When the drug trial finished and Steve had recovered for the side effects of chemo, the priority was to get out and about visiting family and friends, enjoying new experiences and seeing a bit more of the world - those places you always plan to visit but never quite get round to organising the trip...And that's more or less how things have carried on for the last four years, making the most of the here and now!
However, our neglect of maintenance has taken its toll on the house and garden to the point we felt we needed to take action. And that's what we've been doing these last few weeks - clearing the spare bedroom; dismantling the old play/sleep platform; cleaning; plastering (not us - a job for Ian the plasterer); prepping woodwork and priming bare plaster; painting, painting, and more painting - ceiling, walls, window, skirting boards, fire place surround....
Today, the door was taken down and trimmed ready for the carpet fitters on Monday. Some larger items of new furniture are on order and will be delivered the week after. The spare room transformation is underway and progressing well, so our next staying guests should be enjoying the results in a few weeks time.
All this activity has meant that we have been too busy by day and too tired by night to dwell on Steve's assessment on Thursday. So much so, that we had forgotten that Steve has not received a "pink slip". This is not as you might imagine, an item of underwear! It's a sheet of pink paper the consultant gives to the patient at one assessment which is taken by the patient to radiology at the follow up assessment so that the doctor has an X-ray to look at and compare to previous X rays before the subsequent consultation and physical examination.
Most meso warriors seem to have a scan every three months or so to monitor their cancer. Our local hospital seems to be one of the few which relies on X-rays to inform the quarterly assessment. Scans are only used to follow up any signs of disease progression. When questioned why, one doctor said it was because scans expose the patient to 20 times the amount of radiation compared to an X-ray.
However, the last registrar we saw back in June asked about Steve's scan regime and seemed surprised when we told him it was usual to have an X-ray, rather than a scan. He said he would follow this up with the consultant. As a result, Steve was not given the pink slip to take away, ready to bring back to the hospital for an X-ray prior to the next assessment in September.
The follow up letter to the GP (copied to us) said "this gentleman remains very well in himself and has recovered from the toxicities following his chemotherapy. We plan to see him in three months time with a repeat chest X ray beforehand, but should he become symptomatic we can organise a CT scan."
At that point, we contacted the hospital to ask to be sent a "pink slip" to take to radiology at the September assessment. We waited so long for the pink slip to arrive, we eventually forget about it until a few days ago. Another phone call, another explanation, and still nothing in the post even though the assessment is on Thursday. If nothing arrives tomorrow, then it will be another round of phone calls to make sure radiology is expecting Steve on Thursday morning and will do his X ray in time for the doctor to have a good look at it before the appointment.
It beats me why a modern cancer centre which only opened in 2009 has such an archaic system. Why does a doctor in the day clinic have to give a patient a bit of paper to take to the radiology department just down to the corridor when the X-ray is already booked in electronically (or I assume it is - they seem to be expecting Steve when he arrives). He still has to go through all the security checks to confirm he is who he claims to be...It just seems to be an unnecessary extra step for the patient who has to keep the form safe for 3 months and then remember where it was put for safe keeping, not to mention all the trees that went into making the pad of pink paper....
Rant over. I thought I was dealing well with the stress of the approaching assessment, but may be not as well as I thought! However, getting stuck into a DIY project does seem to take the mind off things, as well as being productive on the home front. If we did a project for a couple of weeks before every one of Steve's assessments, that would be a great way to get the house and garden in good condition and combat "scanxiety"!
We are not the only ones waiting for results around now. Amanda and Ray will hear about his scan results on Friday. Steve in Australia will get his on 12 September. Fingers crossed for all of you. Big hugs and positive thoughts to Lou in Australia who is having more chemo this week, and to Mavis in Kent who is determined to finish her current regime of fourth line chemo. Sending much love to you both. And a very big hug to Jan and Gary who had to cut short their holiday cruise as Jan is not well enough to continue. She needs and deserves a break. Here's hoping so much that things work out for you, Jan x.
Next post will be the results of Steve's X ray and assessment - always assuming that the saga of the missing pink slip does not put a spanner in the works on Thursday....