Disclaimer – This is Emma’s real story and contains discussions of sensitive topics.
John and Emma have collected the various resources which they found to be useful through what is discussed below, you can find them here.
chapter one
John is the most capable man I have ever met – anything he sets his mind to, he can do and excel at. This still stands true to this very day and especially after everything he’s been through and is still going through.
I can’t remember the date exactly, but I remember I was waiting for him after a comedy show to come back from the toilet and thought this shouldn’t be taking so long – he needs to see a doctor. So as usual with men he eventually went in with a full list of ailments. That poor doctor. We weren’t concerned – thought maybe he’s got an enlarged prostate but when we got the letter for him to see a consultant after the biopsy, I sort of figured it was something more. I googled whose clinic John was going to and it was the top urology doctor at Harrogate Hospital, so I sort of had an idea that the diagnosis was not good. We had to wait over Christmas for the appointment. Happy 2023!
I remember the consultant saying cancer but its all okay and treatable with a range of options for treatment. I remember saying to them that I catastrophise things so this was great news! So much going on that day but I met the Macmillan Nurses who became my lifeline over the next few months of absolute hell.
Getting the letter to say the diagnosis had changed after the initial diagnosis was heartbreaking and then more scans and bone scans. I remember breaking down to my boss on a zoom call about the bone scans. I was in peak anxiety mode.
Ali at Macmillan Nurses was the person I talked to and offloaded to. She has been an amazing support over that absolutely awful time and would listen and calm me down. We had zero communication regarding dates for treatment – oh it should happen within so many weeks but in reality we are talking months. She would chase appointments and keep us informed of what was going on. The wait from January to May to get any treatment for aggressive prostate cancer was the worst time of my life.
chapter two
It’s awful to say you are happy for your husband to have an operation – but I was thinking finally he is having treatment – we can move on from the limbo state we are in. You know you have cancer, but they are doing nothing to stop it growing. Its there and still growing. Why are they dragging their heels with this? Then its cancelled. Again, peak anxiety mode – waiting again for a new date, phoning the department and getting told oh well you’ll have it soon. I was shocked that the communication was so bad.
So finally, he has the operation. I was pleased he seemed to recover well but then the catheter was removed, and all hell broke loose. I have never seen my husband in so much pain before. I hate A&E, and we waited hours – it’s a urinary infection – I remember screaming at them it’s not a urinary infection please help him when he came back from the scan screaming in pain. I felt so helpless again. He coped so well with the catheter – fashioning shorts and ways of being able to wear it out – as practical as ever. We thought his leak would never heal – so many cystograms and painful procedures he had to endure but he battled them with the usual determination over 2 months.
Harrogate Hospital Urology Department are amazing. Their treatment of my husband has been amazing and again Ali at Macmillan Nurses assisted with following up treatment schedules – removal of catheters and cystograms.
chapter three
I sort of knew the cancer was still there when he had a consult with a urology doctor at Harrogate during his recovery from the leak. John mentioned his PSA was rising again. His eyebrows raised and my stomach sank.
I am still angry that it took weeks to get the results of the prostatectomy from Jimmys. Of what they found and how much they had removed in the operation. They could have saved him so much suffering after the catheter removal after the op by leaving him to heal longer. He suffered for 2 months for no reason. My anger has dissipated somewhat but its still there if I think back to those months.
I remember being happy that the cancer was only in three tiny spots – how naïve was I. But at least it hadn’t moved into the bones. I didn’t realise how brutal the hormone therapy/radiotherapy would be. How it would zap him of all his strength. As with all things, John went into radiotherapy with a positive and no bother attitude. It wasn’t until a few months after when the combined wave of hormone therapy/radiotherapy hit him with fatigue.
Fatigue has been difficult to cope with but we have strategies in place now to assist – disabled driving pass, access card and planning our day. He’s had to accept this is how it is now but it has been a long process.
chapter four
That realisation that he couldn’t work again was very difficult for him but with the support of the school and his union he got through it. We are still adapting to the major changes we’ve gone through.
In terms of support – going to Maggie’s and having couples therapy was invaluable. Andrew made us talk about difficult subjects. He helped us put practical things in place such as getting wills sorted and organising our Powers of Attorney. This helped me to feel I had some control over something. I also started to declutter like a manic. I still need to.
I think I was in “my husband’s going to die” mode for such a long time before he got his treatment. I was almost on the verge of a nervous breakdown, I would cry in the shower so not to show it and at every sad song.
As soon as we moved into the care of the oncology department at Jimmys I felt we were looked after and listened to. The consultants and nurses are amazing and are always available to answer any queries. Hannah and Sally the specialist nurses are brilliant.
Having met so many positive people who have gone through so many different treatments and therapies and who are still here, I am more positive than I was before when I had no experience of what was going on. I find it easier to talk to strangers and to those who are going through the same experience. Their support and the ability to talk to the wives whilst walking dogs has been the best thing to come out of this and I feel we have made some amazing friends. My emotional support doggos – Lola and Otis.
Setting up a peer support group is daunting but needed. I think about those men who don’t have a partner to offload to or anyone else to share their problems and feelings with. If we can help anyone going through this with our support and friendship, then it’s worth it.
The Dodgy Walnut 