Our names are Liz and Jo Terry and we are sisters. We are both in our 40s. Liz now lives in Gloucestershire with her wife Dee and Jo still lives in Brighton and Hove where we spent most of our childhood. We are very close. Together with our younger brother Ed we support each other through everything.
Thank you for raising such a huge amount of money for CES! £750!!! Wow!
When did you first hear about Cauda Equina Syndrome?
Jo – I first heard about Cauda Equina Syndrome when I was in hospital, I was googling my symptoms to see what I could find out. I then asked my surgeon “Do I have Cauda Equina Syndrome?” and he said “Yes”. I knew a fair amount about Cauda Equina as I had already had it twice before this.
Liz – When Jo was first diagnosed with it! The whole thing was a total shock and a learning curve for the whole family, not least Jo. She walked into A&E and came out six weeks later unable to walk, doubly incontinent with complete saddle numbness and with excruciating nerve pain.
As well as the huge impact CES has had on Jo’s life sometimes carers and loved ones are overlooked. How has your life changed since Jo got CES?
Liz – It’s been very hard to watch her go through all this and not be able to really help. Being so far away from her is very frustrating! She recently had an ileostomy and I’m so glad that I was able to be with her for three weeks and really help her with the emotional and physical impact of another big life change. I am immensely proud of her for how she has coped and is coping with this condition and with how much her life has changed. She is our family’s heroine.
Jo- Aww shucks
How did CES impact your relationship as sisters?
Liz- It did affect our relationship at the beginning. I couldn’t handle the enormity of what had happened to her and I retreated a bit for a while. We soon sorted things out and are now closer than ever, I think.
Jo – I was hurt initially that Liz wasn’t there for me in the way I am used to in our relationship, but we talked it through and it’s all fine now. Having her here to help after the stoma surgery meant a lot to me and it definitely helped me a lot.
What has been your experience of support and information given to patients and families following a CES diagnosis from the NHS? If you were creating services for patients what would be at the top of your list?
Liz – This is one for Jo to answer I think
Jo – My experience has not been great. Everything I have learnt about CES I have learnt on my own. Once the surgeon told me it was Cauda Equina Syndrome there was no explanation of what that actually meant. They gave me information about individual parts of the condition so for example leaflets from the Spinal Injuries Association about the continence issues etc. I had some good physio and occupational therapy support while I was in hospital but not a great deal once I was home.
Top of my list would be better bladder and bowel services. I ended up having to teach myself how to self catheterise and the whole time I was in hospital I didn’t see anyone from bladder and bowel to explain anything to me. It has been a huge learning curve with very little support and some of the care I received whilst in hospital, inparticular with my bowel, was not good and at times, damaging.
With the benefit of hindsight, what would have made it easier to cope with the new situation you both found yourselves in?
Jo – Better information! Being told that I had CES and then having it explained would have helped! I’m not really sure what else would have made it easier to be honest.
Has CES brought anything positive to your lives?
Liz – Apart from making us a bit closer, absolutely not. It’s been hell on earth for Jo, and horrible for the rest of us to watch.
Jo – Hmmm…. that is a really tough one. It has been and still is extremely hard. It massively impacts my life and independence. However, it has clarified for me who in my life I can really count on. Along with Liz and our brother Ed, who has also been brilliant, my best friend of over twenty years has been an absolute rock and I couldn’t have got through it without her.
A key piece of advice for anyone affected by CES?
Jo – I guess I would say to be patient with your body, it will take time for the function to come back if it is going to and pushing yourself too fast may actually slow that healing down. Be your own best advocate. You know your body better than anyone else and unfortunately you will probably have to fight for the support that you need.
Allow yourself time and space to grieve for what you have lost. I am two years on and I am still struggling to attach to the feelings that I have surrounding everything that has happened. The psychological side of your recovery is important too.
Hang in there! There is support out there. Talk to others that have CES, be aware that everyone is different and your CES and the damage it has caused is not going to be the same as someone else, so try not to compare!
Thank you for sharing your story, it’s really touching to hear how you have been there for each other. Two things really stand out to me that you have mentioned Jo,
“Be your own best advocate… you will probably have to fight for the support that you need” – unfortunately this is still true for CES patients everywhere. Awareness of the red flags has done little to bring about improvement in care pathways.
“Be aware your CES damage is not going to be the same as someone else, try not to compare!” – I agree Jo, CES brings a whole spectrum of issues in varying degrees and everyone’s injuries and recovery after are different. That’s great advice!
Once again, a massive Thank you for your fundraising and this story fits in nicely with our News that we now have charity status for our new charity “Cauda Equina Champions Charity “ – you have set a high benchmark !
Many thanks and lots of love x
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