Has it really been another month since my last entry???

Has it really been another month since my last entry???

I seriously don’t know where the time is flying to…. Is it because I’m getting old, because I’m on treatment or both?? In any case, my good intentions of making a weekly entry don’t seem to have materialised as yet!

Not a lot has changed really since my last entry. The tiredness persists but I’m learning to cope with it better now. Amazingly, I’m still working full time & going to the gym three times a week, so compared to many people on treatment, I honestly can’t complain!!

Aside from the tiredness, there are still three things which bother me more than anything. One is this constant urinating – the other night, I went to the toilet before I went to be at 11pm, woke to go to the toilet 5 times during the night & got up at 6am, bursting to go to the toilet! That’s 7 times in 7 hours during the night – bloody ridiculous or what?? Secondly is this constant dry mouth, with a throat that feels like sandpaper & this continual production of mucous. Sandra, my Hep C nurse, has suggested that I get a prescription for some Gelclair to ease the dry mouth but having spoken to a couple of people who are on / finished treatment, I have found that there are alternatives which may be better. One is the range of Bioxtra products & the other Glandosane spray. The third thing is that, although I’m not putting weight on, I seem to continually be having to get larger sized clothes – I always seem to be so bloated & feel so fat & frumpy (no disrespect to anyone who is in any way overweight, but I just don’t feel comfortable in myself, if you know what I mean). I have a GP appointment this Tuesday so I shall see what she’s prepared to prescribe for my dry mouth & shall also talk through this urinary frequency as well – though I don’t know what she’ll be able to do for me.

I’m still using the Dermol for my skin rash, which, although a fair bit better, is still quite pronounced. I had an hour or so outdoors yesterday when it was beautifully warm. I plastered myself in factor 50+ sun cream for sun sensitive skin & still managed to come home with pink skin, so I am obviously quite sun sensitive & will have to take care on that front too. My shortness of breath still persists too, but in all honesty, the only time it really bothers me is in the gym, although it is noticeable quite often.

I had my 12 week bloods done on 16th August (haven’t had my PCR result yet, but will put it in as soon as I get it) – take a look at them………

Talking about 12 week PCR, I did have a slight panic a few days before I had those bloods taken because I suddenly realised how important it is to get a good log drop at 12 weeks. The NICE guidelines state that a minimum of a 2 log drop is required at 12 weeks in order for treatment not to be withdrawn & I started worrying - the last thing I need is for my treatment to be discontinued because of the limitations on treatment for my arthritis.

I tried reducing my Prednisolone from 8mg to 7mg at the end of July, but within 10 days, had to increase it back again which for me, was very disappointing. I was seriously hoping that I could have made the reductions my rheumatologist asked of me, but alas, it’s not meant to be! I was getting a lot more aches & pains & stiffness & life in general was so much more of a struggle – amazing what a difference an extra 1mg of steroids can make eh?

I was fortunate to be invited to a friend’s (the one I first met for coffee not so long ago) one evening a couple of weeks ago for dinner, sauna & Jacuzzi – what a lovely evening I had! Her husband was there & her four kids – what a lovely family they are, so easy going & friendly. Dinner was very good & the sauna & Jacuzzi where just what I needed. The pair of us did lots of relaxing & chatting that evening & got on superbly well.

I also saw my first outdoor play the other week. It was a murder mystery & was showing in the grounds of Shrewsbury castle. I must say, it took me a while to get into the swing of it, but I did enjoy it overall. It was a 1920’s set & people were encouraged to attend in fancy dress, which a few did & some took lavish picnics too, with champagne & cream cakes etc, etc – made me feel like the poor relative, with my bottle of water & fruit – LOL!! It was quite comical to watch the audience as much as the play really ‘coz it turned breezy & bitter cold that evening & even rained for 10 minutes or so, but still we all sat there, wrapped in blankets & hoods / umbrellas up, watching the play well into the darker hours! Only the British would do such a thing, don’t you think?? I certainly couldn’t imagine the German’s doing that, that’s for sure!!!

Things are moving slowly, but surely, in preparation for my head shave. Raquel from the Hep C Trust advised me to do it the last weekend in September, to coincide with World Hepatitis Awareness Day on 1st October, so I have changed the date accordingly – hopefully we can get some good publicity going, not just on / after the day, but beforehand too. I have been either given or pledged £135 already, which isn’t bad going, considering it’s at least another 4 weeks away yet. I shall be making an announcement at work this Tuesday in our monthly staff meeting to hopefully gain some more support & intend to have a word with the trainer at the gym to see if I can promote it there too. I was listening to radio Shropshire this morning & the DJ said that they welcome information on charitable events & are happy to promote them, so I shall send them (& other local / regional radio stations) an email this week to see if they’ll give it a mention for me. I suppose I should even see if the local / regional papers will run an article in advance too – will have to get in touch with Raquel about this, I think. I can also promote it at the pub where it will all take place & through my Hep C nurse too, as well as on the Hep C Forum. A few of the forum members have said that they will try to come up to Telford for the event – I hope they do ‘coz it will make the whole thing so much more of a success, I’m sure.

Talking of the forum, I think I mentioned that I was getting a little disillusioned with it as there seemed to be a lot of bickering going on. Thankfully, that appears to have died a death now (& not before time) & things are starting to return to normal (did I get my wish granted for peace? Maybe…). I have also joined another couple of hepatitis forums, both of which seem to be pretty new & quiet at the moment, but have potential & the members seem really nice & helpful. I just need to get back into the swing of posting on the forums again, as I’ve avoided it for weeks whilst the arguments were taking place.

The Shrewsbury forum gathering which took place on 28th July turned out to be a wonderful success. Although only about a dozen people turned up, we had a smashing day together. I got to meet a couple of forum members for the first time & had plenty of opportunity to chat at length with everyone. Even my Hep C nurse turned up for a couple of hours which impressed the members & she told me that she really enjoyed meeting everyone & did learn from the experience, which is sooo cool, don’t you think? The weather was lovely & we spent a few hours in the park in the afternoon & had a super pub meal in the evening. Here's a couple of pictures of us all........

I have been thinking about recording a CD to raise money / awareness for some time now & as a result of a chat I had with Nick & Vicki from the NHCN that day, things have moved on a little with that too now. Nick has put me in touch with a former forum member who has his own recording studio & plays the guitar. He has managed to get a few original songs for us, which is fantastic. I have also spoken to a local chap here in Telford who also has a recording studio & writes material. I am planning to arrange a meeting with him as he told me he might also have some original songs that we can use too. I need to get a post on the forum to see if anyone can offer me some help with this project, whether it be singing, designing the artwork for the CD or something else. Nick said it would be great if we could get the CD finished by May 2008 as WHAD is going to be on 18th May next year & we could incorporate that into a national event of some kind – that would be terrific if I can get it done by then!!

I always seem to have something on the go - never many dull moments in my life, but that’s what keeps me going & prevents me having too many episodes of feeling sorry for myself & I like it that way. I got talking to a couple in the pub last night – the chap is undergoing chemotherapy for facial cancer which he has had for 5 years now. His wife was confiding how frightened she is about the possibility of loosing him & said she genuinely couldn’t imagine life without him as they have been together for nearly 50 years. He on the other hand, was saying how self conscious he feels about the drooping on the one side of his face & that he is afraid that people might treat him differently because of it. As a consequence, the pair of them hadn’t been to the pub for several weeks but last night, they found the support & sympathy they received allayed any fears they might have had about socialising. This really brought home to me that so many people have problems which are worse than my own & that people can be genuinely understanding & supportive. It really strengthened my faith in human nature. I know there are some unkind & horrible people in the world, but I must say that over the past year, I’ve met a hell of a lot of people (through the forum, at work & socially) & each & every one of them have shown me nothing but friendship, help & kindness in many aspects of my life, not just Hep C. So I’m going to close this post by raising a glass of water & making a toast to the kindness of human nature – hope you’ll join me………. Cheers!!!!!!