November 3, 2008

MON 3 NOV

post tx week 17 By Lynz

whatever next!  i fell and broke my arm on saturday morning, hence i am using all lower caps cos its easier to type that way one handed. i was out shopping with mum-in-law (who doesn't drive and father-in-law is still not driving after a second hip replacement) estee was golfing.luckily my daughter t-lee was at home and came to my rescue.  in the meantime estee had finished his game, had got my tearful message, and was on his way over.  he collected up our good friend mattie the fisherman who took mum-in-law home and their car which i had been driving.  estee then took mattie home. 

louth hospital were excellent.  i have broken the humerous bone just below the ball socket so it can't be plastered, only held still by a sling.  we were registered, seen by a nurse and then a doctor, x-rayed, seen the doctor again and on our way home within the space of just over an hour.  that's not the end of the story though.  later that evening i thought i would have a madisonal whisky, alright two, just for the shock and pain you know.  note here that i haven't drunk whisky for years, preferring champers or a glass of wine.  we had lit the fire and it was lovely and warm and the pain began to lessen.  next thing i knew there was a paramedic checking me over.  apparently i collapsed and estee couldn't bring me round.  apparently i had low blood pressure brought on by shock, whisky and heat.  the paramedics were lead here by a finder and i understand an ambulance also arrived.  today the swelling and bruising have come out and it is quite painful, hope it lessens soon and i feel up to a shower and hair wash.

so just as life was beginning to feel a bit more back to normal, i have this setback.  maybe i was trying to do too much, who knows.  anyway i now have 8 weeks of enforced incapacity and rest ahead of me.

on the hep c front, the tx memories are beginning to fade, although i doubt they will ever disappear completely.  even tho there was no blood spilt after my fall, i still felt obligated to let the hospital staff know the situation.  don't know if that is necessary?  just feel like i would hate to pass this virus on to anyone.  joint pain is still with me, it wasn't stopping me walking though - it doesn't seem to make it worse or better, and i still get water retention in my legs.  i had stopped gaining weight but still have the oversized tummy, which everyone finishing tx gets.  it's gonna take even longer to get rid of now. 

 

October 14, 2008

TUE 14 OCT

Post Tx Week 14 By Lynz

This weekend saw a huge step forward for me.  On the Saturday I went fishing all day and on the Sunday I played 9 holes of golf.  Not far from being like the weekends I spent before tx…..   I didn’t become overly tired and I didn’t get grumpy – a near miracle!  I think Estee felt like he had got his wife back.  My golf muscles (or lack of them!) ached the next day and I was a bit sore and stiff, but that is to be expected after a 16 month lay-off.  At the same time I cannot believe how unfit I have become in that 16 months, even walking down the fairway made me breathless!

I have also been walking for 30 minutes every other morning and it doesn’t seem to make my feet hurt any more than if I didn’t do it, so I shall battle on with it.  I have now got a power walking stick to help propel me along and that does help me keep going.

So it seems like it is a long, slow journey to recovery and every so often I will feel like another piece of the jigsaw has fallen into place and I have taken another step forward.  I still have difficulty in concentrating… I find I will be thinking about something and then my mind will go blank and I have to retrace my thought pattern to try and remember.  I also seem to do everything at a much slower pace than before, the need to hurry to get something done is just not there.  I also still feel much older than my ** years!  I had some highlights put in my hair thinking it would help, but found out I preferred my natural half grey look.

I can just about remember how I felt a year ago as now and what I could achieve in a day at that time, and I realise, and am grateful for,  just how far I have come.

September 30, 2008

TUE 30 SEP

Week 12 Post Tx By Lynz

Twelve weeks into detox - that must mean I am about half toxed! I thought it might be interesting to make a list of my symptoms at this stage, as I did at the very beginning, and then again at the end of detox (if I remember!)

 

Bruising easily

Rheumatoid arthritis type pains in my joints

Forgetfulness

Weight gain - during but mainly after tx

Some improvement in my temperature control

Oedema

Sudden tiredness

Noise doesn't bother me so much anymore, I no longer need to find a quiet space to hide in.

 

 

I'm hoping that the above symptoms are the cirrhosis and nothing to do with the hep c, but it will be another three months before I know that for sure. A definate improvement from how I felt during treatment, although the memories of that time linger on.  The treatment certainly slows you down and I don't feel 100% myself yet, but this is normal apparently and I shouldn't worry to much about it (they say).  It's kinda like I know what I want to do but the body isn't quite ready to follow it through.  Like feeling 95 in a 55 year old body. Or, the spirit is willing but the flesh is weak!

 

It was my three month post tx check up with Dr Sree today.  Good news!  Apparently my bloods are more or less back to normal, which is a good sign for getting an  UND at the six month mark.  Symptoms that I still have, such as the joint pain and oedema, I may have to learn to live with - a small price to pay - and is due to the cirrhosis as against the hep c.  Dr Sree couldn't get over the amount of weight I had put on - 8kgs since I last saw him - and said we will have to keep an eye on that if it continues (thyroid problems? I didn't ask)

Perhaps swimming would be a better option than walking to help me get fit (easier on the ankles)  I don't much like getting wet in the winter time but guess it might be worth a go.

I have rejoined the golf club as a full playing member as from the 1st October

and hope to play some holes this Sunday, weather permitting. 

The date for my SVR (sustained viralogical result) is 7th January and I shall see Dr Sree in February for the results.  If I get a negative or undetectable result at that time that is as near as I will get to being "cured".

All in all, I was very pleased with my visit to the clinic and remain optimistic for a negative result.  the best bit though is that I am beginning to finally pick up the threads of my life and move on.  Swimming, golfing, walking were not things I could even consider three months ago.  So anyone still undergoing tx please take heart, things do improve although its hard to see your way through it at the time.

September 9, 2008

TUE 9 SEP

Week 9 post tx By Lynz

It's hard to believe nine weeks have passed in a flash when the previous 48 weeks seemed to take forever. 

The results of the biopsy on my forehead only showed some sun damage (well, he gave it a long name, but that's what he meant).  He said if there had been a fungal or bacterial infection it had gone.  All I know is that since I stopped applying their creams and finished my treatment it has disappeared on its own.  Well, it is just visible but I can live with that.

The results of the ultrasound scan showed nothing untoward either and my blood test gave the ALT a reading of 19, which is promising for an undetectable result in January.

My weight has stabilised and stopped increasing, thank goodness.  I still have the achey bones in my ankles which prevent me from walking too much and I get the occasional headache, which I never got before tx.  I still get tired when i try to do too much, but I have learnt to recognise the signs now and I just slow down a bit.  I'll never learn my limits because its human nature to try to do as much as possible! 

My hair has just started to grow again and I see that posh spice has copied my crop, albeit hers is a different colour to mine!

I am now taking a daily supplement of vitamin b and milk thistle to help support the liver, I still drink plenty of water and herbal teas.  I try to eat as much fruit and vegetables as I can everyday.  I eat fish again but it still doesn't taste quite as good as it did before treatment.  Sadly, there is still no way I could play a round of golf just yet, but I'm still optimistic I will be back playing in the springtime.

August 27, 2008

WED 27 AUG

Week 7 post tx By Lynz

I had a bad day last week, I wasn't expecting to and it took me completely by surprise.  It was awful, just like being back on treatment again.  It brought all those memories back into sharp focus again.  It's quite normal apparently.  Perhaps it was a sign that I had been trying to do too much so I rested for a couple of days and was soon back to my post tx self.

This is why I think it is important to catalogue what happens after treatment as well as during.  It's like the convalescent period. 

I have been doing some walking and the hill that used to make me breathless no longer has that effect on me, progress indeed!

I have put on the stone in weight that everyone dreads when treatment ends.  I was only ever this big when I was pregnant with my first daughter!  I see Dr Streedharan at the end of September so if I haven't lost any weight by then I will ask what I can do to improve my metabolism, other than walking - perhaps I am just to impatient! 

My achey joints are just the same, unfortunately.  Not bad enough to warrant painkillers, just annoying.  They make me feel about 90 years of age, and if you saw me hobbling about sometimes you might think I was.  Again, its quite normal apparently.

August 17, 2008

SUN 17 AUG

End of Week 5 Post Tx By Lynz

This week I have been on holiday, we didn't go anywhere like Mauritius or Portugal or Australia, but I feel 100% better than I did before the holiday.  We just had a week at home pottering about and doing what we wanted to do away from the office, the computer, the phone and the routine of everyday life and it was bliss, long, long overdue!  We went fishing one day, shopping one day and had lunch out, pottered about in the garden when the weather allowed and we even went to the golf driving range.  I cleaned ALL the windows inside and out - a major achievement as I couldn't have cleaned one successfully a month ago.  We bought some books to read.... I bought one that was top of the best sellers list thinking it would be good and when I got it home I realised it is all about vampires and werewolves - never knew so many people could be into that sort of thing.  Anyway, I will persevere with it. 

I have started exercising on the treadmill and doing a few weights.  My ankles and elbows are still very painful, a bit like arthritis, or rheumatism I suppose, and I hobble about but the more I walk the better it is - until I stop :) That to me is a major achievement and means I can start to get fit again.  The golf range was fun.  I hit 40 balls and only mis-hit two, infact I couldn't believe how well I hit them, neither could Estee!  Of course it will be different once I get on the course again, I expect it will all go to pot.  I noticed I hadn't cleaned my golf shoes from the last time I wore them in early July last year - perhaps they remembered that I finished on the 16th with a birdie :) which at the time I thought was a very appropriate moment to put my golf game on hold.

Next week I have an ultrasound scan on my pelvic area and abdomen and another blood test to check my blood and also kidney function.  I also have to see the Dermatologist the same week.  My forehead is very much improved - obviously the more my immune system improves the better it has got.  But I shall keep the appointment, get my biopsy results and hopefully he will say he doesn't want to see me again. Estee played an enormous role in helping me through the 48 weeks of treatment, how he coped I'll never know, and he is also an playing an integral part of my post treatment recovery.  He never pushes me, well alright he does a bit, and he is always encouraging me to take one more step forward. I love him to bits.

So, I am discovering that there is life after tx.  My health will never be 100% again, but who's health is?  

August 4, 2008

MON 4 AUG

4 weeks post tx By Lynz

The transition of the new me continues, and I do admit to struggling some days with something akin to an identity crisis.  People ask how I am and Estee says she's getting back to her old self, but I'm not and never will do.  I cannot be the same person I was before being diagnosed with hep c and undergoing 48 weeks of treatment.  Post tx is a bit like recovering from a long illness, some days are good and sometimes I am just plain ole tired and grumpy.  Probably alot has to do with the frustration of not being as well as I would like to be.  I had hoped for a quick detox but didn't allow for the awful aches and pains in my ankles which see me hobble along like the old lady I feel I am some days!  So that is frustrating my return to fitness.  I do still feel slightly detached from everything and everyone but the feeling is not as strong as when I was on tx, its like its just there in the background, reminding me.  Kinda like waking from a bad dream and not quite being able to shrug it off.  Ghosts of the past perhaps.

My forehead continues to improve, indeed the redness has almost gone but I do wonder if it will leave a large, faint scar that never fades completely.

My taste buds have also improved and I no longer live on chips, thank goodness.  All vegetables taste delicious again and I am getting a much more varied and nutritious diet.

My hair seems to be still falling out, and isn't growing very quickly either, but I don't mind the short crop style for summer, but hope it grows a bit before winter!  My nails are still soft - after a lifetime and having unbreakable, strong nails, it feels odd. 

It was wonderful to get the undetectable result but already I am worrying about the six month test.  I can't do anything more to help the outcome except eat healthily and try and build my strength up, so I must try and put it to the back of my mind for now. 

On the positive side I do have more energy than I did a month ago and I have managed to extend my bedtime until around 9pm instead of 7.30-8pm! 

 

Two days later 

Today I woke and felt as near my old self as I have done since 7th August last year, and my morning routine felt like it was my routine of old instead of wandering about for hours in my dressing gown and slippers..... it felt like there was a purpose to it all.  Still got the achey ankles, but I have read that anti-d's can cause aches in various bones in the body, so can bone cancer but we arn't going down that route.  So I am now anxious to get off these pills as soon as possible.  I see the doctor about another problem tonight so I shall ask her the correct way of reducing these pills.  I never have been depressed but they did help enormously with the side effects of the tx.

July 25, 2008

FRI 25 JUL

6 month PCR test result By Lynz

!!!   UNdetectable   !!!

 

July 22, 2008

TUE 22 JUL

Week 3 Post Tx By Lynz

Yesterday I had a biopsy done at the Dermatology Clinic on the "hole in my forehead".  The Doctor thinks it is Porokeratosis of Mibelli but has done the biopsy to discount there being anything untoward wrong.  The P of M starts as a small brown spot, which I did have on the side of my forehead.  Due to my almost non existent immune system it has somehow triggered the thing off.  They are harmless but ugly and very difficult to get rid of!  Needless to say I can now stop applying the fungal cream and blaming the dog, bless him.  I have about 3 weeks to wait for the result and see what happens next.

How is the detoxing going?  Well, I was very tired after yesterday and slept 12 hours.  It seems to take very little to wear me out.  My head feels clearer and because of that I feel I can do more but then my body will remind me that I can't.  As I sit here I have a stretchy support bandage on my left ankle and another one on my right knee.  My other ankle is also very painful, not to mention my left shoulder and my right elbow.  I'm nearly off my feet!  There are one or two other minor problems which I have to take up with the local doctor - too embarrassing to mention here!!

Lots of headaches, and even more susceptible to sunlight than I was on tx as it has an immediate, painful effect on my eyes.  Hats and sunglasses are essential when going outside. 

I did not lose the 2lbs I wanted to - too much joint pain to exercise!  I didn't make it to the golf range either, but hoping to this week.  I had a lovely note from our Ladies' Captain at the golf club wishing me well now my tx has finished.

Tomorrow I am having a manicure and a pedicure at a salon that uses all natural, non chemical products.  I think a little bit of pampering will do me good!  It has been booked for about three weeks now, so I am looking forward to it.  I am also hoping that I can drive myself there - that will be another "first".

I am still awaiting the result of the pcr test I had done when tx finished - although it should be through any day now.  Can't deny I'm feeling a tad nervous, but whatever will be will be.

July 14, 2008

MON 14 JUL

Week 1 - 2 post tx By Lynz

I'd like to say I am brimming over with energy now that I have had a full week off tx, but I'm afraid its a lot more subtle than that.  Hardly worth mentioning really.  But that's only because I'm very impatient to get "back to normal" if there is such a thing anymore.

I had a full day out last Thursday walking round an historic house and its gardens and had a picnic in the grounds which was really nice.  My feet ached badly the next day.  I do seem to get quite a bit of pain in some of my joints that I never did before, especially my feet and my shoulders. 

Sunday I went fishing with Estee and I hadn't done that since about week 4 of my treatment. It was a lovely warm day with just a slight breeze and I really enjoyed being out in the open air.  Interestingly, there was another man and his wife fishing and a man and his daughter fishing.  It's surprising how many women do fish.  I used my new plastic maggots and they worked a treat... you can't tell them from real ones once they are on the hook.

I also cleaned out the inside of our vehicle and got everything where I want it for when I start driving again.  I'm coming to terms with the fact that it was a long treatment and recovery is going to be long as well.  I set myself little tasks which is quite good fun.  This next week I have to lose 2lbs which will take me under **stone!  I am also going to drive myself to the asthma clinic on Wednesday (something I should have had checked last year but I put it off until after tx because I wasn't sure how my chest would react to the meds) and I'm hoping to go to the golf driving range and hit a few balls - that should be interesting with my achey shoulder and achey elbow, shoulder is on the left and the elbow hurts on the right so they might balance each other out.

So I guess I am trying to do more things, but its all very leisurely and I think if I don't get it done one day I can always do it the next day.  Considering time may still be of the essence I've become very philosophical and laid back!!