Embracing the time we had left changed everything

After being given 6 months to live over 3 years ago, Jacky's mum found a British Lung Foundation Breathe Easy support group. Now, she's still here, and living life to the fullest!

"Without Breathe Easy, we might not be where we are today," says Jacky

My mum is 81 years of age, and she was diagnosed with COPD, or chronic obstructive pulmonary disease, including emphysema, 10 years ago.

It’s been a really difficult journey.

When she was diagnosed, we really didn’t know much about lung conditions. We relied on our GP, who only had limited information. We weren't told anything about support groups, self-management or pulmonary rehab.

It ended up with mum living at home with my dad, dealing with constant chest infections and relying on me to care for her. 

It felt like we were fumbling in the dark.

We just didn’t have any answers. It felt like we were fumbling in the dark. We just accepted that this was what life was like now. 

Then, about 3½ years ago, we had some awful news. They told my mum that her COPD and emphysyma had progressed, and she only had 6 months to live. 

I knew we had to make the most of my mum’s last months. I had no idea that what we were about to do would change things for everyone for the better! 

Making the most of her final months. 

I wanted to do things with my mum that she'd enjoy. But it wasn't easy to find out what, as mum often felt self-conscious because of her coughing and oxygen. 

"So let’s just give it a go," I said to mum. 

Then one day, at the church I attend, I found a leaflet about something called Breathe Easy.

I felt like we had nothing left to lose. We knew there'd be other people there with lung conditions. "So let’s just give it a go," I said to her. 

Our first day

My mum was nervous on the day, but we felt welcomed straight away.  The group was really fun and friendly.

The group was really fun and friendly. We felt welcomed straight away. 

They had a speaker come in and teach us the right way to use your inhaler. I thought, my mum doesn’t do this - so straight away we benefited from attending. It made such a big difference. And because everyone had a lung condition, or knew someone who did, it was really encouraging for her.

We decided we would go back again the following month. That time, we had a lady in to speak about bronchiectasis

As the group went on throughout the year, we learned loads of things that we never would have known.

And my mum kept on going too.

Breathe Easy Liverpool South's fundraising day, with Jacky's mum first on the right

Learning about pulmonary rehab changed everything

Until we went to Breathe Easy, we’d never had any real advice about self-management or pulmonary rehab. Our GP had such limited information. But by going, we found out more and someone taught us that you can breathe through the breathlessness.  

It made such a difference. Before, I wanted to keep mum safe and wrapped up in cotton wool. I was so worried that PR would be harmful. But the group taught me that exercise is actually good for the lungs, even if it does make you breathless!

I never would have learned that if we hadn’t gone along.

When mum started attending, she was so weak because she had stopped walking. Now, because we’ve learned how to maintain and manage her symptoms,  she’s doing so much better. Right now at the time of writing, it’s been 18 months since she’s had a chest infection!

And our consultant, who told us over 3 years ago that she only had a few months left to live, is so surprised! 

The helpline is worth its weight in gold

One of the most wonderful doors the Breathe Easy group opened was the number for the British Lung Foundation's helpline.

I’d sometimes struggled to stay on top of my mum’s medications or with questions about her condition. Now I felt like I had a support network. 

Call our helpline

Our helpline is open from Monday to Friday, 9am to 5pm, on 03000 030 555. Find out more. 

I can ring up, and speak directly to someone very nice, who’d then organise for me to get a call back within 24 hours. We no longer had to wait for the next consultant appointment to get answers. The helpline is worth its weight in gold. 

I want to spread the word

All of this has come from my mum and I deciding that we had to make the most of the time we had left. But now we’ve gone much further than that. We’ve learned so much from the support groups, and the nurses and speakers the group has had come in, plus the helpline, and of course the website and the information there. 

I’m so happy to be a part of Breathe Easy Liverpool South. Now I’m giving something back by volunteering with the group helping run it.

I want to raise awareness and give people the information I wish we’d had at the beginning. If I can do that, then people might be as fortunate as me and my mum, and the network we’ve managed to build. 

The end doesn’t mean the end

"You wouldn't believe my mum was 81," says Jacky

We don’t focus on the end. Instead, we like to have something to look forward to. And with the group, there’s always so much on - we’ve been out for meals, afternoon teas, fundraising events, you name it.

Even if you’re coughing or wheezy, everyone’s in a similar boat. But my mum is a real inspiration to the other ladies! At 81, she’s really living her life to the fullest.

I wish more people knew about the support we had, and how, if the final stages of a lung condition are managed properly, just how good a quality of life you can maintain.  The end doesn't mean the end. 

I think that without Breathe Easy, we might not be where we are today. I’m very grateful that instead of fearing the worst, I embraced the time we did have. I hope everyone reading can do the same.

Find your nearest Breathe Easy group


Comments

Oh Jackie that is a wonderful thing you are doing for your mum Time is so precious but it seems to catch up with us.You are doing the right thing by giving your mum plenty of love which will give her the confidence to carry on living.Enjoy every moment with your mother and she will enjoy your company..At least you will have some wonderful memories of her Oh by the way I attended a Breathe Easy group in Leeds a long time ago but it moved to Pudsey so I could no longer attend I remember there was some very kind and understanding people there

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13 December 2018