"I realised it is just me, I’m the last in the line"
Needing a new focus and time to recover from a tough few years, Johanna Read put in an application for a golden bond place to run the Virgin London Marathon for St Helena.
“I remember I was in town trying on shoes for a friend’s wedding,” she recalled. “In the middle of the shop I had a call from the fundraising team to tell me I had been successful and was going to be running the Marathon!”
At the same time as applying for a coveted London Marathon place, Johanna also signed up for St Helena’s 40km desert trek in the Sahara, figuring if she can run the distance, she can walk the distance.
And then Johanna thought, why not add in a 250 mile Coast to Coast Cycle Challenge too? What’s more, since she would be trekking, running, and cycling in 2018, she decided she would be exercising anyway so thought she may as well sign up for the Around The Clock challenge too!
“I think it’s my way of saying thank you to St Helena because they were fantastic,” Johanna explained. “It’s given me a focus, a purpose, a new opportunity to do something different. It’s brought it home that you don’t know what the future is going to be. Three years ago I wouldn’t have said I would be running a marathon but I now have a charity place that I am passionate about. My fundraising events have been really well supported; people know the name of St Helena and know it is a good cause, and also that mum died in The Hospice so I want to support it.”
I started off in denial
Three years ago, Johanna was just about to step in to the school hall to lead the harvest assembly, when she received a phone call to say her mum had been admitted to hospital. A routine x-ray to determine the cause of her leg pain, showed cancer was destroying Johanna’s mum’s femur.
“I started off in denial,” admits Johanna. “It was a shock initially. I knew she was going for an x-ray but I hadn’t thought... I couldn’t process it. Even when she went for surgery I still didn’t think it was serious.
“I had done what they say not to do; I had googled it. I thought, well, life expectancy is 10-15 years, she’s 70, that’s an average life expectancy, that’s fine.”
"He looked at me and said ‘this is a critical illness’ and up to that point I hadn’t processed it."
Johanna remembers saying to her St Helena community nurse specialist that it was just a condition they just had to learn to live with. “He looked at me and said ‘this is a critical illness’ and up to that point I hadn’t processed it, I hadn’t taken it in. Then it all started to fall into place, I guess. My doctor referred me to St Helena for counselling.
“Mum and I had separate paths on this journey for a long time until they merged. I had to process and accept it, and mum had to get her head round it.”
I remember thinking I should be happy
By Christmas 2015 the hospital consultant advised it wasn’t looking good, and so to enjoy Christmas together as it was likely she wouldn’t get to Johanna’s birthday.
“I’m an only child, so friends came down and we did everything to make it nice for her. Then when it came to my birthday I remember thinking I should be happy, but I couldn’t get my head round it because at some point somebody was going to say that to me again. You’re just on such a rollercoaster.”
Johanna had moved in with her mum a few months before the diagnosis as a temporary measure while she house-hunted. She was teaching full time and buried herself in training and going to the gym where nobody could get in touch with her, then go home and cook for her mum and keep their domestic life running.
“Mum used to sign cards to one of my friends from the Wicked Witch of the West. She had a quirky sense of humour. She was a bit of a volcano. She loved making things. After dad died, she joined Colchester Operatic Society in the wardrobe department and would just be making costume after costume in her needlework room. She made all my costumes and clothes as a child, and she made her wedding dress, her mum’s outfit for the wedding, and her bridesmaid dresses.”
When Johanna was at secondary school her dad was diagnosed with the first stages of renal failure which progressed, and he developed a heart condition.
“It was a Sunday and they’d been out to the garden centre and had a really nice day. His blood sugar had dipped so he was a bit quiet in the evening as was usual. They were watching London’s Burning – I was in Sussex then yet we were all watching it at the same time. It was January and cold but he went to walk around the garden, and mum said she’d bring the coffee in when he got back. But he didn’t come back.
“She found him. He’d had a heart attack and that was it. So then it was just me and my mum.”
"So then it was just me and my mum."
I’m the last in the line
After her mum died with multiple myeloma in March 2017, Johanna went back to teaching for a term but found she was just exhausted. She was grieving for her dad too which she hadn’t done at the time of his death, instead filling her time to capacity so she didn’t have to deal with her emotions.
“I’ve got loads of great friends and they’ve been amazing but there are times… I was in the solicitors a while ago doing all the paperwork and doing my will, and I realised it is just me, I’m the last in the line.”
On the day before her birthday in January 2017, Johanna’s mum went to stay at The Hospice for pain control: “She had all her cards up and everybody was saying happy birthday to her. She was in for about a month in the end and came home again, but SinglePoint was always there. It was amazing. I couldn’t have got through the last couple of years without St Helena.
I now know it’s not just a building
There was a second stay at The Hospice at the beginning of March. Johanna remembers how accommodating the kitchen staff and volunteers were: “If she was asleep when the food came around they would take it away and when she woke up they would make her something fresh. It didn’t matter that they weren’t cooking at that time, they would just do something. One night there was curry on the menu and mum didn’t fancy it so they asked her what she would like instead, and she said a poached egg. They just went and did one and brought it to her. You go in and sit down and the first thing anyone says is ‘do you want a cup of tea?’.
“It did frighten me hearing the word hospice for the first time. You hear the word and you think that’s where someone goes to die. I now know it’s not just a building, a place; it spreads out and it’s almost whatever you need it to be. It isn’t just for the patients or where you go at the end; it’s there for your whole journey.
“I had a lot of my counselling mainly before mum died. Mum had her St Helena nurse who she could talk to and I had a counsellor who I could go through things with, like what I wanted to say but didn’t know how to say it. I could go to her and almost practice how I was going to have a conversation with mum and bring things up.
“I remember saying to the counsellor once, ‘what if mum dies at home, what do I do?’. She said to me ‘just call SinglePoint and they will deal with it’. She reassured me the chances of being on my own were quite slim because at the end stage there are generally nurses and people there, but if it happens, I'd just call SinglePoint and it would all be done.”
It’s as close to being at home as you can get
Johanna’s mum died in The Hospice: “Mum died on late Friday evening and we went back to see her that night, and it was nice to see the same nurse who had been treating mum. They were amazing. Apart from some of the photos, I didn’t want any of the things that had been in mum’s room and they just dealt with everything.
“They arranged the collection day and had everything ready for me and talked me through what to do next. It was difficult to go back in but then I remembered how calm and relaxed it was. Humphry my puppy loved it. I think it’s testament to how calm it was for a six month old puppy to go in and just curl up on mum’s bed and go to sleep. He’d trot around with the nurses and go and see other patients. You could have your own pillows, blankets; it’s as close to being at home as you can get.
"St Helena is there for the whole journey, for the patient, the families. It is so much more than you think."
“St Helena is there for the whole journey, for the patient, the families. It is so much more than you think. You have those points on your journey where you have an all clear or things seem to be OK, and then something hits you. But knowing there are people at St Helena who will support you all the way through means everything.”
To contact the St Helena Fundraising team, please telephone 01206 931 468 or email firstname.lastname@example.org , Monday to Friday between 9.00am and 5.00pm.
24 hour advice: SinglePoint 01206 890 360
SinglePoint is a 24/7 advice and support helpline which helps to coordinate an individual’s care with the hospice. SinglePoint also works alongside other healthcare services such as GPs, Community Nurses or Specialists.
To contact a patient at The Hospice please find the address and telephone number below. Phone calls can be made to patients at any time of the day or week. You can contact Inpatient Services 24 hours a day, 7 days a week.
The Hospice, Myland Hall, Barncroft Close, Highwoods, Colchester, C04 9JU
Telephone: 01206 845 566
You can contact The Hospice in the Home Team Monday to Friday, between 9.00am and 5.00pm on:
Telephone: 01206 845 566
Tendring community team
Telephone: 01255 221 222
You can contact the Joan Tomkins Centre (Colchester) Monday to Friday between 9.00am and 5.00pm on:
Telephone: 01206 848 163
Fax: 01206 752 245
You can contact the St Helena Tendring Centre (Clacton) Monday to Friday, between 9.00am and 5.00pm on 01255 221 222
Tendring Centre Postcode for Sat Navs: CO15 1EU
The HR Team can be contacted Monday to Friday between 9.00am and 5.00pm on 01206 931 466
To contact the St Helena Finance Team please telephone 01206 931 450 Monday to Friday, 9.00am to 5.00pm
The Volunteer Services team can be contacted Monday to Friday between 9.00am and 5.00pm on 01206 931 466
For all media enquiries between 9.00am and 5.00pm, Monday to Friday, please phone the Marketing and Communications team directly on 01206 931 464
If you, or a member of your family has a life-limiting illness and would like to discuss whether St Helena care services can help, you can contact the SinglePoint telephone service 24 hours a day, 7 days a week on 01206 890 360
To contact the St Helena Bereavement Support team please telephone the bereavement helpline: 01206 984 274, Monday to Friday, 9.00am to 5.00pm
The Learning and Development Centre is open Monday to Friday between 9.00am and 5.00pm and can be contacted on 01206 851 560
For more information on the St Helena Service User Group please contact Chair, Ken Aldred on 01206 751 397
To contact the Lottery team please call 0800 285 1390 or visit the website here, Monday to Friday between 9am and 5pm.
If you would like to write to or visit the Lottery team, the address is: Your Hospice Lottery Office Unit 6 The Atrium, Phoenix Square, Wyncolls Road, Colchester CO4 9AS.
Feedback, comments and complaints about St Helena care and support services may be made verbally or in writing to: Director of Care, St Helena, Myland Hall, Barncroft Close, Highwoods, Colchester, CO4 9JU. To speak to a member of our team, call 01206 845 566