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Joanna Lobb

An honest account

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My story

[p]I am a private and proud person and this is an honest, personal account and a brave declaration of my personal life...please respect this. [/p][p]I have recently been diagnosed with Lymphedema in both legs, although at the moment the condition is showing only in my right leg. Having been treated for cervical cancer 10 years ago, and having had 10 years of 6 monthly check ups, I honestly thought my ordeal was over. Naively I even put it all to the back of my mind- as much as you can, and carried on with my life. [/p][p]Running became my thing. Throughout the hard times in life, running was always there for me, for clearing my mind and my refreshing my soul. I found it liberating and I loved the feeling of discovering what my body could do when my mind pushed it to. [/p][p]In 2015 and 2016 I suffered with cellulitus but at this point there was still no connection made to Lymphedema. In 2017 I noticed my foot and ankle were swollen, this was just the beginning. My right foot and leg then became progressively more swollen over the weeks and months to follow, to the point that I could no longer fit my clothes on, I couldn't get my shoes on and I couldn't do my boots up. Driving and walking, sitting and standing for any time became painful and difficult. [/p][p]Battling with the NHS system to get a diagnosis was lengthy and tiresome but persistence paid off and I was eventually diagnosed with Lymphedema in June 2018. The Doctors at the hospital were both in denial and amazed, as it is incredibly rare to develop the condition such a long time after the initial cancer treatment. I was shell-shocked as during the long 10 years of check ups at the Hospitals, not once did anyone ever even mention this condition to me, I didn't know it existed. [/p][p]I was told that Lymphedema is an incurable chronic lifelong condition. Without proper management it can result in infections, disfigurement, pain and disability. [/p][p]Anyone who knows me will know I am a hardy soul, resilient and down to earth. But this was a real low blow to take. It was painful to walk or drive and sitting at my desk was incredibly uncomfortable as my limb became bigger and bigger. I was embarrassed about my disfigured leg and disappointed by my body letting me down. I desperately missed my running too. [/p][p]I was told at 38 years old that I was facing a disfigured leg and a lifetime of management of daily leg bandaging, massaging the fluid away and wearing full leg length compression stockings every single day for the rest of my life, no choice. I said goodbye to my toned legs, said goodbye to my skinny jeans, my pretty sandals. To begin with I was given a dark green thigh length compression stocking to wear every day and everywhere I went people asked me 'what have you done to your leg'. Coming to terms with the condition is hard enough, let alone being asked by complete strangers everywhere I went, every day. Going to work wearing this and being bandaged, each individual toe up to the top of my thigh. Watching all of the other young women with their shorts and sandals on. I know I shouldn't be ungrateful and I'm not, however I am sad about it. This is my life now.[/p][p]I feel like I am only half of me now, like I have left half of myself behind, left in the distance. [/p][p]Lymphedema is a breakdown of the lymphatic system, part of your immune system. The lymphatic system blocks and leaks out into tissue causing the visible swelling. The limb is best described as a stagnant pond rather than a free flowing river. The NHS offered very little help and seemed to have very limited knowledge about this condition. One day Googling, I came across a lady called Tina Martins. Tina works for a charity called Star Throwers. The day I met Tina was a game changer. Tina at Star Throwers has been an absolute lifeline to me. I was greeted by Star Throwers with unconditional care and kindness, all of the staff there made me feel supported and no longer alone. I cannot find the words to describe their kindness and care, from every person who works there. Tina's knowledge of the condition is so far beyond anything that the NHS have provided, it is both outstanding and concerning that the NHS who we rely on could be so poor. Tina has provided me with not only a shoulder to cry on but support and also the most amazing expert help, guidance, advice and management for my leg and the condition. Tina has been absolutely uplifting from the first moment I met her. Tina has taught me the confidence to live with this condition. Without Tina and Star Throwers I would be nowhere. It is incredibly hard for me to summarise this distressing journey that I have begun and the wonderful kind support and help that Star Throwers have provided me, just in one short story. However I can honestly say that without Tina and Star Throwers, I don't know where I would be, in the gutter maybe, feeling down and depressed and embarrassed to leave the house, distressed with the lack of help and knowledge and scared about the future. On my low days I still feel like this, but I now know I am not alone. [/p][p]I am running the Royal Parks half marathon on 14th October for Star Throwers, not for me. I feel honoured to have been given so much time and help from Star Throwers and I feel compelled to give something back. Star Throwers got me back on my feet and back in my running shoes, albeit not quite as far and as fit now. They were struggling to fill their charity places on this run and so I put myself forward and I have promised myself to do my absolute best to raise every single penny I can for them. This run is not about me, it is a platform, a means of a way of raising the profile for Star Throwers based in Wymondham, a charity providing support to those affected by Cancer. For me this run is about raising awareness for the chronic condition Lymphedema. I have been on a journey whereby I have felt down and depressed, lost and lonely and scared of the future and I have felt embarrassed to walk out in public. My journey is far from over. Some people are blessed in life. Others have had more difficult journeys. If you decide to donate, please donate for all of the people who have been affected by cancer and lymphedema. Please donate for Star Throwers who provide a kind warm sanctuary for the others out there going through their own long and difficult journey. I also want to help raise awareness about this condition and I would ask you to google the condition for education please. Thank you. [/p][p]Life is an inspiration. Kindness will see us all along the way. Be kind to one another. Enjoy yourselves out there. And listen to Baz Luhmann, he has some great advice! [/p][p][br][/p][p][br][/p][p][br][/p][p][br][/p][p][br][/p][p][br][/p]
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Supporters

31-Oct-2018

Anonymous

Hi JoJo, very proud of your achievement. You are a tough cookie that’s for sure. Lots of love Gaz, Gemma & Kam xxx

£20.00 plus £5.00 Gift Aid

16-Oct-2018

Jenny

Hi Jo your story has really touched me , I have known you for a while now and always found you to be bright and full of life , I never realised you have been unwell for some time . You have now found the support you need and I'm so happy for that .

£10.00

15-Oct-2018

Suzanne Eves

You’re an absolute diamond, inspirational and a very strong women. Well done x

£10.00 plus £2.50 Gift Aid

15-Oct-2018

Kirsty

Big love Joanna you’re made of tough stuff xx

£15.00 plus £3.75 Gift Aid

15-Oct-2018

Lorna

Well done jo you absolutely rock x much love Lorna xx

£10.00 plus £2.50 Gift Aid

14-Oct-2018

Ashley

Well done jo xx

13-Oct-2018

Paula Gundry Interiors

Joanna, I had no idea you’d struggled with this awful problem. You’re a brave woman & strong. Keep your head high during your run, we’ll all be thinking of you Xx

£30.00 plus £7.50 Gift Aid

13-Oct-2018

Miriam A

What a fantastic thing you are doing Jo, for a very good cause. Best of luck , Miriam x

£20.00 plus £5.00 Gift Aid

13-Oct-2018

Amy Loose

What an inspiration Jo! Good luck with the run and wishing you all the best xx

£10.00 plus £2.50 Gift Aid

13-Oct-2018

Philippa

I’m so sorry to hear of this condition. I’m humbled by your courage and strength. I hope to run with you again soon x

£30.00 plus £7.50 Gift Aid