Patient Stories - Pam

“I worry most about the kids. I struggle to say these words without crying but, as a parent, you want to be there to protect your kids and console them when they are unhappy.”

I’m 46 years old, married to Lee and have two children, Matthew who is 7 and Martha aged 10. My children keep me busy, it’s all go! But they also ground me. They don’t let me wallow in self-pity and keep me focused on the important stuff.

I have a rare form of cancer which is extensive and affects my nerves and blood. I was diagnosed in August 2020 and although the cancer is all over my body, my heart is most significantly affected.

Before being diagnosed, I had been working full-time and had only been back at work about 18 months having taken time out to be a full-time mum. Lee and I had got into a great routine of juggling the kids what with the school run, after schools’ clubs and all the needs which come from having children. The kids were now a bit older, not as dependent; I mean they could now dress themselves and stuff so not like when they were really little. I love doing whatever the kids are doing so playing with LEGO, special treat film nights on a Friday where we chill out, eat popcorn and watch a film together, Sunday walks, you know, just normal things you’d do as a family. I have a great group of friends too. I guess, we are like many families.

Lockdown 2020

When we went into the first lockdown in March 2020, I had a phone call on the Monday from my Boss telling me my role had altered in response to the pandemic. It was a crazy, busy time and I was working long hours, skipping lunch a bit and I noticed I was losing weight. I just put it down to being so busy and working around the clock. I actually lost a stone in a month and half, but I didn’t register really at the time.

I’d been having a horrendous pain in my shoulder which was becoming worse. I put it down to sitting for a long time and being at a different desk to the one in the office. My GP prescribed me with painkillers. I had diarrhoea but I just put it down to the new tablets. Then I started to feel tired in the day and had to lie down. It was a really hot summer that year and I had to start taking a nap at lunchtime which just wasn’t like me, but I rang my Boss to tell her. She immediately said I should call my doctor which I did. They did some tests which came back as “worrying.” My Mum died from bowel cancer. I then realised something was wrong.

The surgeon phoned me from the hospital to say he wasn’t worried I may have bowel cancer as I had been having regular checks for it because of mum but he did want to do further tests. We were going on holiday the following week to Devon and I asked the surgeon if he could log it in my notes in case they needed to get hold of me. I went along for my examination at the hospital on the Thursday and we went on holiday on the Monday. By the following Thursday I’d still not heard anything, so I convinced myself nothing was wrong. The surgeon did have my results and when he called me, he said he wanted to just let me enjoy my holiday with my children. He told me I had cancer and it was incurable.

Understanding my diagnosis

I just felt I had so much to do and so little time to do it in. It was just terrifying. Even now it’s really weird and still feels like I’m talking about someone else. I’m very matter of fact about it. Once I got my full diagnosis, I was like this is it, I can read about it, I can do as much as I can to live as well as I can, I’ll do what the doctors tell me then the rest is out of my hands. I tend not to worry except in the small hours of the morning. That’s when I worry. I worry most about the kids. I struggle to say these words without crying but, as a parent, you want to be there to protect your kids and console them when they are unhappy. I know what crippling grief feels like, I lost my mum and our first baby. I know my kids will feel this cripplingly grief when I’ve gone and that it’s me that’s caused my children that grief. I won’t be here to do anything about it.

Early on when I was diagnosed, I said to the kids that the Doctors can’t make me better, but they have drugs which will hopefully help slow it down. I used a metaphor to them of cancer being like a naughty child in my body and the naughty children (which were the cells) had been allowed to run around in my body and make friends with other children in my body and make them naughty. The doctors can’t make the naughty children go away, but with medication, they can make them stand still and not make any more friends. The kids took it in their stride. Matthew’s determined he wants to kill all cancer. Martha asks me what if she forgets what it feels like to hug me.

I’ve slowed down a little bit, but I’ve not changed too much. It’s almost like the kids are used to mum having cancer now. I say to the kids I’m not going to be alive as long as other people’s Mummy’s. I just worry they’ll get so used to me having cancer and it will then hit them so hard when I do die. I’m screaming on the inside when Martha asks me if I’ve washed a particular top she wants to wear. I think, get some perspective! But, then again, that’s what a normal ten year old girl worries about.

My husband is very good at keeping us all very normal and treating us no different to how he did before. Not sure how he does it, but he does.

Speaking to Keech

When I was diagnosed, I was struggling to get all the support I needed. It’s hard to describe but I felt like I was drifting. Where was the support in my community? I didn’t know where to turn or who to turn to. I had the consultant for things like treatment, but it was more the physical, emotional and practical support. Also, the support for the kids and my husband – not just for now but also when I’m gone. I knew of Keech and I knew it was a brilliant hospice. I know now one of the first things I should have done was call them and ask for help.

I rang a friend I knew who worked in healthcare and said I was struggling to get any community support and she suggested I contact Keech – so I did. I looked on their website and could see just how much support was on offer. From counselling to emotional and practical support, to helping me to plan support for the kids and Lee. It was all there under one roof and it was free. I just filled in the quick and simple form online with a few of my details, it was so easy, and I referred myself to Keech. The moment I pressed send, I felt relief. The next day, Kim, one of Keech’s nurses called me. It was that simple.

Kim and I spent a good hour chatting, she had so much time for me. We spoke about how I was feeling, my worries, she gave me tips, linked me up to a stretch and balance class which Keech run to support me physically. At the time my legs were itching so Kim prescribed some cream and sent it to my local pharmacy for collection. I had no idea my local hospice could do all of this.

I also talked to Kim about counselling for the family and support groups. The day after I’d seen Kim, Steve from Keech called me and he talked me through various support groups which Keech offer and all their support services. He spoke about the idea of starting to make a memory box and how some people make an instruction manual. It really resonated with me. One of my worries is about how Lee will cope with the kids and the instruction manual would let me write what to do when Martha needed skin care advice for example or who in our family, like my sister, can talk to her about more girly things. It was a really useful hint and Steve just got it from the start that my biggest worries are Lee and the kids and making sure they’ll be ok when I go.

Lee’s already been to Keech and they’ve supported him with counselling. He was placed on the GP waiting list, but Keech met with him straight away and gave him so much of their time. It’s that kind of support which makes me love Keech so much.

Don’t be afraid to ask for help

I’d say to anyone who is given the diagnosis of a life-limiting condition for which there’s no cure, make sure one of the first things you do is call your local hospice. They have so much support and a tremendous range of services on offer. They can support you as much or as little as you want and will help you live well for as long as you can. It’s that physical and emotional wellbeing that Keech gives me and my family. Day to day, I know Keech is there for me, and I’ve stopped feeling like I’m drifting. It’s so good to know Keech is there for as long as we need it and for free.

Getting the diagnosis is bleak. But your diagnosis does not mean you cannot live beautifully. You can live and live well. Change what you think about hospices. There is so much support there that can help you live as well as you can for as long as you can. They have such expert knowledge; the time and they genuinely care.

When you are diagnosed there’s things about your condition which play on your mind, – the more everyday stuff – that you wouldn’t want to go to your GP for. There’s that bit in the middle about community, about meeting people who have a similar condition, finding a way that helps you live well for as long as possible and knowing you are fully supported. Your local hospice fills that gap. They can fill that void. They offer the support you need, what your family and also your friends need, when you need it and it’s all packaged up so well and provided for free. If you need too, please call them.

Just £27 could provide an art therapy session to help a patient or loved one come to terms with a diagnosis. If you want to donate, please click here.