Week 38 - Monday: NINE TO GO
I’ve had a busy few days at the end of last week, attending lunchtime seminar events at the BBC as well as working my usual evening shifts. So the opportunity for two lazy days, yesterday and today, has been good - and I have rested up and done very little.
Carol and I have finalised our plans to be in Brighton for the FaceIt Campaign Exhibition on Aug 12 & 13 and spend the weekend there. Looking forward to the event and meeting up with old and new ‘HepC’ friends and partners – and visiting the seaside, of course.
I was invited to the lunchtime events at the BBC to be available to talk with staff about blogging and the power of blogging communities. I had a number of conversations with staff who were interested to hear how blogging can be helpful to those with or interested in HepC. I am looking forward to meeting more BBC staff at the third and final event tomorrow.
I have also been collecting signatures for the ELPA petition. You can read more about the petition at the HepC Action site and download copies of it there. Fittingly, the petition will be handed in to the European Parliament on October 1st, International Hepatitis C Awareness Day.
I recently mentioned being asked to take part in another LiveChat at the Hepatitis C Trust. We have arranged this will take place on Monday August 8 (next week) between 2 and 4 pm. So I look forward to online discussions about living with HepC and the treatment then. Further information about the LiveChat can be found at The Hepatitis C Trust website – and I believe questions can be submitted in advance if you can’t get to the PC at that time. A copy of the Discussion will be posted up afterwards.
Looking back over the past week or so I realise that my roller-coaster emotionality seems to have settled down. No riba-rage ranting or nor any weeping. I guess it truly has been “letting go, healing and integrating” as I said in a post last Friday, referring to my experiences last Wednesday and Thursday. I feel less introspective, more in touch with the positives and more engaged with life around me.
Overall, I am feeling better about the prospect of the next few weeks and recognising that an ‘ending’ process is now about to take place while I start the countdown to Week 48. Nine injections to go.
August 2nd, 2005 at 2:10 am
Glad you are not feeling so rough, Ron. I so empathise when you write about the emotional surges.
It seems unbelievable that you are on the count-down now. When I was fearful about starting treatment my nurse gave me your url and it was your blog that made me believe that I could do it and cope.
I’ve just looked back and wondered why I wrote the word “unbelievable”. I think I mean that I can’t quite imagine your blog not always being there supporting everyone! It’s been the fixed point in my treatment journey, and I am sure it’s true of others.
At the same time I am so happy for you that you are in single figures.
Best wishes for the last stretch of the road.
August 2nd, 2005 at 9:28 pm
“Treatment is like making love to a gorilla. It aint over till the gorilla says its over.” Chopper John, USA.
Just a cautionary note not to get complacent. I have lost count of the amount of personal stories I have read of 48 weekers who found the last few weeks some of the toughest on treatment. As always, hope for the best, prepare for the worst.
I have found your journey fascinating, Ron. Looking forward to a successful conclusion.
August 4th, 2005 at 7:52 am
ho ron. it sounds like the last few stages of the tour de france! and you are lance armstrong!
take care all.
August 4th, 2005 at 8:39 am
Hi Ron,
i am glad you are feeling well. 9 to go. it will over soon.
i wish you good luck
Ijaz
August 4th, 2005 at 2:43 pm
Hi Ron Well done on reching your final 9 I am also on the count down 5 more of 24 little fears pop into my head HAS IT WORKED but must be patient…
I find that I have to plan each day as it arises & dont have a problem saying to folk Yes I will be there providing……. & I also only do 1 OR at most 2 things in day I am very fortunate I dont have to turn up for work 5 days a week & I can do loads from home saving commutors my Ribarage which I dont even like hearing & feeling
Finding now people who started tx after me are getting in touch & its great to be of some support Tx can be a very lonely scarey time So thanks once again for your networking/forum etc Gave details to a friend in Oz who starts 48 very soon
Good luck on your remaining weeks & of course there after
Bright Blessings Ann
August 4th, 2005 at 5:53 pm
Sounds positive, Ron - I’ve heard a few stories about the last few being difficult - but I’m sure you will cope.
BBC sounds intriguing - let’s hope they start to develop national coverage as well as some of the local information which they have used. Hopefully, some of teh shortcomings of one or two of the online reports might be rectified - the images of someone injecting drugs used in a couple of places for example!
Look forward to seeing you in Brighton!
August 6th, 2005 at 9:09 pm
I have just finished reading your journal, Ron. You are a great writer and I am glad that treatment is going well for you. I originally found your site while searching for long term cirrhosis survival rate info.
I don’t think you realize that many, many, many of us have tried treatment ( I have twice during my 24 years with HepC), reverted to active virus status and still go on living. I now have rapid, acute HepC cirrhosis and have been turned down for a transplant.
Your blog sometimes makes those of us who are farther along the road sound like we are just waiting to die. Nothing could be farther from the truth. Granted I am going to die soon but isn’t every human ultimately on that journey?
I thought I hated treatment too until I graduated to the big leagues of cirrhoisis. I have had trans-jugular liver biopsies (yep, just like it sounds!), paracentesis too many times to count and been told to get my “affairs” in order. But, you know what, it is still all good. I do not regret how this all turned out and I think to be fair your blog has to acknowledge the thousands of folks who live and die with HepC and maintain a great quality of life until their death.
thanks for listening! Richskeen
August 6th, 2005 at 10:14 pm
Richskeen
Your words moved me to want to say I am more than willing to acknowledge such courage and strength. I admire what you have written and the passion behind it.
I suspect that in order for me to stay focused on the treatment I am living through there are many things I have stopped thinking about. Thank you for speaking about your experiences.
During this treatment, I have been going through changes around my attitudes to my own mortality and ending. Previously I couldn’t bear to think about my death and ‘hated’ the ageing process. Recently I have felt I can acknowledge I am on a journey that isn’t just through hepc, but also life.
And it makes me value the time of my life now. And I recognise that in what you are writing Richskeen.
Thank you for sharing. You are in my thoughts. I wish you peace and happiness.
Ron
August 11th, 2005 at 12:09 pm
Pardon me, Ron, if I reply to Richskeen using your blog.
Its meeting people like you that makes me glad for the treatment process. We would never have met if it wasn`t for hepc. I am continually amazed at the way we all struggle with our illness and come to terms with the deep issues of our lives.
You are so right. Even on my blog, as I look back, I can see I have been overly dramatic in my struggles to come to terms with what the illness ACTUALLY means.
When you are ill it is easy to focus on the worst case scenario whereas people do live with hepc as you have.
Thanks so much, and thanks Ron for allowing me to post.
Paul.