Jakki Pinsley is a member of our Customer Services Team working on the reception desk in the main building of Heathlands Village.
She lives locally, in Prestwich, having moved with her family from Hull to Manchester in July 2011.
Here speaks about her life – at work and at home.
My job is both very rewarding and challenging. I’m the first port of call for people ringing in to The Fed or coming to the reception desk which is split – a public reception for visitors and a private one for people who live at Heathlands Village.
People may think that all we do all day is let people into and out of the building but it’s actually an extremely busy job. We help people with day-to-day problems, deliver post and newspapers to residents, frank the post, input data on various systems, order taxis, direct people to the right area, take payments and help other departments with administration. Just a small taster of what I do!
People have no idea I’m a carer
Most people who come in contact with me at work have no idea I’m a carer for my husband Elliot. He is paraplegic and confined to a wheelchair.
In 2005 he became very poorly with a form of cancer known as Hodgkin’s Lymphoma. It affected his mobility and motor skills. He was 47 at the time.
Following treatment he went into remission but had to be taught how to walk, write, dress, talk and feed himself again. We were told his illness would not come back but a year after we moved to Manchester he became unwell again. Tests showed the lymphoma had returned.
A second cancer roller-coaster ride
So the roller-coaster ride started again: hospital visits, chemo, arranging appointments, physio, scans etc. Eventually he was offered stem cell treatment and we had to go through an aggressive programme to prepare him and then the most grueling treatment ever.
It was awful to watch. He was deeply affected by the disability brought about by his illness. He’d been very fit and active before he became poorly. But he’s an inspiration to all that know him because he has been so brave and takes everything in his stride.
The damage the cancer has done will not go away and will always affect his mobility and nerve system. He’s had help from medical teams, such as physios, but unfortunately he is just the same. The second time damage makes it all the more difficult for a better recovery with his walking.
“I don’t have time for this! I’m my husband’s carer!”
During treatment for the return of his lymphoma, while Elliot was in respite care, a letter dropped through my door inviting me to my first mammogram. Within four days of going for this I was asked to go to the Genesis Centre in Wythenshawe Hospital. I knew immediately that they had found something.
After biopsies, scans and more mammograms I was diagnosed with breast cancer. I was stunned. I asked the doctors to check they had the right person and told them,
“I don’t have time for this! I’m my husband’s carer!”
How was I going to cope? But I’d seen Elliot go through far worse than me and knew I had to find the courage and begin my own round of treatments including operations and radiotherapy. I managed to work full-time through all my treatment.
Thankfully I now can say I am a cancer survivor. I’ve beaten the illness though I still have to go back for yearly check-ups.
So that’s my background: wife, carer, employee and patient.
A typical day in my life
My day begins at 6am when I wake Elliot and help him to the bathroom by which time his home-carers have usually arrived. Without them I wouldn’t be able to work. I feel guilty leaving Elliot at home but I need have some sort of life outside of being a carer.
They come four times a day to help him with his day-to-day living activities. In the morning they help him get bathed and dressed and prepare his breakfast. At lunchtime they come to check he’s alright and make his lunch and a drink. Around 4pm they come and give him a cup of tea and a biscuit and in the evening get him washed and ready for bed.
Whilst the home-carers are with Elliot I get dressed and have my breakfast. Then, if I’m working, I prepare our meals for the day. I check he has his medication and anything else he needs before kissing him goodbye and leaving for work.
Part of The Fed Community
I’ve only been at The Fed for seven months but I love the job and the people that come with it. My colleagues on reception are amazing to work with and so are the other members of staff that I’ve got to know in other departments. Everyone is so friendly and helpful.
I love interacting with the residents and helping to make their stay with us enjoyable. I feel like I’m now part of a community.
Longer hours but more time together
My usual work shift is 8am to 8pm and whenever I get the chance, which isn’t often, I ring Elliot. I work three and a half days and have three and a half days off. It’s brilliant as I get to spend more time with Elliot than in my previous 5 day-a-week job, even though I actually work slightly longer hours.
And Heathlands Village is an especially good place for me to work as I only live five minutes away. If I was needed in an emergency I am only around the corner. It gives me peace of mind.
Home – for my next shift
When I finish my Fed shift I go home and start work again: tidying up; washing up; seeing to laundry; doing ironing; preparing dinners. Once it’s all done I make us a cup of tea and sit down with Elliot to catch up on Emmerdale and Coronation Street which he records.
Around 11pm I help him get ready for bed – not an easy task for a tiny lady like me and a 6ft man who is very well built. (I’m not giving his weight away! He would kill me!)
Once he’s settled I lock up and I get myself ready. Then I drop into bed. Bliss!
No such thing as a lie-in!
Days-off don’t mean I get a lie-in! I’m still up at 6.00am and tend to do all my cooking, washing, ironing, shopping on these days, as well as cleaning and tidying.
I like to take Elliot out as he is on his own so much when I’m at work. Getting him into the car is a major operation. I help him with his coat and off the settee, to his wheelchair with his zimmer and then into it. We have a transportable ramp which I use to wheel him down backwards out of the flats where we live, and then take him to the car. He transfers himself into the car while I fold up the wheelchair and pop it into the boot along with the ramp. The whole process takes about 15 minutes.
Wherever we go has to be disabled friendly, with easy access and no steep inclines – places like The Fort, Trafford Centre and the Lowry. If he’s very lucky I take him to the supermarket! Ha-ha – he is never happy when I take him there because he says I spend too much money!
Natalya – the best medicine!
Sometimes we look after our two and a half year old granddaughter, Natalya. She’s the best medicine. She’s a scream. She got some wellington boots a few weeks ago and refused to take them off and insisted on going to bed with them on!
She sings to herself and chats away all the time! We call her little Miss Chatterbox. She’ll say to us ‘Hello Cheeky’ and because it makes us laugh she does it all the more!
It’s the best feeling in the world to be a grandparent! And not only do you have more patience but you can also give them back when you’ve had enough!
Getting the right support
I couldn’t cope without support and fortunately we have lots – from our family, friends and particularly The Fed which has been brilliant for us.
They arranged for Elliot to be visited every week by a befriender. They set up his home-care visits and to attend day-care at The Nicky to help him socialise again. They made arrangements when he needed respite care.
The Fed has helped get me involved with other carers so I don’t feel so isolated and they checked we were claiming the right benefits.
The whole team has been an amazing: Tsipi, our volunteer coordinator in the Time For You team; Jacqui, my carers’ advice worker; Helen, Elliot’s’ social worker and Sue, the Referrals and Advice Officer. We are extremely grateful for their help, patience and support.
Another charity, Chai Cancer Care, which supports people affected by cancer, has become a huge part of my life. They give me the help and support I need due to not having family living in Manchester. One of their therapists gives me a weekly massage which really helps me to relax. It’s the most beneficial hour of my week!
So much has been given to us that I decided to join some charities “to give back” by helping with fundraising events. At the same time, it’s helped us make some wonderful new friendships.
And now my baby sister!
In the last few weeks my baby sister, Debra, has been diagnosed with breast cancer and is now going through treatment herself. We have different strains of the disease and have each been told that it is therefore not “in the family”. It’s just so weird that we were both diagnosed with it at the same time of year and age.
After all Elliot and I have been through, watching my sister go through this is the most upsetting thing yet. I guess it’s brought it all back to me or maybe it’s that when it’s happening to you or your husband and you’re right in the eye-of-the-storm, it’s easier to be strong. I dunno.
You never know how strong you are till you have no choice
I’m not angry that Elliot and I have both gone through this tough time. It has helped me shape up into a better and a stronger person. I just tell people it’s “a blip” and we just get on with it.
What is the point of moaning? People have their own rubbish to deal with too.
And it’s taught me that you never know how strong you are until being strong is the only choice you have!