Someone tell my muscles!

Can someone please have a chat with my muscles?? Tell them that my scan results are really good. So good in fact that the charity that provides me with palliative care support on behalf of the Belfast Trust have signed me off! Unfortunately I still have an incurable brain tumour, but it’s behaving itself and I’m no longer deemed to be at immediate risk. I didn’t even know this was a possibility. I thought I was on one path and it was only the time frame that could vary. That’s probably still true, but it looks like that time frame is potentially going to be a lot longer than was thought. 

Fantastic news! The best we could ever have hoped for. Now, in order to enjoy it fully, I just need to find a way of getting the message to my poor joints..... I remain in agony! Across my neck, my shoulders, my arms, my back, my legs and even my hands and feet. The pains move around but overall it’s just constantly uncomfortable. Not only am I plodding about like the Tinman, I also get shooting electric shock type pains. Night time is the worst. 

I refuse to let it stop me. I may have to learn to live with pains like this for a while at least. As ever I have two choices; lie down to it or stand up and fight. I don’t generally do the former.... 

Hopefully we’ll get some answers soon but in the meantime I’m gently working through. Nothing has stayed the same on this journey. This won’t last either. 

So I tentatively celebrate the fact that my brain tumour is happier with me and no longer trying to assert its authority. I’m getting on with life as I have done from the start. I am more grateful than ever for the amazing family and friends I have around me. Those that have stuck with me and shown me unwavering support and love. You’re the best! Xxx

Yaaayyy but ooowwww

I’m in agony. Everyone’s a bit noncommittal about the cause of my muscle pains. It could be medication induced lupus, it could be muscle wastage caused by so long on the steroids, it could be a virus, it could be something else. So frustrating. Especially because it’s knocked me off my feet a bit. I’ve spent the week at home, mostly moping. I’m in pain and am tired from a lack of sleep caused by the constant muscle spasms. 

Ironically this continues at a time when I should be dancing! Yesterday I had appointments with both oncology and neurology.  The news from oncology was particularly emotive;  

“your scan shows the improvement seen in the previous one has continued”..... at which point the tears started as usual! Best news ever!! 

I’m desperately trying to focus on that news and not let it be ruined by sore muscles and an ugly face rash...... those things don’t matter. They are a short term discomfort. ‘Continued improvement’ has potential to add years onto my life. Hardly a comparison...... 

My sister sent me a lucky t-shirt. I wore it yesterday and it’s currently in the washing machine...... all ready to be worn again, hopefully with the same results! Xxx

No going back.....

“Been down one time, 

been down two times,

I’m never going back again.”

Never Going Back by Fleetwood Mac 

A visit to the GP yesterday. He believes I may have a virus that could be affecting me worse due to finishing the steroids.  Bloods show slight inflammation but nothing to panic about. To be redone in 3 weeks time. 

Good news is no-one has suggested I go back on the steroids! In fairness they probably wouldn’t dare, because they know the response they’d get! I still have very sore joints and a rash on my face, but it’s improving. I’ll put up with the short term pain for the long term gain. 

I’ve stayed off work until I feel a bit stronger and am being supported by friends while hubby is at work during the day. On Thursday I’ve got appointments with both Oncology  and Neurology...... one in Belfast and one in Coleraine, but thankfully enough time between them to get from one to the other. A day to look forward to...... I’m deep breathing and refusing to get anxious about it.  Hubby is holding me close and keeping me calm. I already know my last scan results have been classed as ‘stable’ so that means they’re similar to the previous which showed an improvement. I’ll take it!

I’m also having my first hypnotherapy session this afternoon. I’m looking forward to it. The guy doing it is a friend so hopefully he won’t leave me crawling round the house, barking like a dog!! I’m much more open to alternative therapies now. Not the cynic I used to be. Going to reiki and doing my sea bathing has shown me what a huge difference things like that can make and I intend to keep them up. I’m completely sold on a more hippy-type approach. Though I will NOT be taking cannabis oil or other potions. Wellbeing and mindfulness is a big yes, replacing scientifically proven medication with untested herbal stuff is a big no.  Though I still make sure to question every pill the medical people try to make me take and have refused many of them, including diazepam (at least 5 times) and HRT (as if my hormones weren’t crazy enough due to the steroids!)

As for steroids? Never going back again. Xxx

And Dexy’s special prize......

Now that we’ve split up Dexy rewarded me with a special prize...... a trip to A&E. Sad face. 

The mad face rash didn’t improve and then I woke up in the early hours of this morning with sharp pains across the top of my back and down my arm. Combine that with a pounding heart, tightness across my chest, and mild tremors and you can possibly understand why I began to panic I might be on the verge of a heart attack. 

I tried to breathe deeply but that caused pain too. I tried to get comfortable and go back to sleep but I kept getting the sharp pains when I moved the wrong way. The only way to stop it was to lie in a position it would’ve been completely impossible to sleep in.

I tried my best but by the time 6am came I was in agony, exhausted, and terrified. Hubby woke up and, between sobs, I told him what was going on. We rang Doctor on Call and were told to go to A&E as it was the only place that could do the necessary tests etc. So off we went.......

We were in the hospital until midday today. If there’s one thing you should remember it’s that it’s fine to walk into hospital in your pyjamas and dressing gown in the early hours of the morning......... but it’s slightly more embarrassing when you have to leave that way in the middle of the day. I hadn’t even brushed my hair (though I did brush my teeth before I left the house!) Of course I met someone I know and haven’t seen for years, though thankfully she’s very nice and had also read the article in the local paper so knew what was going on with me.

Thankfully I wasn’t having a heart attack and all the necessary checks were done. The doctor believes it’s Dexy’s final revenge. Steroids can lead to muscle damage and there’s signs of that, although hopefully it’ll rectify itself through time. He also suggested I may have drug induced lupus which would account for the rash on my face, but he’s not sure. Interestingly one of the drugs that’s known to cause it is the one that almost killed me in January....... and apparently (according to Dr Google) it can take up to 2 years to manifest..... hmmm...... 

Hopefully I’ll get some answers from my GP and/or neurology and oncologist; all of whom I have appointments with this week. 

Most disappointingly I missed a Qi-gong and meditation workshop I’d signed up to do today, and won’t be able to sea swim tomorrow. On the bright side, I appear to have dodged another bullet the medications seem to keep trying to hit me with. I’m home. I’m exhausted, I’m still very sore and my face still looks like I’ve the measles, but I’m home and I’m ok.

Dexy can get lost. He doesn’t like me and I don’t like him. We’re not destined to be together. I’m resting and working on getting over the break up. But I’m not going back. Xxx

Did I read Dexy wrong??

My relationship with Dexy took another turn today..... I’m more confused than ever. It appears he may not be to blame for my turn this time after all. I got rid of him so slowly that the experts feel he should’ve taken the split ok and is unlikely to have sought revenge with face rashes, aching joints and nausea. He may even have been protecting me from these things. Suspicion now lies with my other bed fellow, Levi (levecetirum, my anti seizure medication), the flu jab or an allergic reaction to something else. Nobody seems to know. Thankfully today I felt a lot better, though still not great. And my bloods have come back good though being redone on Monday to make sure. 

Thankfully it appears that Dexy and I are officially split up. He’s accepted it and we can both move on. Maybe Levi liked Dexy being there and hid behind him. If that’s the case then he’s going to have to accept that he’s now on his own. Or else he might end up being dumped too. We’ll see...... 

Today on the sofa with Anchorman 2 was very restorative. Tomorrow I plan to do much the same. On Saturday I’m booked to go to a meditation and Qi-gong afternoon and on Sunday I’m planning a sea swim and a welcome flying visit from my gorgeous son. 

Dexy is gone and I’ve a close eye on Levi. Send me good vibes and positive energy. I need to leap this hurdle and get back to living life. Xxx

Steroids and me.......

A letter to my steroid tablets (dexamethasone)

Dear Dexy,

Why can you not just leave me alone? I know it might be difficult to accept, but after 19 months I’ve had enough of you and I want us to split up. I’ve tried to let you down gently by reducing how much I see of you over the past 6 months. I shouldn’t have stayed with you for more than 3 months to begin with, but nobody warned me how much you would get your claws into me the longer I stayed with you. Nobody suggested you might do me harm in the long term and that I should break up with you before then.

The day was always going to come when we had to just make the break. I’m disappointed that you feel the need to make me so miserable. Making me feel slightly nauseous and dizzy is bad enough, but to give me a horrible, angry rash on my face and neck, and leave me hardly able to move due to joint pain, is just mean. I refuse to be beaten by you and I wish you’d just let me walk away without all this unnecessary drama. 

I’m seeking advice, but be warned...... I will dump you as soon as is physically possible. You can force me to take you back in a limited amount over the short term, but ultimately I’m leaving you. Please rethink your position and let me get on with my life. Let’s consciously uncouple for the benefit of everyone. 

Yours in hope,

Trish

Sea healing

My second day without steroids. My poor body is deeply confused. My joints are sore and I have an itchy rash on my neck, face and chest. I’m tired and there have been some tears. 

This morning I debated whether a sea swim would be wise. I felt weak and had a headache. But I know I always feel better for it, so I packed up my bag and off we went. When we got to the beach the tide was high and, again I debated whether to go in or not. Then I realised that even being in the sea air had improved how I was feeling....... so in we went. 

Hubby jumped on ahead and I watched him diving through the waves as I slowly and delicately tiptoed my way into the water. The waves started slapping..... breaking on me. I laughed with a woman beside me as we walked in deeper. Then a wave knocked me over. I tried to get back up but couldn’t. The water was too shallow for me to swim, but too deep for me to get back up on my feet...... waves were breaking over my head and my breath was taken away from me a bit. I started to panic a little. The lovely lady beside me helped me up and hubby came back to make sure I was ok. I was but decided to get out. My quickest sea bathe yet, but still life affirming.

We got out, had some breakfast and then a nice walk looking at the sea. There is no doubt that I am weakened by long term steroid use and coming off them is going to continue to be challenging and a bit miserable at times. There is also no doubt that my Sunday sea swims are restorative and are helping me beyond what any medication could ever do.

I have a feeling it’s going to be a slow week this week...... but I also have a feeling I’m entering another positive stage in my journey. Bye bye steroids..... let’s get my cheekbones back!! Xx

Let’s try this again......

Last steroid just taken. I hope! I’m delighted yet a bit scared. Who knows what will happen next? How will I feel? I’ve been dropping them down for months and have had a few different scheduled end dates due to physical setbacks as my body gets used to doing without them again. This time I’ve finally made it to the planned last day. Third time lucky.......

“You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, 'I lived through this horror. I can take the next thing that comes along.”

Eleanor Roosevelt