Those words reverberated in my head as if they had been shouted at the bottom of a deep gorge in the Grand Canyon itself. Nothing I did would make those words go away. Why had this happened to us?
Hi...my name is Louise, I care for my partner, best friend & soulmate who's name is Thelma. It was December 2003, just a week before Christmas, when the Doctor called with the news which would turn our lives upside down and inside out....things would never be the same again. Hepatitis C had invaded our home and our dreams. In fact, this was a nightmare just beginning and we were in for the fight of our lives. We were ready for the battle, ready to fight back and determined to evict this uninvited squatter. Bring it on, we said...bring it on. How naive we were!
The dragon had quietly gorged on Thelma's liver for around 25 years, but now it had risen from its slumber. She had been sick for two years and, looking back, the signs were all there. The typical symptoms of Hep C. Terrible crippling fatigue, nausea, itchy and blotchy skin, severe flu like symptoms and aching, loss of appetite, infections and mood swings. I still, to this day, have no idea how she continued to work full time, commuting to London every day, clocking up more than 500 miles a week. The work was challenging enough for a healthy individual, how she coped, day in, day out, goodness only knows. But things were catching up with her and eventually overtook the drive and determination not to be beaten....it was time for Thelma to stop and time for me to step up to the plate. Almost overnight, I became a full-time carer and self appointed advocate for all her medical needs.
Hospital appointments were happening thick and fast...blood tests, ultrasound scans, colonoscopy, endoscopy, biopsy and an overall assessment by a gastroenterologist with a dubious bedside manner. Thelma was prodded and poked to within an inch of her life and the obvious indifference of the specialist Hep C nurse was beginning to test me to the point that I just wanted to punch him in the face. He dared to suggest that Thelma was psychosomatic and doubted the severity of her symptoms! He really doesn't know how close he came to losing both his upper limbs. I was ready to tear them off with my bare hands. Thelma, surprisingly, convinced me it was not a good idea.
Time passed by, medical tests continued and Thelma's condition worsened. I knew the difficulties of caring for a loved one, we had cared for Thelma's parents right up to the end for each of them. It is exhausting on the body and the mind and can be a severe test on relationships. I had no idea, however, how challenging it would be to care for a partner of more than 20 years. Our relationship was about to be tested to the absolute limit. It was now December 2006, almost exactly 3 years since diagnosis of the virus was made and we were about to embark on one of the darkest winters of our lives. A 24 week course of combination therapy treatment with Pegylated Interferon and Ribavirin was about to begin. The nurse administered the first injection of Interferon and Thelma swallowed the first dose of Ribavirin. It was a Friday, a cold day, but the sun shone brightly. From here on in, Friday would always be shot day and Thelma would be injecting herself. I quietly gave thanks for that. I felt bad about it for days, but still thankful that it was not going to be a part of my duties. We returned home and quietly saw out the rest of the day peacefully together. Day 1, week 1 of 24 came to a close with nothing out of the 'ordinary' to report.
By week 8, Thelma was ready to quit. I was ready to quit. The side effects of this treatment were more horrendous than either of us could have imagined. I asked questions of myself over and over. Was I caring for her in the right and proper way? Surely, it couldn't be like this throughout the whole 24 weeks, how is a person to endure such an onslaught?
Thelma cried. She wanted out and just the very thought of continuing on made her cry some more. I made the call to the 'dragon's office' and broke the news. I was met with silence....but not for long. The next 60 seconds or so felt like I was standing outside the headmaster's office, head bowed, waiting for the inevitable swish of the cane. I felt like a naughty schoolgirl who's parents would be VERY disappointed. Then it stopped because I stopped listening and suddenly the anti-authority, rebellious schoolgirl came back to say ‘hello’ and I fired at him with all guns blazing.
How DARE he speak to me in that way? How DARE he make Thelma or myself feel like an utter failure? How dare he continue to breathe?
Thelma listened on. The look on her face was that of someone who had been beaten into submission, unrecognizable to the person she was just 2 short months before. That made my blood boil further and my tirade continued.....then I was done.
Once again I was met with silence. I did begin to wonder if my splendid retort has been for nothing, maybe he had hung up on hearing my onslaught? But no, he was still there, but a lot less sure of himself than a minute or so previously. I told him Thelma was quitting and no amount of emotional, medical blackmail was going to change that. He had threatened, yes, threatened that Thelma would NEVER be offered re-treatment again, from anywhere in the UK, that she was ungrateful and a failure. Is it any wonder I almost seared his ears permanently shut with the fire in my words? I had become the fire breathing dragon and my treasure was not going to be plundered or abused. Thelma was and always will be my treasure. This 'heated' exchange ended with the intervention of some common sense. Even though it wasn't and still isn't standard practice for the 24 week treatment regime, he decided to back down and agreed that if Thelma carried on with treatment to week 12, a viral load check would be carried out to see if she was responding. If she wasn't, he agreed that treatment should stop, but if she WAS responding, he asked, rather than demanded, that Thelma might consider seeing the treatment throughout the full 24 weeks. My response was that we would consider his offer and get back to him the following day.
The 12 week test did indeed show that Thelma was responding to treatment and that the required minimal response rate had been attained. We were, naturally, delighted to hear this but several weeks later it occurred to me that we didn't actually have any proof that the 12 week test had REALLY been carried out! A kind of placebo, perhaps? Hmmm! Our mistrust and suspicions loomed again but by now Thelma was 3/4 of the way through, the side effects had continued and my heart ached for her more and more with each passing day. We were alone with this nightmare. Not one source of support did we have. No family, no friends, no one who either understood our situation or cared to understand. It wasn't the first time we were alone with our woes but never had we felt so utterly isolated from life and the world in general. Apart from each other, I felt no love being directed toward us.....not one human being cared! This only served to make me stronger, I would be our support network, I would be Thelma's source of love and compassion. We didn't need anyone else!
Finally, week 24 was at an end. Hoorah! The end of treatment blood test told us the virus was undetected. What joy to the ears! Our expectations were high. We began to laugh & joke together, making plans once more for the future. It felt fantastic to be happy again!
Devastation doesn't even begin to describe the feeling when the call came. Thelma had relapsed at the 6 month post treatment test. We cried. We held each other, Thelma gently rocking in my arms. The hurt and the feeling of loss was soon replaced by utter contempt and hatred....yes, hatred....of the virus, the treatment, which had failed us, and the complete lack of after care from the hospital. We had been dropped like a hot cake. To be honest with you, the level of 'care' had been questionable throughout, but now there was nothing, nada, a big fat zero. I stopped calling the hospital. What was the point? They didn't give a flying toss about us. That's if they ever did. Once again, we were completely alone with our woes. Nobody cared, we didn't matter to anyone. I actually only wanted people to care about Thelma, not me. I didn't matter in all this and besides, the attitude of MY family had always been one of ''Oh, that Louise, she can take care of herself!'' Oh! Really?! Well stuff the lot of you then! We started this alone and we shall finish this alone. We didn't need anyone else.
Four long years passed us by. Life went on, of a fashion, but everything had changed. Thelma was sick, very sick. My mind was always racing, trying to think of alternative ways to help make her better. We spent a small fortune on all manner of mixtures and potions. The local Health Store staff even knew my name and I was greeted with a wide smile on each visit, but had a considerably lighter purse on leaving the store! Nothing was helping. Dare I bring the subject up? Dare I mention THAT word? I hesitated, but time was marching on. I decided to bite the bullet, hope for the best and waited for the backlash!
2010 and we were back in the same department, the same corridor of the same hospital. Everything was the same here, but nothing was the same. We sat on those uncomfortable seats, the clinical walls bearing down on us with the familiar smells and sounds permeating our very souls. I felt like screaming! Poor Thelma had a look of terror on her face. I was sure she was going to do a runner from there at any moment. Perhaps she would have had it not been for an unfamiliar, deep Irish accent calling her name,
''Hello! You must be Thelma & Louise. My name's Mary, I'm very pleased to meet you both.''
The words 'Once more, unto the breach dear friends' swirled around my head. Were we crazy? Had we lost our minds? After a fair battle, the hospital had agreed to re-treat Thelma, but it was made very very clear to us that in the event of this treatment not being a success there would be no third treatment. Almost like a threat. I remember thinking that nothing much had changed then. The consultant was just as much of an arse as he had been all those years previously. I did notice that he’d shed a lot of weight and pondered on this for a while as he 'talked us through the process.' I remember wondering if he’d been on some sort of strict dietary regime or perhaps he’d been ill.
I came to the conclusion that either way, regardless of what his exterior now looked like, he was still an arse on the inside. I'm certain he picked up on my thoughts as his words started to drift back to my ears. It was the look on his face, the look of someone who’d just realised that the patient and carer had sussed him out a long time ago. Our relationship was never going to be good.
The great news was that Thelma now had what appeared to be a much nicer specialist nurse. The bad news was that the treatment duration would be 48 weeks this time! 48 WEEKS! Were they kidding us? It was explained that, in view of the fact that Thelma had relapsed on attempt no. 1 (AN1 is our code for it), the rate of 'success' had been lowered to 30%. So, it was thought that the sensible thing to do was to double the regular treatment time, but still on the standard therapy as there had been no progress with new treatments for geno type 2 & 3. But 48 weeks of that crap? Thelma was already shaking inside but she was determined to give it her best shot. We were much better prepared this time, much more informed and much less likely to put up with any bullshit from anyone - especially the hospital. And, on top of that, thanks to inheriting a trusty old laptop from a dear friend who had recently passed (R.I.P. Kay) I had found my Hepper family online via the book of face. I cannot even begin to put into words how grateful I was and how very fortunate I was to be welcomed and accepted into some wonderful support groups, with so many people I had never met, and probably would never meet. Yet here I was! One of them and I didn't even HAVE Hepatitis C. I was just a carer, but in their eyes I was as important as anyone else. I embraced the support, the encouragement, the wisdom and the love of my Facebook friends....they had become my family.
So, here were are....August 2012, 48 weeks of torment and tears are behind us now. Thelma did it! She made it to the end of treatment! I won't pretend it was easy by any stretch of the imagination. Once again we were tested to the extreme. Some days were so bad I thought Thelma would HAVE to quit, that there was just no way she could continue to batter herself with those chemicals any longer. There were many tantrums and tears, many sleepless nights and we questioned our decision to go ahead with all the grief again. We had our ups and downs with the hospital. It was never going to be any other way and we still have zero support from our families. In fact, not once has any of our blood family even called to our home to see how Thelma's doing. Not one member of our blood family has ever picked up the phone to call us. Not one member of our blood family has mailed a card with caring, loving words of encouragement. Not even a Christmas card dropped onto our doormat. But I have my Hepper family. The most caring and compassionate group of people who understand and empathise with all we have endured over the years. People who are always there to offer a kind word or advise on any concerns I may have. Without these most wonderful people, this particular journey would have been so much harder for Thelma and myself. I cannot thank my Hepper family and Facebook friends enough. There are no words, just love.
And we have each other. That is always a constant and has been for 26 years. Not bad, huh? Of course we argue from time to time. Of course we say things we wish hadn't been said. Of course we have regrets, but we have each other. The good news is that, since week 4 of the 48 weeks of treatment, Thelma's blood results have returned showing the virus as undetectable. We are so very happy at this news, but we remain calm and level headed until the final results come in at the beginning of February 2013. Will the results favour us this time? Who knows? Maybe we'll get lucky. Maybe we'll get a break. That would be nice. If the worst were to happen we will face it together. I doubt there's much chance that Thelma and I will drive off the edge of a cliff in the Grand Canyon any day soon, or in our case, off the edge of Beachy Head here on the South East coast of the UK. We are strong! We are good together! We are soul mates and we shall prevail!
The question is: To care or not to care?
Answer: To care, always!