It has been a few weeks since we updated you on our progress or perhaps I should say lack off when it comes to Stewart.
First of all the planned removal of his filter was cancelled as we arrived at the hospital and we are now awaiting a new appointment but do have an appointment this week at Thrombosis clinic.
I have explained to all the drs numerous times to contact me when it comes to test results or appointments as Stewarts short term memory is currently hampered. However they seem to forget every time and bombard him with information that he either doesn't retain or doesn't fully understand, in all honesty though the Drs don't see to understand either.
Two weeks ago, Stewart received a phone call from the GP telling him his latest scan looked good and he was so relieved when I got home, saying finally we had some good news. the following day the hospital consultant rang saying that there was something on the scan and that another urgent brain scan was needed, he mentioned many things including brain surgery which Stewart was unable to remember so to say we were confused was an understatement, this also plummeted our mood.
I rang the GP to get some clarification, get some better pain relief and again to ask them to phone me. Several days later we were informed we would be getting a call but no time was given although they wanted me present. This was for the same day as the new scan and so after we had been to the hospital, I took the phone with me. Typically, the Drs rang once whilst I was driving and I couldn't pick up. they didn't call again but the next day Stewart received a call from the secretary informing him that he had been put back two weeks because I hadn't taken the call! I appreciate they are busy but this made my blood boil!
The drs now have a system where you have to send a request online so I left Stewart to fill that in and a call was returned an hour later and appointment made.
Well even the GP was confused and after reading everything could understand why we were upset but he was able to read us the letter from the consultant referring Stewart to the Neurosurgeon at Derriford. They currently believe that he may have a cavernoma, which is abnormal cells, resembling a raspberry which could have been the cause of the original seizure, Previously they had wanted to stop the anti seizure medication but this has now been overturned. It may be that brain surgery may be the only option. The movement and pain in his arms is still major issue and he requires help with personal care. The GP has increased his pain relief which is helping at night so we are getting a little more sleep. Arrangements are also being made for a scan of his shoulders to rule out any muscle damage, previous x-rays showed no breaks or dislocations.
Now those of you that know him well know how head strong he is so it's not all been plain sailing as he wants to do everything himself but can't. We have butted heads a few times!!
Totally understand that he feels useless and a 'dead weight' but nothing could be further from the truth! He has been told not to do anything that causes him pain until they know whats going on - so that means he can't really do anything. Things we take for granted are now an issue. Some days he struggles to lift a tea mug! It does seem though that we may have a solution when it comes to him having a bath with this little beauty!
Huge thank you to friends that popped to see him whilst I was away running a retreat especially Kurt, knowing he was staying with Stewart meant that I could relax a little.
On a different note, things are picking up speed at Buddhas & Bikes. Buddhas is open and the response has been wonderful, we are currently opening up the front of the shop and will be selling Christmas trees as of the 1st Dec! We have a long way to go and I would be lying if I didn't admit to being exhausted, a little overwhelmed with all that has to be done and generating an income to support us but we have survived worse.
You never know what life is going to throw you, so keep it real and do what lifts you up. You can't please everyone so don't try to and remember life is short, so put nothing off!
Love & light
S & S