Finding a way through words

I’m a people person. I remember my daughter once saying in a supermarket, “Mum’s made a new friend!” after I’d spent the past ten minutes talking to the lady in front of me in the queue. At the end of the ten minutes I’d discovered where she was from and how many children and grandchildren she had. It was only the fact that we were at the front of the queue that stopped us sharing photos of our families! I’ve always liked to talk, probably too much. I know that my Dad would often tell me I was babbling when I was a child. The point is, I think I’ve always known that words are important, that even the shortest friendly interaction can make a difference to a day. By far the most difficult part of this pandemic for me has been the loss of those social interactions, however innocuous, which are able to lift my mood so greatly. I’m also a hugger so I’ve missed that too. As a recent post on facebook suggested, “Spare a thought for the huggers out there, we’re not OK!” Now I’m aware that for some people reading this, both of those things are not part of their make-up. I know several people for whom the pandemic has provided a welcome opportunity not to have to react in social situations or meet people. For all of us, however, words are still important. What we say and how we say it can have a profound impact on the person we’re speaking to, just as how we listen can have an effect on someone who is speaking.

When I managed a local foodbank, there were several occasions when I was aware of the importance of the conversations I had with the service users. Many times they came in with huge social and economic problems and the weight of the world showing in their faces and body language. There were practicalities to attend to, such as which agencies to refer them to for future help, as well as their food bags to prepare, but by far the most important thing was the few minutes spent chatting over a hot drink and a biscuit. Many of them had been dealing with the job centre, housing departments, doctors, social workers and more. They were tired of “official” conversations and often just wanted to flop on the sofa, talk or sit quietly, with a bit of human company. Sometimes they wanted to tell their story, other times not. Sometimes they wanted a hug and I would regularly be heartbroken to discover that they couldn’t remember the last time it had happened. Occasionally we offered to pray and many times they were grateful for that. I remember regularly praying for some light in their darkness, some small bit of encouragement in their day. There were not always answers. I’ve always been the kind of person who wants everyone to be OK, so it was a real lesson for me to learn that I couldn’t always make things better. Many people who came to foodbank would go back to the same really difficult life circumstances they had arrived with, but I honestly believe that a listening ear and some kind words helped. As a talker I have to consciously choose to listen and not always try to offer solutions, as often there aren’t any.  I think that’s also true for those of us with chronic illness. I don’t want to hear “it’ll all be OK” or “keep your chin up”, I want people to walk with me through this experience and listen when I need to talk or rant or cry, as well as share my joys and achievements. Thankfully I have some of those people, who provide me with a safe place to be myself, warts and all. Truly listening, with good eye contact, just being there is often the best we can offer. When we do that, we are not only saying your words matter, but your thoughts and feelings matter. You matter.

Reaching out to other people during this pandemic has become really important to me. I started to realise that when I was feeling low after another day sorting the house, or planning yet again what to cook for dinner, it was usually because I hadn’t reached out to any of my friends or loved ones. I’m blessed with a great marriage relationship, so I’m lucky to have not had to endure lockdown alone, but I missed banter with my kids and my friends. A quick text/phone call/video chat invariably changed my mood. I started to “check in” on various friends who I knew were in really challenging situations. I have a friend who is a lead nurse in an intensive care unit dealing with covid patients. One day she popped into my head and I knew I had to message her. As a Christian I’ve learnt not to ignore those promptings. She came straight back saying my timing was perfect as the team were really struggling with practicalities but also suffering from really low morale. I was able to assure her that I was thinking of them and praying for strength for the whole team. I’ve been in contact with and praying for several friends who caught covid and were at a really low ebb, again checking in daily to see if they were improving. I have friends who are struggling with elderly parents, some of whom have sadly passed away during the pandemic, often meaning they aren’t able to spend the time they would like with them in their last days. Having been through the loss of parents, I really wanted to reach out to them, to be with them even though I wasn’t there in person. My point is that these interactions were a blessing to me as much as I hope they were in some small way helping them. Words matter.

Looking back through my journal at my notes from consultations, I’m struck by the variation in how I felt, depending on what was said and whether I felt listened to. Before I was diagnosed, my only contact with a consultant had been at the birth of my first daughter, when a consultant entered my labour room with a pipe in his mouth and a jacket over his shoulder, told the midwife to get the forceps trolley ready, then left! Thankfully I delivered naturally before it was necessary for him to intervene again! Those of us on “Watch and Wait” with regular consultations will recognise the build-up anxiety I feel leading up to each appointment. Even if we don’t feel like much has changed, there is always the possibility that our cancer has progressed and we will need treatment. I was extremely nervous before my first consultation following almost a year under the care of the GP. Thankfully it was a positive appointment, if a little boggling with all the information I received. I had blood sent off for formal diagnosis and was able to meet a lovely Clinical Nurse Specialist, who proved to be an invaluable contact and support during my time under the care of that department. I met several consultants, who ranged from rushed and a bit dismissive with not much eye contact, through slightly eccentric but really knowledgeable, to a lead consultant who looked genuinely interested in my answer when he asked how I was feeling. I’m really aware how stretched all departments are and that the consultants had probably heard the same story of swollen lymph nodes, night sweats and fatigue many times, but for me this was the first time. I came away from the lead consultant feeling acknowledged, listened to and reassured. He had listened, answered my worries and armed me with information I needed.

Following formal diagnosis, my next consultation was a month later with another clinical nurse specialist, who informed me that she dealt with the “easy” cases. Having built myself up to meet with the consultant, I felt a little disappointed. It wasn’t that I wanted to be a “difficult” case, but I wanted my new diagnosis to be acknowledged as a challenging one somehow. I truly believe that the CNS was trying to be reassuring during the consultation, but what actually happened was that I felt dismissed. My fatigue was probably psychological, I still had an immune system so not to worry about that, my bruising was probably thin skin due to age (I was 56!), swollen lymph nodes won’t ever hurt (?!) etc. In the end I think I nodded, smiled and left. As I walked through the reception area of the clinic I noticed a Macmillan corner and went in to collect some more booklets. There I met a lovely lady who could see I was a bit upset. I sat with her for ten minutes, talked and cried a bit, had a hug and I left feeling so much better. She even booked me onto a “Look Good Feel Better” pampering session for cancer patients, which was a real treat. Her words and her listening ear mattered.

So as I get used to a new hospital department, I’m so grateful to have moved to an area with an excellent reputation for CLL care. My first consultation last November was really positive and everyone I met was caring and attentive. The consultant took time to explain things. Phone calls to my lovely Clinical Nurse Specialists have been so encouraging, particularly as I might be approaching treatment time in the not too distant future. I have a video consultation next week, so let’s see.

There’s a biblical proverb which says, “Kind words are like honey – sweet to the soul and healthy for the body”. Kindness is a whole other subject for another blog, but words which are “sweet to the soul and healthy for the body”? Yes please!