Had outpatients today, my lung function is the same at 43% and my weight is 54.4kg. So all really stable which is a good thing. It annoys me when the doctors say my lung function is really good though, as I know its higher than it has been but it's not my best. So no I wouldn't say it was really good, I'd say it was OK, don't be celebrating quite yet...! Also, why can I not hit the 55kg mark for my weight??!! Weird!
Had my port flushed and some bloods taken from it to check my liver. I stopped taking voriconazole last week as I have been on it 3 months now, so now I am having a month off before I go back on it. My results from Bristol (to see which drugs would be most effective against the fungus on my lungs) have still not returned, it's been 6 weeks now so they are going to chase that up.
Some of the nurses saw me on TV! I hadn't told any of the staff but they still found me out! They said it was good anyway and asked how it had come about. I don't like to give too much away as I wouldn't like them to find this blog, I don't know why. Just wouldn't feel comfortable with it.
Most people said they liked my TV spot. I know it was abit short but I think they managed to get quite alot in, in two minutes. Some people with CF criticised it saying I didn't look ill enough and what was the point of it, that people would just think CF involved a few pills and physio and that was it, they were quite nasty and did apologise in the end. Then on the other side parents of children with CF were saying it was good that is showed me doing everyday things and was positive, one said they would have preferred to not have the average life expectancy bit.
So either way, however it was put across someone would not have being happy.
Firstly, I think it would be impossible to put across on TV how difficult it is to live with CF unless they followed you for months and had a TV programme just dedicated to CF. Even then I don't think it would be 100% successful. Some things just can not be put across, it's something you have to experience.
Secondly, I do not think the point of the programme was to make people feel sorry for me and donate money to the CF trust. If a person with CF had been on the programme that did need oxygen, was in a wheelchair etc, all that would have done was reinforce people's ideas of what a person with CF looks like. The majority of people with CF look perfectly healthy and normal even when very ill, I think that's what it showed.
What I think the two minutes achieved was to show abit about CF, what it involves, whats embarrassing about it (it was called embarrassing bodies after all) and like the doctor said (I didn't get there in time to record this bit), not all diseases can be cured and people have to learn to live with them, which is what I was doing in the footage.
People with CF need to remember, sputum, tablets, coughing and physio to them is perfectly normal. To healthy people watching, these things are not normal and therefore it has an impact on your average person.
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11 comments:
You did brill =) Xx
Hi,
I am a lurker - sorry! I saw your piece and wanted to say how brilliant I thought it was. My best friend had cystic fibrosis and use to like using the CF forum boards....Just wanted to say that some of our friends never knew the complications on general like that CF had as they always saw her well and hid the treatment process of cystic fibrosis, including coughin mucus and physio etc.
As a viewer without CF I thought you showed CF in general terms, something that you never really see these days. Everything seems to be about transplants these days, which although is extremely essential it also doesn't portray people not in end stage CF. I am certainly not discounting this work, as my best friend never got a transplant in time but it is really important you get a good mixture of both sides.
Thank you so much for putting yourself through this, I for one am extremely grateful. I am running for CF in the London Marathon, and you doing this REALLY helps me not have to explain the gruelling process!!! Sponsors will get more of an understanding with what you have to endure by watching such shows you have put yourself forward to do.
Thanks again and a massive proud clap to you.
Ruth :o)
It was great Gemma, with anything like this you can never please everyone as CF is such a broad disease and impacts upon people so differently. Any awareness is good - people might not like things like life expectancy ettc but these are the things that hit home to people. You are so right about people with CF not realising how shocking even simple things can be to people who are well, for example creon - we don't think twice about it but to a well person the prospect of taking so many tablets every time you eat is mind boggling.
It takes a lot of guts to do media and especially TV - it is tiring and ultimately you don't have control over what is shown. so well done, I thought it was great. x
I think I'm a lurker (can't actually remember whether I introduced myself or not :s if not I'm Tigger from the boards). Anyway, I thought you did a brilliant job of representing CF. Regardless of what you said, did or showed, someone would have been unhappy with it. Before my friends fully understood CF they just thought I was skinny and coughed a lot- this is what most people percieve it as, But by you showing physio (and I thought it was brave showing the sputum by the way, I couldn't have done it- I'm a reluctant cougher in public as it is!!)and some of the medications people begin to see some of the things we go through. They don't need all the details, for a start they didn't give you enough time to show other issues of it but if they have a small insight they may want to go and look it up. Even if 1 person looks up CF and thinks "god that's awful I'm going to donate to the CF trust" it's a bonus! Ok finished rambling- I just wanted to say in a very long and complicated way that I thought you did a fantastic job! Hope you're ok! Gem x
Quote from my Mum "She's a skinny thing".
K x
I thought you did a great job and came across really well, Like Jen said it's broad. You are raising awareness. How can people say it's not a true reflection.. You laughing at yourself made me laugh..Rick
Hi
Another lurker here, just wanted to echo what has already been said. You did brilliantly!
As a mum of a little one wcf, I thought the piece came across in a very positive light but also highlighted some of the daily challenges faced. It will go in the collection of things I will show Sophie when she is older.
Dont be down-heartened by the negative comments, as to people outside the CF community, it was an eye opener to lots of aspects of the illness.
Very brave and a job well done. Thanks for doing it.
Gemma (Sophies mum)x
YOU DID EXCELLENT,my friends came over on Friday night and I made them sit through the whole programme to watch you!!
I think it portrayed a good image of CF for once all you ever see on tv is really sick cf'ers and this showed cf in a positive way how you as an indivdual are coping with it and how it effects you, I was really angry at the people on the forum sometimes I think that CF affects them so much they become jsut a disease and not a person which is not what we need, we need to be our own person too, friends/family dont want to see us moaning and in pain all the time they want to see us happy no matter how much pain we're in, you an excellent spokesperson and I am very proud of you!!
Sod them Gemma, you were fab! You showed CF being managed so you could live, what pray do tell is wrong with that? Keep doing what your doing.
Jodie x
You were amazing hun!
x
I thought you did brilliantly and you portrayed it perfectly. This is coming from a transplant campaigner! :)
The focus of this was not transplant...it was living daily life with CF. And you did really well.
Congrats Gem! xx
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