New Year....feelings... reflections & aspirations

Although the news of our uncle's death was a shock to us at Christmas time, Ed and I have now reached a stage of acceptance. We now feel the only solution to our lives is to move forward and hang on to the fact that his spirit will always be with us.

It came out of the blue this morning when I woke up, my mind was full of mixed positive emotions. I decided to take my medication....eat breakfast and take a walk to help clear my head. It was a refreshing walk albeit that the weather was being very tempermental....sun-rain-wind-sun repeating itself over and over. I got home feeling quite refreshed and my mind was a lot clearer. I sat down and momentarily reflected on the past year. I found that it has somewhat helped me to regain my positivity and philosphy of life, which is to trust and believe in oneself...to have compassion for others...and to accept what will be will be in the face of adversity.

I had been thinking over Christmas of looking into a more holistic approach to help my body recover from tx. I talked to a friend (with Hepc) who suggested that some alternative remedies could have a positive affect on my well-being. Consequently with the New Year in and my aspirations regarding my health at the fore of my mind, I decided that alongside my diet of fresh fruit and veg etc I would try some remedies. Firstly I did some research into these remedies and found that the specific one's that I wanted should not have any adverse affects on my liver. I bought evening primrose oil for poor immunity, omega-3 to help poor circulation & to balance cholesterol levels, milk thistle which acts as an antioxidant in helping the liver produce new liver cells. I also included an Australian bush flower essence for irritability & impatience, and viridian for Candida Albicans (bacterial infection in mouth). Viridian is used to build up bacteria that have been destroyed by antibiotics therefore, maintaing a healthy digestive system. I already take gogi berries and a regular intake of pro biotic drinks that were recommended to me, so I am positive that my health will improve as time goes on. Of course the only downside to taking these remedies is that my future Hepc Specialist may ask me to stop taking them if he is to retreat me in in a few month's time. That I will find out when I have my first appointment with him.

My thoughts turned to my application to become a tutor for the Expert Patient Programme. Having done a six week course on how to self-manage ones life with a long-term or chronic illness, I have put to use most of what I have learned, and now feel in control of my illness and not the other way around. I now feel that I want to teach people who have a long-term or chronic illness, and feel lost or out of control with their lives, the value of self-management skills.

I was thinking of the conversation I had yesterday with my good friend Lizzy who lives in London...always has me in stitches LOL. In her spare time she house sits moggies, and I believe she now has five families of moggies to contend with. Lizzy chatted away about spending her Christmas with the moggies, which she really enjoyed. We sometimes invite her over for Christmas but this year as she was busy catting, we spent Christmas Eve and day on our own. In the summer we used to go for long walks along Richmond river banks, never getting tired, always enjoying the scenery, people, pubs and restaurants. An activity which I have missed so much in the last two-three years due to Hepc and sides from tx. So my thoughts have now moved forward to the springtime when we will meet Lizzy at Richmond.

In February we are going to meet Helen & Eric, close friends of ours, and have a meal at Presso's which is an Italian restaurant situated in Maldon. I am looking forward to that as we don't get to see each other that often, and it gives us a chance to have a really good natter!!!

My eyes gazed towards a portrait painting that I did of a 'man of the plateau', (in Tibet) from Michael Palins book Himalaya. I had forgotton that I had painted this before my tx, which was probably to do with the side effects of tx. I felt a rush of excitement at the prospects of starting up my art work again.

There is so much more that I would like to achieve but my main aspiration is to focus on staying as healthy as possible.

I almost feel guilty for feeling this good so soon after the loss of Uncle at Christmas, but with my New Year feelings of...reflections and aspirations I can only say that I feel this year is going to be a positive one!!!

Happy New Year to you all, and good luck and wishes to all you JJ'S, I hope it goes well for you, I will be rooting for you.



Marie

Christmas and New Year Part 2.

Ed and I would like to thank everyone for their condolences on the death of our uncle. Receiving so much support, kind words, and suggestions has eased our grief enormously. We will both take heed in what we have read and digest your suggestions on ways to commemorate him.

These are pictures of Kew Gardens where he would spend a lot of his time. Whilst writing this I suddenly had this idea that a rose tree from kew to plant in our garden seems like a fitting way to remember him.

Once again thank you all so much, particularly those who are on tx and experiencing the harsh sides of it. You were all there for Ed and I and we will hold you in our hearts.

Marie and Ed xxxx

Christmas -mixed celebrations

Ed and I decided to stay at home this year to celebrate Xmas, as in the past we have either had friends to stay or gone away on holiday. As youngsters we neither experienced the 'usual' or what is considered 'normal' celebrations of special events that are so meaningful in a person's life. This was due to circumstances beyond our comprehension. As the years have gone by we have both experienced positive life changes that has strengthened our faith, belief and trust in ourselves, and those around us. We now celebrate special occasions with love, joy,compassion, trust and respect.

On Christmas Day we opened our pressies and were both delighted with each other's choice's. Ed cooked me a lovely lunch which always seems to turn out better than my cooking LOL. We played sudoku, messed around with my new camera, Ed gets restless and tries to fix Xmas tree (fibre optics not working). The day ended with us both feeling happy, contented and glad to be alive.

On Boxing day we travelled to London to visit Ed's dad and brother. We were only there for half an hour when Ed's dad tells us that his uncle had died suddenly from a heart attack. We were both shocked and horrified because for one reason Ed's dad had not phoned and informed him of his death, which had been two weeks previous. Therefore we did not get to attend his funeral. The second reason was that I had grown as fond of him as Ed had been because he had been such a lovable character with a great sense of humour. He always amazed me when we would trek around Kew Gardens, the strength and stamina he possessed was incredible. No one would even think that he'd had a heart transplant a couple of years earlier.

Ed's dad had cooked us lunch and to be perfectly honest we neither felt like eating. I think Ed found it hard to contain his anger towards his dad and I was experiencing a really low ebb. As 4pm came upon us we had spent the afternoon virtually in silence so decided to have a cup of tea and cake and return home. We spent a little time in the evening talking about Ed's uncle and how fond he was of him. For a moment Ed became very vulnerable because he always had a closer relationship with his uncle than he did with his dad. It was a sad way to end our Christmas but we both tried to deal with our loss whichever way we could.

Ed spent the rest of the week embroiled in his computer....sorting the study out with my help....cleaning the kitchen...and so on. I spent time sorting out old videos....sorting and organising my study area in the sitting room...reading Judy Tatelbaum's book 'The Courage To Grieve'. Both of us not saying much but both of us understanding our internal torment.

On Saturday we decided to go out for the day so we went to a small village called Lavenham with its amazing early 14th century crooked houses. The 14th century Crooked House Gallery was inspiring for any artist as it houses paintings-ceramics-jewellery-textiles-sculpture-prints and glass. We continued to explore the village but my legs were still very weak from the side effects of HepC, so we had lunch in a nearby pub to recuperate. We had a lovely day and time out from our home lifted our spirits up momentarily.

On New Years Eve we went shopping for a dvd unit, then spent time ordering opera dvd's from Amazon. Later on we watched Jools Holland which was a favourite of Ed's uncle, so it was a fitting epitaph and celebration of his uncle's life.

So that's it, Ed went back to work today which did not please him, and for me his uncle's death has given me the strength and courage to write and acknowledge his final demise in my blog.

Marie

Hope and Light at The End of The Tunnel

THIS IS A MESSAGE OF HOPE FOR FAMILY & FRIENDS - HEPC FORUM FRIENDS - AND ALL THOSE PEOPLE LOOKING FOR THE LIGHT AT THE END OF THE TUNNEL.

No Harm in Hoping

There's no harm in hoping - so hope...

When through a tunnel you grope.

Then you may only pretend...

There is a light at the end.

There's no harm in dreaming - so dream...

Clouds aren't as black as they seem...

Keeping an eye on the blue...

Helps to make your dreaming come true.

There's no harm in letting your feet....
stray down a make-dream street,

In search of a joy that has gone....

There's no harm in wishing. Wish on.

There's no harm in praying, so pray

There's nothing to lose or to pay.

There's no harm in saying that soon

Winter will pass into June.

There's no harm in smiling, so smile

Though troubles around you may pile.

Its better to laugh than to cry

There's no harm in trying so try.

Wishing everyone a happy and hopeful 2007.

Marie

Emancipation of 'self'

Looking at the Humanistic Approach and what it means in terms of 'human development' Abraham Maslow's theory described it as a 'Hierarchy of Needs' and in order to reach self-actualisation one needs to have met survival needs, safety needs (economic safety), love, belonginess and needs for esteem. Also the experience of entering a spiritual dimension. After reading his approach I had wondered if I had met some of the needs that may have helped me to be where I am today. I began to look at what could have stopped me from reaching my potential.

As a child I was brought up in an orphanage, where I developed an incredible low self-esteem due to the constant affirmation that I was 'no good' because my mother had 'dumped' me, (their words), and I would never get anywhere in the world. My survival needs were less to be desired as I was forced to eat food that I could not even swallow, only to be rewarded with a sweet. This led to years of eating problems. I was also continually fed with inaccurate perceptions of our world, and was told off when I laughed and when I cried, and occasionally abused physically.

I wondered about 'love & belongingness and how as a child I had never experienced any form of affection or 'love' from my guardians or socially as we weren't allowed school friends. As I grew up I was repeatedly transferred to one home to another never experiencing any continuity of life, thus leading to a disrupted education. When I finally left the last home 'for girls' at 18years old, I found it almost impossible to adapt to the outside world , and unable to find any means of support. I could not see through my inner turmoil, and with not having any social skills and a limited education, I found that for many years I gave off the wrong signals to men by blatantly advertising myself as 'look here, this is me'. This resulted in years of physical and sexual abuse and my ending up scared, lonely, confused, and depressed.

As I got much older I began to see that I had problems integrating into society due to the lack of social and educational skills. I decided to enter into a College For Adult Education, spending 15 years trying to catch up with the world around me. I later spent a number of years in therapy trying to get to know who I am and why I was experiencing so much emotional and psychological problems. It took at least 30 years of self-exploration and eventually I began to see the light (so to speak). I found it easier to integrate with people, developed inter-personal skills, found my creative side and got rid of the excess baggage that had been holding me back for so many years.

In the latter years of my life I decided to enter into the counselling profession as through my own personal inquiry and exploration into human behaviour, relationships, attachments and losses, I felt that I possessed a 'valid sense of ownership' of my own past and present life. My view of counselling and its process would be to help individuals develop a renewed self-awareness, understanding and insight their problems. This process can lead to individuals finding and using their inner resources and strengths, so that they can cope more effectively with life by making appropriate decisions, therefore, taking relevant action.

During the course for Integrative Counselling I found the courage to explore my inner child. I began with researching Bowlby's own research into his 'maternal deprivation hypothesis' (1951) which was based on the studies in the (1930's & 1940's) of children brought up in residential nurseries and institutions (such as orphanages). Bowlby found that Goldfarb (1943) concluded that all institutionalised children had poorer abilities. Spitz and Wolf (1946) focused on emotional effects of institutionalism and recorded that out of 91 orphan infants in the US and Canada over one-third died before their first birthday. Unfortunately neither Bowlby nor researches recognised the under stimulating nature of the institutional environment of the absence of maternal care could have been the affects observed in children.

After much researching into human development on the course, it enabled me to continue travelling towards the long road to self-exploration and with ongoing personal development along with counselling clients, I gained a huge insight into my self-awareness, and the awareness of others. I began to feel a connection within the environment and an awareness of inter-relations of self and others that gave me a greater feeling of empowerment, and to watch and see people grow and be empowered themselves. It also gave me a huge sense of where my place is in the world.

By exploring my inner child I learned it is about separating from a feeling that one has not yet felt or embraced. It is about emotional health (living-with-feeling), learning about objectifying my feelings in order to let go. It is a way of rewriting my personal history, replacing painful memories with nurturing ones. Erik Erikson said "that the greatest sin of all is the mutilation of the child spirit". I intended to uncover my child spirit in the hope of moving along the path to wholeness. I feel that by doing and working through this exploration has given me more clarity into my own and others values - attitudes -and behaviour.

I feel that the most fundamental part of my life is having the capacity for growth and development, and although it has been a huge long journey the self-concept that I had of myself has now changed to self-accepting. I have a clearer perception of my own personal worth, and for the past few years I have and still am experiencing continuity, love, respect and holding from my dear hubby, Ed.

Now I am going to take some time out from blogging...although I have found it very therapeutic as the more I write the more my pent up anxieties re: tx seem to dissipate. So that's positive. I will either do some crosswords....watch tv (if interesting) or listen to some music....cook a lovely meal and have an enjoyable relaxing evening. Looking forward to tomorrow.

From the ever emerging and emancipated woman. Marie

Summerized Info of TX. Plus Introduction To The HepC Forum

When reading my page from yesterday I had not realised that it was so long and laborious, and readers must have had a job getting to the end of it, because I did. I came to the conclusion that in the interest of readers and myself it would be better for me to try and summarize it the best way I can.

By the sixth week I had developed a chest infection, and experienced acute shortness of breath. I was prescribed antibiotics and the infection took at least two weeks to disappear. In these two weeks I was off tx and almost came to the point of never wanting to go back on it again. On the eighth week I was advised by my nurse to start back on tx taking Ribavirin 2x2wks then 3 thereon, plus Interferon x 1 per week. I still felt pretty awful on tx but decided to grin and bear it as I thought to myself what have I got to loose.

On the tenth week I was advised to up the dose of Ribavirin to 3 per day then on the eleventh week I received a call from my nurse to reduce the Rib. to 2 per day as my haemoglobin had dropped to 8.6. On the twelfth week I was once more advised to up the dose to 3 Rib. per day. Then on the fifteenth week I received another call from my nurse to stop the tx altogether due to a haemoglobin of 8.4. My results at the end of tx were:
ALP - 66(30-135) ALBUMIN - 43 (30-51)
BILIRUBIN - 8-(0-17) PLATELETS - 211 (150-450)

HAEMOGLOBIN - 8.4 (11.5-16.5) NEUTROPHILS - 2.6 (2.7.5)

ALT -69 (0-50) LOG DROP 1 only (368464 - 40852)

THYROID - 1.6 (0.35-5.5)
I was pretty disappointed to hear this because two weeks earlier I had been put on Cyclizine 50mg for nausea and as a result of this I was beginning to feel much better. So folks that's my fifteen weeks experience of sheer hell on tx and it has taken me at least two months to finally accept that it was not for me. The hope is that as another hospital have recently accepted me as a new patient, I may be treated with a less invasive cocktail, so I have been told. More about that and tx later in my blog. Meanwhile the last few months are being spent in recovery from tx. What a relief! Now I can start living again and hope for a much better ride the next time, one lives in hope!!!!!!!!!

Now for my introduction to The HepC Forum

First of all this is Ron (left) the inventor of the HepC Forum who has worked tirelessly in creating a means of reaching out to the globle community. Without his knowledge, experience, and continual support I am one of many who has found the forum a godsend.

This is Martin and Carol on the right at The Covent Garden Gathering of hepc friends from the forum. As I learned after joining the forum, Carol is the moderator who is always there to help, support and sort out various problems that occur on the forum. Martin is the guru of the forum who has created his own HepC site which is a must for not only beginners but for everyone seeking information re:HepC.

My introduction to the forum was like a bolt out of the blue, don't ask me how I got there but when I arrived I was overwhelmed by what I found. Having never been on a forum in my life this was a whole new experience for me. At first I was not sure what to say as I was in such a hurry to find some help and support. I need not of worried so much because I was given a really good welcome from Carol, Martin and a few other Hepc forum member's who readily offered their help, support and advice to me. When I first joined the Hepc forum I was introduced to Martin's web site which has given me more information and understanding about HepC that I could ever have hoped to learn from the hospital where I was being treated! His site is an inspiration to us all, in particular for his insight, knowledge and the work he has put into creating it. I have appreciated all the help, support and advice that he, his wife Carol and everyone else on the forum has given myself and my husband since meeting them.

Meeting people on the forum has been a wonderful experience for me and even though my lovely husband has supported me all the way, I still felt isolated re: HepC, not knowing where to turn to and trying to deal with all sorts of health issues on my own. Since joining the forum I have become much happier and more positive in my skin. I have met quite a few friends who have supported and encouraged me with my illness, and my only thoughts are that it would have been so helpful if I had met all these unselfish supportive people when I was first diagnosed with Hepc. I know! one should never wish for what has gone, and the past is the past, so hey, I am now concentrating on staying with positivity and a much brighter future.

Thank you all so much for your help and advice, Ed and I are so pleased to meet such a wonderful bunch of people.

Need to sign out now to give Tommy (cat) some serious tlc as he is feeling very neglected and missing his cuddles since I started blogging. Oh dear! someone else is showing serious signs that he's lost me forever, over and out....you now have my full attention sweet heart.

Marie

My Life With Hep C 'The Beginning and Start of Treatment'

Two years before I was diagnosed with Hepc I knew something was not right with my body. I was experiencing aches, pains and severe weakness, which was unusual for me as I had always been so energetic. I went through numerous blood tests for two years and they could not find anything wrong with me. They just put it down to chronic fatigue syndrome. Eventually through random blood testing I was diagnosed with Hep C.

I can't begin to tell you how shocked, horrified and confused I felt. I literally went weak at the knees as the first thing that entered my mind was HIV, and my knowledge of this disease was very limited. My immediate thoughts were that my life would be cut shorter than I had expected, and my mind started racing around and around till I could no longer hear what my Hep C nurse was talking about. She had been extensively explaining all the pros and cons re: hep c and my prognosis, and I just could not take it all in.

On the way Ed (my hubby) and I were silent, so different to our journey up to the hospital as we were listening to U2's 'I Still Haven't Found What I Am Looking For' . My god I thought, how weird was that, must have been my ESP homing in. When we reached home we were still silent and after a while I asked Ed to repeat to me what had been said, good job he has a photographic memory. Ed explained in every detail what my nurse had said to me. I was numb and could not think straight.

I was in my final year completing a three year course on Integrative Counselling and in my second year I had been diagnosed with Diabetes which was equally shocking to hear. I had spent six months getting to grips with Diabetes and eventually learned to be in control of it and not let it control me. So when I was diagnosed with Hep C it was a double blow to me. I somehow got through the course and received my certificate which was a huge achievement for me having had a disruptive education as a child. Although I was excited about the prospects of setting up my own practice as a Counsellor, there was always niggling and questioning thoughts going on in my head regarding my illness.

I started working my practice for six months still oblivious of the nature of Hep C almost as if I had refused to accept it. Unfortunately at the end of six months I started to develop symptoms of nausea, sickness and dizziness and kept falling over. I was then diagnosed with Meniere's Disease, and started treatment for it. It was only when one day I was walking up the stairs with my client that I almost fell back on her, and even during the session I felt nauseated and sick. As much as I tried to hide the fact that I felt ill, my client then asked me if I was ok. It was then that I decided that during the counselling process the Counsellor needs to be fully engaged with the client, which I was not. I knew at that particular time I was unable to continue with my Counselling practice so I eventually gave it up.

After being diagnosed I was told that I would have to have a biopsy every five years. After the first biopsy the results showed that the virus was active but not yet in need of treatment. From thereon I spent the last five years in almost isolation, I was getting weaker by the minute, not wanting to talk to anyone, and still not knowing where to seek help and information on Hep C. In March this year I had my second biopsy which revealed that I was now RNA and Geno type 1A so I would be needing treatment. My nurse handed me a card and told me to get in touch with Julian who is an advocate at The Hep C Trust http://www.hepcuk.info/ in order to get on to my local PCT for funding. This was accepted and I started treatment on 14/06/06.

The treatment was Pegasys Inerferon 180mg and Ribavirin 200mg, and my nurse showed me how to do the injection, which was the scariest part for me.
My results at the start of treatment:

First Wk: HB 12.2 Plts 163 WBC 4.2 Neut 1.7

In the first week of treatment I firstly fumbled with the injection and misdirected it into my finger, eventually stabbing myself in the thigh which was a big mistake as it left me with a huge bruise. Then after the injection I had fever and chills, something like flu. As the first week went by I rapidly went downhill experiencing more fatigue, weakness in legs, loss of appetite, diarrhoea and irritability. I said to Ed that I wished I had someone to talk to about this, not knowing at the time that I could have rung up my Hep C nurse

The second wk's results as follows:

Hb 9.9 Plts 192 WBC 4.3 Neut 2.2

By the second week I was feeling much worse my hb had dropped from 12.4 to 9.9 in a short space of time, and I was now getting really worried about what this treatment is doing to me. I could hardly walk and spent most of the time on my sofa or on the toilet feeling really nauseated, sick and weak and with a very dry mouth. I kept wondering how long can I go on this treatment even though it's only my second week.

Third week's results: only hb 8.9 as nurse on holiday, no other tests done but got a personal phone call from my nurse saying I should reduce the Ribavirin from five to three a day due to a low hb. My nurse told me that my weakness was due to anaemia.

Fourth week's results: HB 8.8 Plts 262 WBC 4.7 Neut 2.5 Still experiencing horrible sides, ratty with Ed and just feeling debilitated and powerless physically and mentally. I was not sure if I should be feeling like this.

Fifth week on treatment. I was feeling like I was at death's door and could not get up off the sofa and thought that I needed an ambulance, so I phoned my nurse who said I should stop the treatment immediately for the next two weeks. Three or four days after stopping treatment I started to feel better which brought a smile to my face for the first time in months.

More on treatment next time. See you all soon.
Ed and I wish everyone a very Happy Christmas and New Year.


Marie & Ed