BLOG 33
07 December 2010
Hello All,
Heres a quote from an incredible woman:
"Every great dream begins with a dreamer. Always remember, you have within you the strength, the patience, and the passion to reach for the stars to change the world" - Harriet Tubman.
I'm going to make this as short as possible. I am aware that some of the details and the frequency of blogs can be a bit much for some people. Please feel free to delete blog emails (or let me know if you need to come off the mailing list) if you're no longer interested in my journey. I don't want anyone to feel pity or sorrow just send me your strength and love and care. On the other side of this transplant is success and an even more amazing journey.
Since my last blog I have seen my resident consultant Neurologist, consultant Urologist, had a Physio assessment and then the next MRI. Finally I had my progression MRI on 12th November we were looking for change in the current small tumour on the S1 nerve. No change was detected, however, this is quite common. At the same time, my R foot is starting to drop and the leg is far worse. My perception is that my leg & foot has greatly weakened in the last 2 months. My last neuro strength test was 4/5, 2 weeks later it was a high 2s/5 by Physio. Strength tests can be annoyingly objective, depending on the tester.
Upon speaking to my Hematologist Professor, 03rd December and considering the progression of symptoms, he has encouraged me to consider starting the transplant process after Christmas, regardless of what other physicians may think. He has promised me he wont allow any other medical staff to question our decisions, about treatment. This has happened to me before and the politics involved in these processes intra & inter-hospital can be greatly difficult for the patient, both emotionally & mentally.
I will see my professor again on January 14/2011 and we will then book in the beginning of treatment and go from there. We are now concerned that the leg could completely go and be unrecoverable, so we must move regardless of the last MRI. Physio has recommended a foot brace, which we have now ordered to retain the muscle integrity of the foot and prevent drop-foot damage. Should I have any massive leg/foot failure in the next 6 weeks, I will urgently go straight in. It has been almost 1 year (since February/10) that this progression of leg problems had started, as the 2nd relapse. I am being careful where I go, in terms of pain & fatigue just places where I can go with minimal walking. Driving is fine and morphine is great, just not the two together - that could get me in all sorts of trouble. After transplant, physio has indicated that I will need rehabilitation of the R leg to get my mobility back to the best we can, with hopefully no permanent damage. Transplant will be obviously dangerous, affect my immune system, etc but could give me a lengthy remission and were always hoping for no disease at all. I am interested in video blogging my journey through transplant to help other patients OR documenting the transplant on film for a possible doco later on. Anyone interested in assisting me with filming, let me know.
I love this video: Life. Live it Well....inspirational quotes
Along the way, I enjoy hearing the interviews of other people experiencing similar challenges,
For a personal interview & take on Non-Hodgkins Lymphoma from Gene Wilder -- Click Here
For an account of battling specifically T-Cell Lymphoma from (A-Team) Mr. T.
Cabin-wise: (Gypsy Cabins, Albany Creek Apex, North Lakes Rotary) are all doing some fund raising, grant writing & consideration, raising awareness and helping me think about options to assist in getting this mini-house going. But, until we have secured it, we are very happy to receive any donations to develop this need into a reality. This really is a medical need and so we are looking for caring sponsors.
I feel that after the last 5 years of dealing with all this, this Stem Cell Transplant will be a turning point health-wise and all around for my life/my family life. After transplant, I will live away from the family for my own health, physically, mentally & emotionally, to prevent infection & burn-out, I have to put my health number one (my loved ones understand this). I am also aware of the strain that being the major Mr. Mom of 2 little girls (one being a special needs child) puts upon a man. We are talking about his health and the girls health also. Seriously, we so need a rent-a-mum/mom service find a God-Mother employ a step-mum/mom.
Whatever it takes to keep me healthy and the family healthy health is number one and we will do what we can and consider the all the options. As I step through this next phase, I am relieved but (of course) thinking deeply about all that is to come....I need lots of loyal friends to get me through this next stage keep me going hands to hold stupid jokes to laugh at chats and memories visitors (scrubbed up & masked)!! its all good and I will be cared for well in hospital, by some of the best nurses and Hematology doctors on this side of the world.
I am looking forward to getting some more wigs and trying new styles, happy to get any suggestions....send me all your wig pictures. Hoping my hair will grow back eventually, who knows and really who cares - loosing it for the 3rd time, gives me the positive of being able to change my style daily. Thank you all for your constant love, friendship and prayers I am always here help to continue consulting and advising anyone who needs assistance in terms of consumer advocacy & health questions.
My Christmas will be very quiet, may not actually do much at all I pray yours will be blessed and the best ever. I would love to hear from lots of my friends over this Christmas Love,
Kisses & Christmas blessings, Jodie G.
For nothing is impossible with God (Luke 1:37) NIV.