I’m often told that people are exhausted just listening to all the things that I manage to squeeze in to a day. The truth is, sometimes so am I! But if the past few years have taught me something, it’s to make the most of life’s time, to not let an opportunity pass you by and to embrace all that life throws at you – good and bad!
Today was a perfect example. My day started with a physio appointment. Not that unusual you may think but it was actually a silent customer assignment and I was there to assess their services, constructively criticise where I, as a customer, felt that there could be improvement and also to praise staff, settings that deserve a mention. In the bargain, I receive physio for free. As you know from previous postings, physio is something that I have done recently anyway to release the problems in my calves, shins and ankles. I have to say I was impressed by the very thorough service I received and will be going back (and paying for it!).
A quick dash home and change so that I can then get to St Helier hospital. First to meet up for coffee with the mother of a young girl diagnosed with phyllodes and then for my consultant follow up appointment with the gastro team.
It struck me once again that as a mother of a child/young person diagnosed with a cancer, this lady has an enormous burden. On the one hand you want to assure your child that they’ve received the best possible treatment and surgery and that there is very little, err no chance of recurrence. On the other, you’re asking questions, reading articles and trying to learn ‘what next?’, ‘what if?’, ‘have I done all that I can to protect my child?’, ‘is there anyone who can help me understand?’. There’s also the issue of talking to your child. What sort of a conversation do you have? How do you begin? Are they also seeking answers and having concerns and not showing you to protect you?
I don’t have the answers however I do know that to talk about it is probably the only way forward. Both parties need to understand each other’s concerns. Both parties need to understand that the other one is hurting or to share information that you’ve found. That said, the ‘conversation’ mustn’t fuel worry but simply to share concerns.
This morning I felt the hurt of a mother unsure of the direction to take and unsure that she had done enough. She has and she continues to do so. Having met both her and her husband, I was in awe of the closeness of their family and overwhelming love.
Sadly, just a quick coffee and catchup…. but I promise you we had a laugh too!
Then off to see the delightful consultant. Some of you may have heard me refer to this hospital as ‘The Mortuary’ and I wanted to show you a little bit of why… so here’s two pictures.
This is a ‘good’ photo of the hospital now. Go on, tell me what you think it looks like? Errr inviting, huh?
1960s aerial shot of St Helier Hospital. Not sure it’s changed since then but this shot reminds me of a prison H block!
Anyway, I digress. My appointment.
No surprise when I tell you that the waiting room was full. It was hot, stuffy and had no air conditioning working and ‘apparently’ we weren’t allowed to open the doors. It was after all 30* outside and you never know what bugs we may bring in! (or cultivate in the packed waiting room). I loitered and lent against a wall waiting for one of the hot plastic covered chairs to become free for me to sit and wait. It was quite a while and I did wonder if the only way we’d get a seat would be when one of the patients passed away!
I thought I may wander round the ‘Cancer Information Centre’ to see what charities and organisations had to offer. Perhaps I could promote an event or a charity via Living Beyond Diagnosis’ social networking. However… dah dah dah… the Information Centre had a notice on the door saying that it’s not until next week. Hmmm in all the appointments I’ve had at St Helier, it’s never been open… what do they think we’re going to do? Steal a leaflet? I might sound flippant about this but actually it really upsets me. A resource that is so vital to people diagnosed or their friends or family supporting them to find information isn’t ‘open’???
Eventually the mischief took over and I had to tweet saying that the hot waiting room was full and way behind time as usual. (St Helier Hospital follow me on twitter!). Sure enough I was called within the next 5 minutes to see the consultant. Hmmm the power of social networking or my turn? I’ll leave you to decide.
Right… I shall describe my encounter and leave you to make your own mind up about if this is how any patient should be treated.
I opened the door to see a young consultant slumped back in his chair, arms resting on each respective arm rest and a big grin on his face. I said my name and hello. He remained slumped in his chair and eventually, after a long intake of breath (whilst I sat down), he sat up, reached for my file and congratulated me on ‘selecting all available scans and tests from ‘our’ menu’. He then grinned some more and relaxed back into his chair to await my reply.
I was just a little aghast at his attitude and managed to bite my tongue and not remind him that it took them 7 months for an urgent referral for an endoscopy to be carried out. For the symptoms to only have stopped with antibiotics from my GP. For his sanctimonious attitude.
I then informed him (I wasn’t going to bother waiting for questions that probably wouldn’t come) that the antibiotics received from my GP had held the symptoms (reflux, blood, nausea) at bay whilst I was taking them, but 2 days after I finished the course, the symptoms (not the blood) were back. His suggestion (genius) to discharge me and should the symptoms come back to see my GP for further courses of antibiotics.
I did something that I would never advise anyone else to do… leave and not look back. I’ve lost the will to fight. I know I can get more antibiotics from the GP (which I’m in the course of doing) and will rely on these to ‘fix’ the symptoms. I don’t however intend to return to The Mortuary ever again.