I was greatly saddened today by the untimely death of British actor John Hurt from pancreatic cancer. It brings it home that this nasty cancer makes no distinction between famous or infamous, rich or poor, deserving or undeserving, and shows with a slap, the fragility of life.
It has a poor survival rate and days like today emphasis the need to give thanks for our families and friends, and how even though I am over 2 years post surgery, I cannot be complacent. I go for my blood tests on Monday, and see my oncologist in a couple of weeks to see if my blood marker levels are still low or increasing. I am often asked how I feel, and the answer is still in some discomfort especially on my right side, and I am having increasing episodes of intense nausea and sickness, but I do not know if this is cancer or Parkinson related or a mixture of both!
I have managed to change my Parkinson consultant to one who is a Parkinson specialist so I look forward to meeting her in due course, it means a slightly longer travel to appointments but I am sure my care will be improved as a consequence.This demonstrates how we are ultimately responsible for our care and if we are unhappy with the care from our consultant then do something about it, be proactive and take charge of our care otherwise we get lost in the system.
Our Parkinson's nurses in Cornwall, are far easier to contact and while they do cover a large work load, they are reactive and only a phone call away. I have seen a marked deterioration in my movement due to the Parkinson`s Disease (PD) it takes me a good hour to start walking normally (for me) in the mornings, strangely enough not as bad if I have had to sleep in my reclining chair rather than my bed. I tend to walk with a shuffling gait first thing and a lot of lower back pain, but once I take the Madopar and Tramadol, followed by the Rotigotine transdermal patches which has just been increased to 8 mg (2 x 4 mg) to see if my tremor in my left side settles down a bit. It is amazing how my tremor increases even talking on the phone or in any stressful situation. Distraction techniques tend to work when this happens, it may be headphones and music or just a brief dog walk which settles things down.
Luckily my love of going out in the car to the coast path, beach or woods with the hooligans (Max and Perdy the Jack Russell's) is not too badly curtailed though I need to be extra vigilant as I have had a couple of potentially nasty tumbles whilst out and about so not a good scenario if I were on the coast path when it happens!!
I am continuing with my book, based on Cornish myth and to this end as I am having troubles typing at times as my fingers keep missing their designated key while typing so as a consequence I am spending as much time making corrections as telling a story! I have invested in some speech recognition software (Dragon v15) which is now installed and working to an extent. It takes time to `tame the dragon` so it gets used to my style and my pronunciations, never mind my Cornish accent, so I do get some rather interesting interpretations of what I spoke going onto the laptop scree at times!! However I persevere and no doubt next time we meet in this blog I will be singing its praises..... honest I will!
Before I close, some of you will know of my involvement with a fascinating facebook Parkinsons support group , The Parkinson`s Support, Chat, and Social Community. ( https://www.facebook.com/groups/490857204425819/ ) Our membership is now in the 900 mark and growing. We are having a weekend get together in June this year 17th /18th and we we be doing a sponsored walk up Snowdonia raising funds for Parkinsons UK www.parkinsons.org.uk/ Some will get to the top and some will only manage a shorter distance, but we are giving it a good try.
If you feel you could support us, please use this just giving link https://www.justgiving.com/fundraising/Michelle-Ellis7?utm_source=Facebook&utm_medium=fundraisingpage&utm_content=Michelle-Ellis7&utm_campaign=pfp-share copy and paste into your browser.
Michelle Ellis is a group admin and we decided to use this one page for just giving donations. All th money raised plus the gift aiding will benefit Parkinsons UK and the support and research they provide.
Well, I need to get the Sunday roast completed to feed young Gemma so I will sign off for today, Thanks for taking the time to peek into my life with Parkinsons and Cancer, please share this blog with anyone you think may be interested, and thank you from the heart for your support.
