What it means to be deaf with bowel cancer
Friday 27 March 2020
Claire Adshead, 46 from Hemel Hempstead, was born deaf and diagnosed with stage 3 bowel cancer in May 2019. She shares with us how this impacted her diagnosis and treatment.
“Do you need a British Sign Language interpreter at your colonoscopy appointment?” The NHS texted me this on my phone. My GP is aware that I have a profound hearing loss since birth, I wear one cochlear implant and one hearing aid. I was at the very first stages of my bowel cancer journey when I got this message.
I had to have a colonoscopy and was unsure about the communication aspect, I can lip-read very well and am able to talk well. The idea of a BSL (British Sign Language) interpreter is to facilitate communication and to ensure that everything is understood. I was a little self-conscious that a camera would be going up my backside and having an interpreter in the examination room was a little off-putting so I opted out from having an interpreter.
The colonoscopy staff at the suite were so accommodating that I had no communication concerns. The nurses had obviously taken some deaf awareness training, as they asked how I wished to communicate with them. I had gas and air, which enabled me to be alert and see how the colonoscopy works. The suite was dimly lit and the camera screen was the main source of light in the room, but it was bright enough for me to lip-read and understand the nurses and the specialists. They used a mixture of talking and gesticulating, such as move over to your side etc. I had no concerns there.
I was told the news verbally by the consultant that I had bowel cancer that same day, I found he was easy to lip-read and understand. He asked if I wanted a BSL interpreter for appointments with the surgeon. I asked if he knew the surgeon and he did, and if he was easy to understand. He said that the surgeon is deaf-aware, the nurse who was also there knows the surgeon and agreed with the consultant. At that point, I declined the offer of a BSL interpreter and this carried on throughout my cancer treatment and I attended all my appointments on my own.
But I did enquire as to how quickly they could get one at short notice, mind you the demand for BSL interpreters outstrips supply. The appointment booking office replied that they could get one within days, as opposed to getting one within hours (as it is for other spoken foreign languages usually over the phone). Under ideal circumstances the BSL interpreter would be there at the appointment with you as the deaf person would need to read the BSL interpreter as there is more to it than using your hands to sign, there’s the face and body language to interpret what is being said.
I met the surgeon, sure enough he was really easy to understand and ensured that I understood what was being explained. From the type of surgery right up to the day of the operation he repeated the type of operation that I was to have. At this stage, I was introduced to my Macmillan nurse who was aware of my deafness and we discussed the best way of keeping in touch. We both settled for emails and texting on smartphones. Phone calls would not be made at all. And this has been true and so helpful right through my journey, the Macmillan nurse kept in touch regularly right up to the post treatment stage.
In the weeks leading up to the operation, I had to have pre-op checks, this was a little bit of a minefield to be honest. As I had to see four different people – healthcare assistant, anaesthesiologist, pharmacist and the enhanced recovery nurse.
I found the anaesthesiologist and the pharmacist difficult to understand - it seemed that they had little deaf awareness. Luckily I came prepared, I typed up my list of medications, allergies and number of operations I’ve had to date. They were impressed that I came prepared with this sheet – good tip for you, keep a copy of your health history, it helps them to do the job so much better – so I was told by the anaesthesiologist.
The enhanced recovery nurse, bless her heart said that I was the first deaf patient to come in without a BSL interpreter, friend or family member. She found quickly enough that I was perfectly capable of understanding her and the session went really well. The role of the enhanced recovery nurse is to enable the patient, literally the day after the operation, to get up and moving about as soon as possible.
On the day of the operation, some of the operating theatre staff were ok and others weren’t. I was seen by my surgeon who re-explained the operation and I signed off my consent. Then I saw the anaesthesiologist – I had a little trouble with his accent but he was good at checking to see if I understood him. Having had a few operations before, I understood it all and again signed off my consent.
Two theatre nurses who accompanied me to the operating theatre checked to see if I was ok and made sure that I was looking at their faces so I could lip-read, as at this point I did not have my cochlear implant or my hearing aids on. The anaesthesiologist explained how he was going to do the spinal epidural with me looking at him, once I understood, he then proceeded by going round to my spine. One of the nurses stepped into the space where I could see her, she explained what the anaesthesiologist was doing by lip-reading her. This really helped enormously and helped with the anxiety anyone would have in the pre-op theatre room. That was done and then they proceeded to give me anaesthetic through my hand and I was out for the count.
The ward nurses were made aware of my deafness and my name board above my bed had the words ‘deaf’ written on it. All the ward nurses that I came across were very accommodating and they ensured that I could lip-read them. One or two resorted to writing down after I asked if they could write it down as I do find a small minority a real challenge to lip-read. Those five days in hospital had been really smooth and my recovery was really good so they were happy to discharge me. The nurses explained the medication that I was to take at home, no issues there.
I returned to hospital for the histology results. It was originally thought that I had stage 2 bowel cancer, it was actually stage 3, as the cancer spread to the nearby lymph nodes. This meant that I had to have chemotherapy. I was asked again if I needed a BSL interpreter for the oncology part of my treatment, again I declined. I met the oncologist, luckily my Macmillan nurse was also there at my appointment. The oncologist was easy to lip-read but he mumbled quite a bit, I asked him to repeat - which he did. The Macmillan nurse checked with me after the appointment to re-run through what was discussed with the oncologist so that I had all the facts. I really appreciated this.
I met one of the chemotherapy nurses at the introduction to chemotherapy session. At this stage I decided to ask for a one-to-one session for this and for a BSL interpreter. The introduction session lasted two to three hours and I was really glad for the interpreter in this instance. If I didn’t, I definitely would have missed out on quite a bit of essential information. Lip-reading is an energy intensive ability and it really drains your energies just by concentrating and filling the gaps of what was being said.
I had my sessions of chemotherapy in the suite, the nurses there were telling me that I’m the first profoundly deaf patient they had in there. This really made me wonder and I did ask, surely I can’t be the only one. But one of the nurses told me that it’s a rare sight to see someone with my type of cancer at stage 3 and having treatment. This was further confirmed by another nurse, they explained that most deaf patients with bowel cancer tend to be stage 4 and most opted not to have chemotherapy, maybe purely from a lack of understanding or just simply being frightened.
I did put some feelers out in the deaf community, and I was aghast to hear that bowel cancer and the symptoms were not well known. Communication with the GP was the main issue that prevented them from accessing quality health care. And I learnt that those diagnosed with the disease were in the latter stages and have since passed away.
Since completing my chemotherapy I’ve got no more cancer in my body. I am now under surveillance for the next five years. This shows that a deaf person having had bowel cancer can have successful treatment. More awareness of the disease needs to be put out there in BSL for the deaf community and to dispel any myths or concerns. After all, ‘we all have bums’ as Dame Julie Walters so eloquently put it.
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