Giles' story

"I think we’re so lucky to have this service in our area; I know I for one would have really struggled without it.”

Giles Healey (51), seen right with a Rennie Grove Hospice at Home nurse, was referred to Rennie Grove Hospice Care in September 2012 by his GP. He explains how nurses from the charity have been with him on the hardest journey he’s ever had to make…

“I first went to the Doctor because I had a bad back. I was referred to hospital for a scan and that’s when they found cancer: two tumours on my spine that had metastasised from the primary cancer in my thyroid.

“The first hospital I was under thought there was nothing that could be done for me; they pretty much sent me home to die. I remember being so shocked and angry – as much at the way they broke the news as at the news itself.

“Seeking a second opinion led to a very different outlook. I was referred for surgery at Stanmore at around the same time as I was referred to Rennie Grove. From the very first meeting with one of the charity’s nurses, I knew that whatever happened from hereon in – I wouldn’t have to face it alone – I would have support from specialists. Your biggest worry is what’s going to happen to your family if the worst happens to you? But Rennie Grove supports your family too – so you just feel like you’re no longer on your own on this confusing and scary journey.

“In my case, the Hospice at Home nurses helped me prepare mentally and physically for what was a pretty serious operation. It was a first for the surgeons at Stanmore: they’d operated before to remove one tumour and one vertebra – but in my case they needed to take out two vertebrae so as to be rid of the two tumours that had taken up residence there.

“It was touch and go whether I would survive that operation – and they acted just in time to stop the tumours spreading further. The operation left me disabled, but my daughter is an Occupational Therapist and so she helped me to find adaptations for the house and car that meant I could still be fairly independent. Rennie Grove is able to offer this service too to patients living in Hertfordshire, which I think makes a big difference to patients like me who are dealing with the after-effects of treatment.

“Although these tumours in my spine were effectively the secondary cancer, they were deemed more life-threatening than the primary in my thyroid. But post-op they turned their attention back to that original tumour. It was very reassuring to have the Rennie Grove nurses to turn to for advice about treatment, medication and pain relief at this stage.

“I had my thyroid removed but although my next scan was all clear for cancer from my waist down, some cancerous cells remained around my throat and ribs. The treatment for this was radioactive iodine: I had to starve my body of iodine (so no salt or any processed foods, including bread) for a week then be locked in a lead-lined room for four days while this radioactive tablet did its work. No-one could come in or out and even my hospital nurse had to communicate with me through a special two-way radio. It’s a pretty harrowing experience but it was great to have the Rennie Grove nurses on hand to talk to about what to expect. Other healthcare professionals help as much as they can, but you have a 10 minute slot with your GP, a 15 minute slot with your consultant – and then it’s not always easy to get hold of them when a question suddenly occurs to you in the small hours. With Rennie Grove, I could request a visit from, or simply have a phone conversation with, a specialist at any time of the day or night. And they could spend up to an hour with me each time so we had the chance to build a rapport that really put me at my ease.

“I’ve got to go back for more of the same treatment; this time a whole week locked in that room. But knowing that the Rennie Grove nurses are always on hand - and that they are liaising with all the healthcare professionals involved in my care - reassures me that nothing will be missed. I also have the chance to talk about the treatment with specialists in the field and really understand what’s going on. The charity’s nurses have a constant overview and I think that adds so much value – not just to the patient and their family but also to the GP.

“So now I’m in a position where I’m still fighting cancer - and I’m disabled because of it. I have to walk with a stick and can’t bend forward. If I drop anything I have to use a grab stick to pick it up. But if I think back to what might have been – the initial prognosis was a terminal one and even the spinal surgeons thought I would need to use a wheelchair after the op - I’ve done well physically. Mentally it’s hard: I worked in financial services for most of my career, volunteered with adults with learning disabilities and spent a lot of my spare time hot air ballooning. I can’t do any of these things now and no-one will employ me.

“I’m still on a regular schedule of treatments: radioactive iodine, scans, physio, etc. It’s so nice that Rennie Grove’s support didn’t stop after that first operation and that their nurses can work around my treatment schedule so I can feel confident that it all fits together as it should. I think we’re so lucky to have this service in our area; I know I for one would have really struggled without it.”

October 2013