Very Happy Bunny 🐰

[briarsw]

I had my appointment at the Late Side Effects clinic on Tuesday 19th December. I met the senior radiographer an oncologist and a nurse all of whom were very helpful and kind. They had all my notes dating back from my cancer treatment in 2015 to date including all the hospitals and consultants I’ve seen. They let me talk and ask questions without interruption and I was heard. At last.

They have given me an action plan and given me lots of valuable advice and helpful information. I have to have a raft of tests relating to my bowel but I understand why and what they are looking for. The bladder treatment they will leave to my urologist as I am getting treatment and awaiting a CT scan. However they have recommended I start taking Hiprex which will keep my bladder clean and sterile. That together with the Aluril bladder washes and the intermittent self catheterisation should stave off the UTIs’. Fingers crossed 🤞

They are going to be testing my poo and I will have 2 nuclear PET scans a week apart to check the function of my bowel.

Essentially the bowel and bladder have been damaged by the radiotherapy I had and that has also affected my whole pelvic area.

Their diagnosis is I do have Pelvic Radiotherapy Disease or to all of us PRD.

They listened and made me feel human not just another number. I feel truly blessed. I was very emotional when I came out of the appointment and the nurse actually hugged me. I am so relieved to have been given an action plan and to have a diagnosis. They have advised that as more people survive cancer there should be more of these clinics opening around the UK. So my advice is if you don’t have anything local to you keep on talking (shouting even) and you will be heard. It may just take some time and not be as immediate as perhaps you would like. You can point them towards the charity website and this forum. It is real and we are all struggling but if we keep on talking it will happen. I think the hope is that for the future radiotherapy may be able to be more tailored to the individual needs of the patient so that they can try and minimise the long term side effects.

I hope this helps you all to have faith and gives you the courage to talk with your health advisor.

Wishing you all a very Merry Christmas and Happy New Year and I hope you are all able to enjoy this special time with your loved ones 🎄🇨🇽🎅🏻💝🌞

[Julia-25]

I’m so pleased for you,this is fantastic news and also a really positive post which will surely give hope to others. Merry Christmas 🎄

[D_Cymro]

I’m so glad to hear that you’ve been listened to and a way forward has been worked out.

I started experiencing a wide range of admittedly much less serious symptoms than you about 2-3 years ago and am delighted to be able to be involved in giving ‘patient advice’ to the wonderful team (NHS and MacMillan) who are setting up a new LES based in Oxfordshire.

[Hopeful-one]

I'm really pleased to hear you are getting such good support now Briarsw. It is interesting that you say there was a radiographer AND an oncologist AND a nurse there. Brilliant! One problem with the established late effects teams that I'm gleaning from my own experience and from what I'm learning from reading of the experience of others, is that they seem to vary enormously in terms of how they are set up, and who heads them, and what they offer. Some, by the sounds of it like the one you have, seem to have more specialist staff involved, others not. The one I have experience of does not have a doctor, and they do not look holistically at the whole picture unless really pushed to do so, and even then they struggle with it, which leaves me frustrated, and worried that they may miss things. As you say though, there is certainly a will to improve post treatment related symptoms for people, and they will get there-eventually!!

[Stilllooking]

OMG that is truly amazing and I wish you well Santa has come early xx