A vital part of the community

Karen Carr with her father Brian, who passed away in November.
Karen Carr with her father Brian, who passed away in November.

To mark national Hospice Care Week, which starts today and runs until Sunday, we take a look at the role that HospiceCare North Northumberland and plays in the region.

HospiceCare North Northumberland, which has offices in both Alnwick and Berwick, is the main provider of palliative care in north Northumberland, delivering support to adults who have life-limiting illnesses, as well as to their families and carers. Karen Carr, 50, from Shilbottle, is one person who has found out just how important HospiceCare is. This is her story.

Karen Carr with her husband Graeme.

Karen Carr with her husband Graeme.

If someone had said to me seven years ago I would be sitting writing this story I could have never believed it.

May 23, 2008, was one of the best days of my life, marrying my soulmate Graeme!

Little did we know our world was about to come crashing down only two months later.

One day in June I took a bath. The sponge was on the sink out of reach so I washed myself with my hands, and while washing my left breast, I found a large lump.

Feeling sick and panicking, I wasted no time in getting a doctor’s appointment.

The GP suggested it could just be a benign cyst and made an appointment for me to see a specialist at Wansbeck Hospital. Three weeks later, Graeme and I took the long dark journey to get my mammogram and ultrasound.

As soon as I had them I was asked to wait and see a nurse, who said that I needed an immediate biopsy to find out if it was breast cancer. Following the procedure, we waited for 40 minutes and on returning to see the nurse there was a consultant there too, who gave us the shattering news that I did have breast cancer.

All I could think of was death and how to tell my family and kids.

At home, we told my oldest daughter Nikki, as well as mam and dad first. Nikki then waited for my two sons, Ryan and Tom, and granddaughter Isla to come home from school. She was very brave and we decided she should tell them for me in case I broke down and this would frighten them. This is where my journey to fight started.

I went to the hospital with Graeme and Nikki to have the lumpectomy and lymph nodes removed from under my arm.

This was a success and I started four-and-a-half months of chemotherapy. Four weeks in, I lost my lovely blonde hair but I decided to have fun with it by getting different wigs. Being optimistic and outgoing with a great attitude towards life, I decided not to dwell on my treatment and make light of the situation, trying to still be the fun person everyone knew me to be.

A chance meeting with Margy, another patient going through chemo at the same time, made our treatment fun. My family took it in turns to come with me and the laughing and joking made me feel calmer and seeing me happy made them happy.

Having five children between us, I had to remain strong.

Next, it was five weeks of daily radiotherapy; these were the darkest periods for me. I only shared my feelings with my husband as I wanted to protect the kids. I tried so hard to carry on as normal, but I was starting to lose my self-confidence and positive attitude.

Spending time with terminally-ill patients had such a negative impact on me. When you first hear cancer, you automatically think you are going to die. I had also made the decision to attend radio sessions alone – looking back it was the wrong thing to do. I should have taken a family member or friend to support me.

Finally, six months after my diagnosis, I got the all-clear, the cancer was gone. Life was good and things settled down.

Months later I started getting a lot of pain in my left hip which I put down to an old back injury. However, the pain became so intense that following an emergency appointment at Alnwick Infirmary I was sent for an MRI which showed the cancer was now in my bones. I was immediately referred back to the Wansbeck to see a consultant.

He booked me in for a hip replacement but in the meantime my hip actually fractured, I was in constant agony and did not realise I had been walking around with a fractured hip. After the operation, I had more radiotherapy. This has left me with a lot of muscle damage on my left leg meaning I have to do physio four times a day and have a lot of painkillers to get me through the day.

Margy, who is now a friend for life, encouraged me to make contact with my local hospice, HospiceCare North Northumberland, to get some emotional support, which I was truly in need of.

My first reaction to the word hospice meant death and this was not for me.

However, Margy was not a person to give up, because she was actually accessing HospiceCare services at their Day Therapy Centre, Berwick.

She told me ‘trust me, even if you go just once it’s fun, you will meet new people and have a laugh!’ One week later, thanks to Margy expressing the goodness that can come from badness, I would never look back.

I rang HospiceCare and after chatting to clinical manager Sue Gilbertson, I decided to attend one of their Wednesday morning therapeutic drop-in sessions.

On arrival, the first thing I felt was the warmth and friendliness of all the staff.

There were about six patients, some with their partners and some on their own. Once I got talking to everyone I realised it was just the tonic I needed.

Before my treatment I was larger than life, loved partying, keeping fit and most of all looking after my family – that was my job in life.

Somewhere in my journey with cancer, I lost myself. I felt so isolated at home 24/7. My mobility in my leg means I can’t manage to even walk to the local shop so I have a lot of time to think about the worst case scenarios.

However, attending the therapeutic weekly drops-ins I have now got my old self back. I feel like we are a proper family and our friendships continue outside the hospice.

I sometimes have a one-to-one session with Sue Gilbertson, I can tell Sue things I couldn’t share at home.

The drop-in sessions are not negative or what you would expect them to be and considering what everyone is going through the atmosphere is always happy and warm, often laughing hysterically at each other’s stories. It feels like normal life.

Some weeks I still have low moods, but I go to HospiceCare knowing this will lift me and I immediately feel like a different person.

I could never stop going to the sessions as it has given me positivity and that reflects in my home life. If I’m happy so are my family.

The joy I get when a new patient joins us and they think I’m one of the volunteers because I don’t look like a cancer patient!

HospiceCare became even more important to me when on February 14, 2014, my beloved father Brian was diagnosed with chronic myeloid leukaemia and my own cancer had spread to my liver.

We were both enduring intensive chemotherapy at the same time, but sadly, on November 7 last year, my dad, my hero who I worshipped, lost his battle and passed away.

These are and have been, the darkest days of my life, he was simply the best and I couldn’t imagine a life without him. Overwhelmed with grief and still undergoing chemo, which I will be on for the rest of my life, the only way I could deal with it all was to be supported by HospiceCare and their wonderful bereavement support service. Without it I would have never got through.

Being supported by HospiceCare really does help me make the most of my life, both mentally and physically. Without their support, I would have sunk into a deep depression.

Having cancer is not my death sentence, it’s about getting up each day living and appreciating life as best I can, knowing I have got the endless support from my HospiceCare family, as well as my husband, fantastic kids, parents, grandchild and friends.

Margy and I have become great friends and I can’t thank her enough for pointing me in the right direction to getting my old self back.

Therapeutic drop-ins are a lifeline

HospiceCare North Northumberland’s therapeutic drop-ins are for patients, as well as their carers and families. Sessions take place in Alnwick, at Castleside House, on Wednesdays, and in Berwick, at Hazel Marsden House, on Mondays, both from 10am to 1pm.

Trained and experienced complementary therapists offer their time freely as volunteers and provide a range of complementary therapies such as reflexology, massage and reiki.

Attendees may be offered a treatment by the therapist when you attend the drop-in or alternatively book an appointment. These treatments are also available to carers and family members.

As someone’s condition changes and deteriorates, the charity takes the hospice into the person’s home to continue providing the care and support needed.

The therapeutic drop-ins are also for those people and their families living with other illnesses, such as heart failure, motor-neurone disease, multiple sclerosis and chronic breathing difficulties. People can be referred to the therapeutic drop-in by a district nurse, GP, Macmillan nurse or Social Services. Alternatively, call 01665 606515 or just drop-in.

Created in 1995, it offers a range of other services, including bereavement support, Hospice at Home and a lymphoedemia service. It provides care and support for more than 250 patients and their families each year. All the services are free of charge and a GP referral is not required. Despite this, it receives just 15 per cent of its annual costs from the NHS, meaning it has to raise about a quarter of a million pounds each year from the local community and other sources.