Week 15 - Sunday
I am freezing. I cannot get comfortably warm no matter what. During my massage with Carol today I realised I was cold. Carol’s treatment room was warm and inviting as usual, with the air warmed above usual room temperature; Carol was in short sleeves and her hands felt comfortably warm as she massaged the aromatherapy oils into my skin. But I kept feeling cold air on my face, didn’t want to take my socks off, etc. The massage was great and I could feel the toxins being shifted under the expert hands of the therapist and the knots in my shoulders being dissipated! But I couldn’t warm up.
I was out this morning to the supermarket and aware the air temperature outside is chilly today (with the temperature hovering just above zero) and I was warm enough in the supermarket to unzip my coat. Otherwise I hadn’t noticed I was particularly cold.
When I did notice, I realised I have been feeling chilly several times over the last few days. Last evening, I wanted to have a ‘throw’ rug wrapped around me when I sat down. Everyone else in the house - Carol, Phil, friends of Phil’s, all seem comfortable enough and I thought I was having a ‘chilly five minutes’ by myself. However, today I am aware that I can feel the coldness of the chair fabric through my clothing. As well as cool air on my face. I checked my temperature - no fever, in fact below 35 degrees Celsius.
And my head feels ’swimmy’. Several times I have found myself beginning to feel like I am reeling as I move about. And ‘vacant’ and tired. Again I just can’t find it to be concerned about doing anything. It has been several hours since I started this entry - walking away (to sit down and think, well, vegetate really) and coming back to it.
And irritable. Carol’s ‘neutral’ silence after some comment tells me - “that reaction was OTT, Ron”. At other times, Carol does a nice line pointing out to me - “that was a bit liverish, wasn’t it”. Lovely expression, probably in common usage in Victorian times (although it also appears in earlier times, such as in Pepys Diary in the 1660’s) - but it says it, referring to the anger behind the comment and at the same time attributing it to the HepC and/or medications.
And there’s no point mentioning breathlessness - that just goes without saying these days.
At one stage today I sat thinking I want my life back to the normality I had before this treatment and all its hassles. The side-effects of these drugs are as much of a problem to put up with as the HepC. If I just stopped the treatment I wouldnt be having all these difficult days, peculiar feelings and fatigue.
Then I thought no, I dont want the virus back. I guess I have to recognise this is my life at the moment. I was hoping I would feel differently after I wrote all this down. And I guess I do marginally. But it is only the reasonable, logical part of me that recognises this is my life at the moment and get on with it. ‘Keeping on going’ is probably my main task in this phase of my treatment.
Tomorrow I have an appointment with Mynurse at the hsopital. And in the afternoon I am visiting Charles Gore at The Hepatitis C Trust. So, I suppose I should be organising myself for the day - so I will stop there. PS - I think I have finally warmed up a little now all these hours later.
February 28th, 2005 at 8:55 am
Hi Ron,
My previsou masseuse, Sue, cleared the virus two years ago. She told me that she had problems throughout treatment with her temperature and felt cold all the time.
Personnally I would advise against wrapping yourself up in blanket, I mean how old are you….. Far better go out and and treat yourself to designer coat, jacket or jumper, pile on the layers, if anyone asks just say in a hauty voice “it’s westwood darling” and then tutt as if that explains it all. I do this all the time.
Did you have temperature problem pre treatment? I used to have frequent night sweats but from about the second week of treatment found that my temperature was much better, no more night sweats though occasionally I do feel cold in the sort of way you describe. Then I just throw on my westwood overcoat and saunter around the house tutting.
All the best
Jonathan
February 28th, 2005 at 6:30 pm
Jonathan, your comments made me laugh out loud when I read them this morning and made me instantly feel warmer! (Is that called throwing on a ‘Colam comment’ and sauntering about?) In recent years I have had ‘thermostat’ problems - getting to the right temperature - but I have never been cold like this before! Carol says I have had an overheating liver that has kept me warm (t-shirts indoors in winter time, etc) for years and now welcome to the rest of humanity who feel the cold! I used to get night sweats but those have diminished since I have been on treatment.
Take care Ron
March 1st, 2005 at 2:19 am
I just occasionally get the chills. Sometimes they really sneak up on me. I can definitely identify with the “swimmy” feeling in the head. At times it’s almost like the same feeling you get when you stand up too quickly … except, I’m already standing up!
As I noted in my e-mail, they are putting me on Neupogen because my white blood count, red blood cells, etc., are continuing to show significant anemia. I guess that explains my lack of motivation to do certain things.
Also, Ron, I haven’t read you entire blog, but are you super-sensitive to salt? It seems like anything that is the least bit salty has an overcoming taste of salt. Of course, here in the States everything is salty!
Well, my brother, blessings to you! I would certainly love to see the documentary you are working on.
Grace and peace,
Buzz
March 1st, 2005 at 2:48 am
Hi Buzz
Personally, I think feeling the effects of cold is partly due to my liver not ‘overheating’ like it used to - but also the meds. I also think my ’swimmy’ head and breathlessness are due to the anaemia - and that my lack of motivation and irritability are down to the meds (not me of course - lack of motivation? grumpy? [as in grumpy old man] - never!)
Not surprised you haven’t read all the blog - not sure I could either at this stage! Two years ago I made a specific effort with diet and cutting down on salt was on the list! Here in the UK, too, lots of processed (and restaurant) foods are loaded with salt, so it took me a while to get used to low or no salt meals. But I can’t say I feel sensitive to salt - just have just my ‘taste’ for using it!
I will be interested to see how the Neupogen works out - here in the UK they just seem to stop treatment if patients get too anaemic (well several people have cited this)!
BTW, doing a documentary focusing on my treatment didn’t really pan out - someone here in London is working on a general documentary about HepC and she has asked me to take part in hers. Will let you know details later - probably months from now rather than weeks though!
All the best and good wishes for your journey!
Ron
March 1st, 2005 at 9:40 am
Hi Ron,
That’s funny that you should talk about being cold as today I was feeling really cold as well sitting in my cubicle at work. I also find it interesting that some of the symptoms for Hep C are not much different from Hep B. Night sweats being one of them and foggy brain syndrome. Luckily, it’s been a very long time since I’ve experienced the night sweats. Might I suggest a daily regiment of hot or steamed cranberry and lemon juice. In the morning and at night. Congradulations on the photoshoot. A fun experience I’m sure.
Leanporklei.
March 3rd, 2005 at 1:07 pm
Hi Leanporklei
I really must learn more about HepB - I have been very pre-occupied with my own stuff (perhaps not surprisingly) and not stopped to think about the common areas.
I have seen the photo they have chosen to use - it’s me but not ‘me’ (if you see what I mean). Interesting how others see us! The ‘fun’ experience will no doubt be standing out in the middle of Leicester Square on a cold (possibly rainy) day in March gurning at passersby and/or the press!
Thanks for the tip about cranberry and lemon juice - I will try it!
All the best
Ron
January 27th, 2006 at 7:56 pm
can anyone tell me how contagious hep c is from your partner of 18 years?
January 29th, 2006 at 12:55 am
Hi Darlene
Rather than leave a comment on my blog I think you would do better to join the Forum where you will find people with HepC to have conversations with.
The website address is
http://www.ronmetcalfe.com/forum
Wishing you well
Ron