My two weeks were up. It was time to start taking the chemo drug again. I can’t stress enough at this point how much I didn’t want to go back there. I was still feeling pretty rotten with the lurgy, which was now starting its third week of residency inside my body. So in hope that pity may be thrust upon my sick self once again, I decided to put in yet another call to the rheumatology clinic to get more advice. It wasn’t until that afternoon that a specialist nurse called me back . I explained how poorly I still felt with the virus, how going back on methotrexate (MXT) filled me with dread and how sick the drug made me feel before. Looking at my notes, she discovered that I had never been to visit the rheumatology clinic to meet with a nurse to discuss my situation since I was transferred to the NHS and was even more concerned that I had been on MXT without any guidance or support at all. Yet again, I couldn’t hold back the tears and cried a lot down the phone to her. She listened to why I didn’t think my symptoms matched to RA, but she sympathetically told me that everyones symptoms vary and I did have a high Anti CCP count. She then recommended that I started back on MXT because it’s much better to “Catch the disease early and get you into remission”. She recommended that I start using the injectable version instead of the tablets, as administering the drug this way didn’t make you feel as sick. This wasn’t the advice I was looking for. I bloody hated needles at the best of times and the thought of injecting myself filled me with complete horror. I had visions on me trying to inject myself whilst looking away, I mean.. how was that going to work. Fortunately, to get me onto the metoject pens, you have to have a lesson in stabbing yourself in your leg and they couldn’t fit me in until after my operation. Cue sly smile at the end of the phone. However, the smile was soon wiped off my face as she finished the conversation by telling me to continued taking the dreaded tablets for the next two weeks up until my operation. I got off the phone and burst into tears. What got me the most, was the confusion of what was best for me. My gut was screaming “DON’T TAKE THE PILLS YOU CRAZY WOMAN, THEY ARE BAD FOR YOU, THIS IS ALL WRONG, YOU DON’T HAVE R.A!”. Yet the voice of doom (Dr X) in my head would be saying “The disease will take over your body and you will never be able to turn the clock back”. Then the voice of reason would pop up to add its 10 pence worth, “But if you listen to the nurse and take the drugs then you will have no idea how you feel in the run up to your operation. If the implants are the issue, how will you ever know?”
I didn’t have much time to untangle the mess in my head and work out exactly what I was going to do, as I needed to pick up my youngest. The timing of this emotional breakdown couldn’t have been any worse. It was that time of day when I had to go and stand in a playground of parents and make polite conversation. No make up in the world was going to hide my puff ball eyes, Rudolf nose, and red blotchy face. But to be honest, I was too mentally and emotionally exhausted to care. So I put on my sunnies, took a deep breath and got on with the school run.
That evening, it was time for me to take the pills. I sat with them in front of me at the dinner table, still not 100% sure what I should do. So I did a little reasons to take them and reasons not to take them list.
Not to take them..
- I was still feeling pretty rotten from the virus and I had to be in tip top health for my operation in two weeks.
- Surely two more weeks wouldn’t make a difference.
- Holding off would mean that I would really know the benefits of the explant.
- I wouldn’t feel sick or super tired
- I wouldn’t feel like acid was burning through the lining of my gut after taking them
- Surely two more weeks wouldn’t make a difference
To take them..
- control the disease you don’t think you have
- its the advice of the professionals
I picked up the tablets and chucked them in the bin. ‘Not to take them’, won by a majority and boy did I feel like it was the right decision.
However, it wasn’t an easy couple of weeks. I was so aware of every little ache and pain in my body, I was on a constant look out for a ‘sign’ the disease was taking over my body, that I found myself constantly worried I had made the wrong decision. To add to it all, my youngest pumpkin got another bladder infection. She was in desperate pain and had to have a few days off school while she recovered. That was then promptly followed by slapped cheek syndrome aka Parvovirus B19. This gave her a temperature, earache, her nose started to run again, she also complained of a headache, light sensitivity too and to top it all off, she was up all night. Poor little monkey had been poorly, on and off, for weeks now. Luckily for me, according to my new best mate Dr Google, if an adult gets Parvovirus B19, amongst other symptoms they can get joint pain. So, yet again, there was something else that I could put my current little niggles down to.
A few days later it was Easter Monday and I started to feel really unwell again with flu like symptoms. To add to it, I was also sleep deprived thanks to looking after my youngest all week and still hacking up the glowing green stuff from my month long barking cough. This was now giving me a weird dull back ache and because I felt so bruised from the inside out, my lungs hurt every time I breathed in. Concern was creeping in, I had exactly one week until my operation and I could barely move from my sick bed. I needed this to be vacating my body immediately, as there was no way I was going to postpone the day I had been waiting for all these months. Only one thing for it, to call the out of hours Doctor. My appointment was booked for 12.45.
Thank god for an automatic car, that can pretty much drive itself and a 12 year old who was my wing man. I am still unsure how I managed to get out of bed, into a car and drive 25 minutes to the emergency surgery feeling the way I did. But we arrived there safely and ended up sitting in an over crowded waiting room for an hour and a half. We eventually got called into see the Doctor, who was a really nice man. He listened to my chest, said it was rattling and pointed out a rash that was making an appearance.
Dignosis – Virus and Chest infection.
He gave me a course of antibiotics on the spot and told me to start taking them immediately, so I would have a fighting chance of making my operation the following week.
I went home, did as I was told and collapsed into bed.
The next morning I started to feel human again. The aches had gone and I had managed to get a decent night sleep. My husband was back from working away and we decided it would be nice to treat ourselves to a full english breakfast at the local farm shop café, as the cupboards were bare. After filling our bellies, we took the dog for a lovely stroll around the woods. Storm Katie had finally blown away and the sun was streaming through the trees. Everything seemed so normal and perfect. For the first time, in a long time, life felt great and I certainly wasn’t taking it for granted. Not one bit.
It was only a few days now until my explant and hopefully this nightmare would be over for good.
Click here to read what happened next… xx