195. Do I really want to hear the truth?

 Before anyone panics, I don’t mean about cancer recurring!

Thursday, I had my telephone consultation with Oncology. Much to my pleasure, it was Dr U, the young (well, relatively) Irish consultant who had dragged me through my chemotherapy so he was familiar with my history and I felt able to speak in free-flow. Poor man. I’d already talked with a Macmillan nurse and been slightly alarmed but I asked the same question and at last got an answer. There is no such thing as cancer aftercare specialists for adults. They exist for young people but not us. It falls to oncologists to follow things up and to GPs (not encouraging when you have a GP like mine who admitted she had no experience of cancer treatment side effects. Why didn’t I scream that it is her job; if she hasn’t the experience, then get it!). Dr U said there should be such a service - St James’s is the regional centre of excellence after all - but there isn’t :( 

So we were off to a bad start. Remember I was nurturing my UTI at the time and waiting for antibiotic magic to work so I was perhaps vulnerable. However, Dr U took me seriously and asked me to list my symptoms in order of severity. That was a long tale of woe and I confess I omitted to mention a few things like still being wide awake at 2am but I offloaded a lot and he is the first person apart from my therapist who has listened to the whole picture. Then he drew up an action plan with me and made sure I was returned to his list so we’d get continuity. Brilliant. Dr E has been very nice but I don’t know her from Adam. Dr D, with whom I completed my treatment and all the follow-ups is way too focused on results to bother with a holistic picture.

So where am I? 1. My MRI showed nothing problematic, nothing that would cause my lack of balance, misjudgments, muscle weakness etc. 2. Peripheral Neuropathy (which I may have permanently, it was always a risk but it’s still early days) DOES cause neuropathic pain (contradicting Dr E) so my weird pains have a possible cause. Example: I stood barefooted on the carpet and lifted my foot to dry it because I was sure I was standing in cold water spilt on the carpet. It didn’t matter that I knew the carpet was dry!! Confused messages to the brain. 3. Neurology may not be the best team to look at my balance etc as they tend to focus on specific disorders and take a long time to arrive at a different conclusion like chemotherapy after-effects. So here comes the humiliation 4. He wants to discuss my case with the Frailty Team. My mum went to that clinic when she kept having her falls!!! He did say they might not see me as I am far too young for their service but the insult had registered. Insult? To be honest, I guess I am a bit frail and I really would like to regain some of my upright stability. 

I now have to wait 4 weeks till he rings me again with a proposal or even a sorry, nothing doing. Meantime, I have registered with MySarah and I’m doing my hand exercises daily. I hope to return to the leg exercise tomorrow, now my bladder feels more secure, and go for a swim next Tuesday and just pray my GP was right last week when she said it was bad luck and not swimming that caused my UTI.

Fingers crossed that there is something out there to get me back on track. I feel something of an invalid right now. But I treated myself to a lovely bouquet to cheer myself up (and supported our local businesses): 

And I got invited by the Breast Cancer Now site to join their Community Champions as it’s been noted that the replies I write for others are “consistently kind and thoughtful.” What a lovely compliment. Sadly, I’ve had to say no for now as I think I need to get myself sorted out but maybe anther time.