Her treatment is now down to once every six months and if it were not for the current restrictions due to the COVID-19 pandemic, she would be doing pretty much everything that she was able to do before her diagnosis and treatment began. Her hair has come back too!’

Giving something back to Blythe House

Scott said: ‘Blythe House is a local charity that relies heavily on donations and fundraising to continue providing vital services to patients like my mother-in-law and families like ours. The charity is particularly close to us due to the support that they have provided to Julie and therefore, there was no hesitation to choose to run the London Marathon for the hospice (now sadly postponed until next year!) We have also taken part in the Glow Twilight Walk with our family, which was an amazing occasion.

‘When Wills Month came around, there was no hesitation; we needed to make a will and we wanted to continue our support to Blythe House and give something back ourselves.’

Making a will

Ali explained: ‘We became homeowners in 2016, got married in 2017 and had our little boy, Callum in November 2018. We had talked about making a will a number of times over the last few years but it was one of those things that we never got round to doing. I think we expected it to be a really long-winded process which we kept putting off, but when my mum received her diagnosis and when Callum was born (both in 2018), it really hit home that it was something we needed to have in place, for Callum’s future more than anything.

‘My mum picked us up a leaflet about Wills Month 2019 during one of her sessions at Blythe House, it was another reminder to make a will, and when we saw that the fees were being donated to Blythe House, we felt that if we were going to make a will, it needed to be then; so we did!’

Securing your future – making a will is so important

The couple said: ‘As uncomfortable as it is to talk about, death happens to us all and we will never know when “that day” will happen, so the sooner you make a will, the better. Having a will means that there are legal plans in place to determine what will happen to your assets (home, car, savings, everything else you own) and your family (children, pets etc.) when you are no longer here. We felt a strange sense of security and satisfaction when we made ours; as if we were securing Callum’s future.
‘The meetings with the solicitors and putting the wills together don’t actually take long, you just need to be in agreement of who you would like to act on your will (your executors), what you want to happen to particular items (or other assets) and who will receive them (the beneficiaries). Gather a list of the names and addresses of the beneficiaries and the solicitor will do the rest! Once you’re happy with the draft, you go in to the solicitor’s office for literally five minutes to sign the final document and it’s done!’

Kill two birds with one stone –write a will during Wills Month

‘Excuse the pun – kill two birds with one stone! If you’re going to make a will, why not do it when the solicitor is willing to donate the fees to such a worthy cause such as Blythe House Hospicecare? You never know; you or a family member may need to call upon Blythe House at some point; wouldn’t it be a good feeling to know that you have helped support the hospice to support you or someone you love?’

To book an appointment to make your will in October, call Cooper Sons Hartley & Williams on 01298 77511 quoting Blythe House Hospicecare.

 

‘I really value the support from the community volunteer programme; Blythe House is a lifeline for me and my family.’

Janet with Ali

Chapel-en-le-Frith resident Janet Brindley was referred to Blythe House by her support worker in October 2018, after she was diagnosed with motor neurone disease earlier that year.

Janet, who was a very keen walker, said that looking back and thinking about it, she knew things weren’t quite right with her legs when she would climb over stiles and jump down, she was ‘not as bouncy’ as she used to be. The former GP surgery receptionist also noticed changes when she was driving, as she struggled to react and put her foot on the brake as quickly.

‘I never expected to be diagnosed with motor neurone disease,’ Janet explained. ‘I was having a lot of scans and X-Rays in 2017 as I was experiencing a lot of back pain. It wasn’t the usual pain that you get from doing the gardening; it was more severe and my doctor originally thought that I might have a trapped nerve. I was referred to a neurologist and underwent more tests; before being diagnosed around Easter-time 2018, the day before my birthday, which was the worst present!

‘I was then quickly referred to Salford Royal NHS Foundation Trust where I had different meetings with a consultant, social workers, physiotherapists, speech therapists – all different people telling me about my prognosis and supporting me.

‘When I was diagnosed, I was still walking around unaided. Then over the last 18 months, I have progressively gone from using a walking stick, then a four-wheeled walker, then I fell in May 2019 and fractured my ankle, and since then I have been using a wheelchair. At first, I was still maintaining my independence, but now, I am deteriorating and rely very much on other people; I cannot get on and off chairs or my wheelchair on my own, and need a lot of assistance. I have also noticed recently that my arms are not as strong as they used to be. I have the amazing support of my husband, David, who still works full-time alongside caring for me, and help from close friends who keep me company.

‘I knew about Blythe House before my referral as I attended a few sessions around 10 years ago when I was diagnosed with breast cancer. Back then, I met with Ann Cawthorn [who is now a Blythe House trustee], who provided advice and support, and enjoyed complementary therapies, but I didn’t go to the groups as I was too poorly from my chemotherapy.

‘When my support worker suggested Blythe House in 2018, I was happy to go along to the Living Well service. I didn’t attend the service beforehand, but having been now, I know it’s absolutely not what I expected and I really enjoy going every Wednesday, and depend greatly on the support from the staff and other service users.

‘I think the physiotherapy service at Blythe House is marvellous. I am now very limited with choosing footwear that fits my feet as they have become very stiff and often swollen. I also wear a splint on my right ankle as this has become very weak since the fracture last May. You just do not even realise the types of things you’ll need to consider after being diagnosed with motor neurone disease. Tina [Blythe House physiotherapist] helps to manipulate my feet and legs; I didn’t see her for a few weeks and they felt so stiff, but after seeing Tina she really helps to ease the pressure and I feel so much more comfortable.

‘Through attending Living Well and chatting to my key worker about other support available, she suggested the community volunteer programme, where a Blythe House volunteer would be able to come to my home and help out with tasks and activities. I met Ali one day in the summer when I was at the hospice; we had a chat and Ali said she’d be able to support me however I wanted.’

Ali Dronfield-Boyd became a community volunteer in June 2018 after taking early retirement. She explained: ‘At that point, it was summer, so the first few times I went around to Janet’s house, I was able to help with activities like mowing the lawn, tidying the garden, planting flowers and pruning the roses. It was lovely as Janet was able to sit out in the garden with me, and we could natter away as I was getting on. I always say to Janet that I don’t do things for her, I do things with her.

‘Another task we carried out together was to help make the kitchen more accessible to Janet in her wheelchair, so we moved the tea cups and mugs from the top shelf of a high cupboard, to a low-down drawer which Janet is able to quickly and easily pull open. I also moved a table from outside to in the kitchen; it sits at just the right height for Janet’s wheelchair meaning that she is able to do some artwork including hand painted coasters. I also do the ironing, as this is something that Janet can no longer carry out.

‘The best thing about all the support is the companionship that Janet and I have struck up. We are in a similar age group, we have similar aged children, and have been on holidays to the same places; we remember a lot of things and like to reminisce.’

Janet added: ‘It is so nice to have someone you know coming over to provide regular support. Even if there’s not a lot to do, it’s just nice to chat; like having a good neighbour over. I really value the support from the community volunteer programme; Blythe House is a lifeline for me and my family.’

*Feature image shows some of Janet’s hand painted coasters

More information about the community volunteer programme.

 

Engineer, Jim Martin started to attend Blythe House in 2018 after cancer in his prostate spread to his bones. The 68-year-old proud grandfather says the hospice is ‘certainly not a “last chance saloon”’ and that he would ‘recommend it to anyone.’

Jim, who’s from New Mills, explains: ‘I was diagnosed with prostate cancer in 2003 and underwent an operation to have my prostate removed. I was doing alright for about 10 years, then my PSA test started to show signs of my level going up.’

The PSA test is a blood test that measures the amount of prostate specific antigen (PSA) in your blood. PSA is a protein produced by normal cells in the prostate and also by prostate cancer cells. It’s normal to have a small amount of PSA in your blood, and the amount rises slightly as you get older and your prostate gets bigger. A raised PSA level may suggest you have a problem with your prostate, but not necessarily cancer[1]. [Read more about the PSA test via the Prostate Cancer UK website.]

‘I had scans and it looked like traces of the cancer had returned, so I underwent radiotherapy for five days per week for a month at The Christie hospital, which seemed to do the job. Five years later, the cancer returned, but this time it had unfortunately spread to my bones.

‘My brother-in-law came to Blythe House and encouraged me to find out more. I said to him “that’s a hospice, I don’t fancy that!” The first thing I thought was that they were going to keep me in. But a few weeks later, I decided to give it a go and I came to have a long chat with Emma [Richards – Community Engagement Facilitator], who referred me to the Living Well service. My wife Alison could not believe that I had decided to come along.

‘The first time I attended the service, I felt a bit uncomfortable, and during the sessions I would keep quiet and just listen to other people talking. There were many other patients – mainly women, but a lot of volunteers too, including a chap called Martin who I got on really well with, and we’d chat about football including Man City who we both support.

‘I also got the opportunity to enjoy other services including physiotherapy and acupuncture, as well as seeing Dr Sarah Parnacott in her out-patient clinic. The first time she met me, Dr Parnacott said I looked very uncomfortable and almost like I was in pain. She changed my medication and it made me feel so much better; I got on very well with her and felt very comfortable chatting to her about my concerns.

‘I enjoyed the company at Blythe House; everything about the place made me feel better when I came in. It wasn’t a chore and I enjoyed coming. The place is very special; it’s professional but very friendly. When you walk in, people know your name. I still bring my brother-in-law to a clinic here, and when I’m waiting in reception, people say “hi Jim!”

‘I would recommend Blythe House to anyone; if anyone gets into the state that I was in. It is certainly not a “last chance saloon” – when you think of the word hospice, you think it might not be a nice place to be, or that you haven’t got long left. That is absolutely not the case! If anything went wrong with me again, and I found myself needing advice or support, Blythe House would be my first port of call.’

[1] https://prostatecanceruk.org/prostate-information/prostate-tests/psa-test

 

Philippa Heath, from Chapel-en-le-Frith, became a Hospice at Home healthcare assistant in March 2017 after deciding to apply because of her passion for ‘people to have the choice and the option to die at home.’

Here, she explains more…

‘My husband sadly died two years earlier; it was his preference to be at home until the end and this was made possible with the dedication of the district nurses, and of course family and friends. Hospice at Home was not available then but I could see the huge benefits to patients and families that it would bring.

‘I enjoy every aspect of my job and see it as a privilege to be able to be part of a patient’s journey towards the end of life. As well as personal care, we are there to help with general day-to-day tasks and sometimes to just be a listening ear. We often sit with patients to allow their carers, usually a spouse or other family members, to get some respite. Each person has his or her own personal needs so it is a varied and challenging role.

‘It is paramount for everyone to benefit from good end of life care. Every single person matters and whilst we are caring for them, they are still living their best life possible. We can ensure that personal needs are met to avoid unnecessary discomfort and that dignity is maintained throughout. We can be the eyes for the district nurses and doctors, and so report any issues as soon as anything becomes known. We offer support in whatever way is needed. Many families feel lost or overwhelmed, and to be able to offer the kind of help and support that Hospice at Home does is just incredible, usually when families are exhausted, scared and in emotional turmoil.

‘I’ve been with patients on just two occasions at the actual time of death and arrived at one house very soon after. On a practical basis, I have called for a doctor to certify death, contacted the funeral directors, and helped to wash and dress the deceased. On the more emotional side, just giving the family space, understanding, staying calm and of course making tea. Sometimes just being there is worth its weight in gold. I truly believe that we make a huge difference to every single person we sit with. Being with a lady while she died just before midnight one evening really sticks in my mind. I held her hand, talked to her and was able to let the family know that she was not alone in her final moments and that it was a peaceful. This is something each family can take great comfort from.

‘I hope that Hospice at Home can continue to grow. We are so lucky to have this service in the High Peak and I feel privileged to work for Blythe House. Being able to die at home provides so much comfort to the patient, surrounded by people and things that they love.’

Sheila Darcy qualified as a nurse specialising in mental health in 1976, beginning her career at Cheadle Royal Hospital. The self-confessed night owl undertook different roles covering mental health, accident and emergency, Alzheimer’s and acute services, at local hospitals including Stepping Hill and Manchester Royal Infirmary.

The Disley resident found out about Blythe House’s Hospice at Home service and called Ruth Brown, the service manager, to find out more. Ruth explained that there were opportunities available, and Sheila became a night-time healthcare assistant for the 24/7 service in April 2016.

Sheila explained: ‘My dad was diagnosed with cancer when I was nine, and he was nursed at home by my mum for three years before he died when I was 12. I have been involved with patients who are dying, or who have died, throughout my career including caring for anxious or upset families. The Hospice at Home healthcare assistant role just seemed to fit perfectly with my previous experience.

‘I have always worked in hospital settings, so adjusting to a community role and visiting people’s homes was strange at first but wow; it is an absolute privilege to do this job. Families really want you to be there; you can be the person to watch over the patient and gently nudge a loved one or family member to say: “Their breathing has deteriorated, would you like to come in and sit with them?” Sometimes they are so frightened; but just being there you can help to support them through very sad times.

‘One evening I arrived at a patient’s home and I knew that the person sadly didn’t have long left. I said to the family: “Let’s sit together and hold hands” and we gathered around the patient’s bed whilst the family shared stories and anecdotes. The patient died not long after but it was so comforting to know the family shared precious moments beforehand.

‘Someone died recently who I had been spending two nights per week with since April – I was very, very close to her, and it is so sad when someone you care for does die. The day we stop being upset that our patients have died is the day we stop doing this role.

‘Working through the night with patients is so precious because it is such a vulnerable time and I am always resourceful with crosswords, knitting or reading. One night, in the run up to Christmas last year, a patient asked me if we could sing some carols. I sat on her bed and we were singing Good King Wenceslas when she suddenly stopped breathing. I went to wake her husband and said I am so sorry but she died so suddenly – he said: “Don’t worry, because she died, doing exactly what she loved – singing!”’

‘I have never worked anywhere before where people make you feel so welcome. You really hope you’re going to make a difference, and you are so very appreciated by patients and their families.’

Kevin Hawley, affectionately known as Huggy, started to attend Blythe House in 2018 after being diagnosed with carcinoid syndrome. Huggy’s loveable nickname came about in 1976, when he was a firefighter in Derby; with colleagues taking inspiration from the hit TV show, Starsky and Hutch.

Huggy, who worked as a firefighter for 35 years across Derbyshire including in New Mills, Glossop and Buxton, had retired from the service and was working as a caretaker at Alderbrook Day Care Centre in Chinley when he started to feel unwell.

The passionate fundraiser, who many local people might know from running Black Diamond Discos, now takes daily medication including injecting himself three times per day.

Huggy explained: ‘I am member of the patient participation group for a doctor’s surgery in New Mills, and Emma [Richards, Information and Support Facilitator at Blythe House] came to give us a presentation about the hospice’s care and services in the local area. I thought to myself that I might be able to access some support from Blythe House, and I got in touch.

‘I started to come along to the Living Well day service, where I have been able to access complimentary and art therapies, mindfulness courses and regular clinics with Dr Sarah Parnacott [Consultant in Palliative Medicine].

‘I have found the mindfulness course at Blythe House really, really good. You do get pretty low when you’re feeling unwell all the time. Some people say it is rubbish but dealing with the stresses of illness is one of the hardest things you will ever have to do. If you are going for a scan or you’re worried about other aspects, you can pull techniques out of your toolbox to help you, that you’ve learnt here at Blythe House.

‘Having reiki, an alternative therapy, has been life-changing. Carol [Stanier, Complimentary Therapist], noticed during one of my treatments that I stopped breathing for a short time, so she ensured that I went to speak to Dr Parnacott. After a meeting with some questions, Dr Parnacott referred me to Chesterfield Royal Hospital where I was then diagnosed with cystic fibrosis of the pancreas. Thanks to the quick thinking of Blythe House staff, I am now able to manage the disease with specialist breathing machinery.

‘I once enjoyed a hand massage given by another complimentary therapist at Blythe House. After the day session had finished, I was driving to Rhyl for a fundraising event with the Masonic Charitable Trust. I felt so relaxed after a small but special treat; it was so nice to have a little bit of “me time.”

‘I’ve also really liked getting involved in the art therapy, working with pastels and watercolours; the service, including volunteers and patients, really helps to open up your mind.

‘The catering staff and volunteers are so courteous to your needs here too. I found my diet changed dramatically as a result of my illness but they catered to my requirements and the food was always delicious.’

After a stint with the Living Well service, Huggy was feeling better and was discharged to start attending our Moving On group, hosted monthly for patients who have been discharged from the service to attend for up to six months, addressing any worries or concerns that they may have.

But it wasn’t goodbye for Huggy! The musician and all-round entertainer came back the hospice regularly to play music and sing to patients, which always went down a treat!

More recently, Huggy, who is a member of a local Mason’s group and has raised funds for charity for much of his life, has started to attend the Living Well service due to complications with his illnesses and feeling unwell again.

He is taking part in the writing therapy group and continues to support the fundraising team with events including putting a good word in with Santa to make sure he attended the hospice’s Christmas fair back in November!

Find out more about our services and how they may be able to support you or a loved one.

‘Art therapy keeps you going and makes you feel better’

Lynne (right) holds up her wall hanging with help from Catherine and volunteer, Jane

Lynne Bould from Fairfield started to attend Blythe House’s Living Well service in February 2019, after her breast cancer diagnosis. She has found solace in the service’s writing group, and more recently the art therapy, creating intricate wall hangings which she hopes to display at home.

Lynne explained: ‘Last year, I went for a usual mammogram and was called back to the hospital to discuss my results. I was going on holiday to Amsterdam at the time, so I said “I’m still going away!” and I didn’t worry about the results whilst I was there. When I came home, I went for the appointment and I just kind of knew something was wrong. As a nurse and healthcare assistant in the local community, I am clued up on this kind of thing, so I knew they were going to tell me bad news, and I was diagnosed with breast cancer in June 2018.

‘When I first started to come along to Blythe House, I attended the writing group with Julian; it was brilliant and gave me a way to express myself and the way I felt. After the 12-week course, I was interested to start something new and I just came along to the art area at the hospice. I had always liked art at school but life just got in the way, as it does; having two daughters, two grandchildren and looking after my mum and dad, as well as working as a carer; I never had time to enjoy artwork.

‘I started off painting and doing a bit of sewing, and then Catherine [Serjeant, Art Co-ordinator] said that we were going to do some silk painting with a printing plate, and I started work on my wall hanging. I love the tropical look so I created a bit of a jungle theme using buttons, jewels and other bits. I love having a good root through all the items; I am like a magpie and love bright colours!

‘I’ve now done three wall hangings since I started coming to Blythe House and I’m just starting on a fourth. I also work on them at home; if my husband is watching something boring on television, I’ll head off to sit at the dining table and work on my wall hanging. The art therapy keeps you going and makes you feel better.’

Find out more about our Living Well service at Blythe House.

It was Louise Eyre’s friend who called Blythe House to make an appointment on her behalf, after she was diagnosed with fibrotic cryptogenic organising pneumonia, an extremely rare form of lung disease.

Louise led a very active lifestyle prior to her diagnosis in January 2012, including ‘walking for miles’ on Duke of Edinburgh trips with students from Chapel-en-le-Frith High School where she was a teaching assistant.

The disease causes inflammation and scarring of the lungs, obstructing the airways making it very difficult to breath. Louise said: ‘Symptoms of my illness came all of a sudden; I just could not breath and was admitted to Stepping Hill Hospital where I stayed for three months before having a biopsy which confirmed my diagnosis. The results of my illness are life changing; I used to be very active but I can hardly do anything anymore.

‘A friend of mine suggested that I should get in touch with Blythe House; up until then I thought Blythe House was only for people with cancer! I came along to meet the nurses, and started to attend the Living Well service in August 2018.

‘I have been overwhelmed by the support from all the staff; I do not know where I would be now without them. I have been able to get involved in art therapy, Tai Chi and have reiki [a complimentary therapy]. All of these things have helped me to stop thinking about my illness all of the time. The activities and treatments give me a reason to want to come to Blythe House every Wednesday to meet people in the same position as myself.

‘I have gained more confidence in dealing with my illness and I have accepted that I am not going to get better. I have been helped in so many ways by staff and other patients, and have been given valued advice about how to manage my life as it is. I did have very bad anxiety before I came to Blythe House but thanks to tools I’ve learnt here, I am able to manage it better.

‘Dr Parnacott [Consultant in Palliative Medicine], who I see at Blythe House in her out-patient clinics, has provided so much help and symptom management support to me. I truly believe if it was not for the help at Blythe House, I would not be here today.’

As well as accessing services at the hospice, Louise has done her fair share of fundraising to help keep them free for local patients like her to access. She took part in the first ever Glow Twilight Walk in July; organised a raffle of Easter hampers alongside dear friend and fellow Blythe House patient, Ann Hampson; and is set to organise another raffle for Christmas very soon.

Louise’s family also took part in the Jingle Bell Jog in December 2018, and her granddaughters are set to raise funds once again at the event on Sunday 1st December this year.

As a result of visiting Dr Parnacott’s clinic, Louise was asked to take part in filming for the hospice’s 30th anniversary commemorative video earlier this year too.

Louise ended: ‘If you’re living with a life-limiting illness in the High Peak, please speak to your doctor about coming to Blythe House, or just get in touch yourself. It has been one of the best things I ever did coming here.’