Asperation joy and disappointment

 Yesterday was tough. Not at first. At first there was real joy when I had a minor procedure on my left knee. For many years I have had a ganglion there. It started off as a small bump. It grew. My then GP told me there was nothing to worry about as it didn’t seem solid or in a fixed point. It grew some more. And more. 

For years I lived with this ganglion on my knee about the size of a golf ball, not that I know how big a golf ball is. I would often bump into things with it. It became angry red and black with bruising. I couldn’t kneel down without it causing pressure on my kneecap. By now I had osteoarthritis in my knees and MS unbalance means I often bump into tables, chairs, doorframes, anything hard and in the way of my spectacular ganglion. 

It was the subject of much curiosity and speculation. “What is that?” “How did you get that?” “What is THAT?!”

Some of that came from medics. I kept reassuring people that it was just a ganglion. Nothing really to worry about but I became worried. Then my new Banbury GP told me he would get it seen to. He referred me for an ultrasound. And treatment, agreeing that it was more than just a minor inconvenience. I had that done yesterday. 

The radiologist agreed it probably wasn’t sinister, was easy to deal with and proceeded to perform the asperation. The ganglion went down. It was nearly flat. Hurrah!

Just a small plaster and we were leaving the hospital at about the time of the original appointment because they were running early and it was all done. The joy after so many years of living with ganglion to now have a flat, normal looking knee - aaah! :-)

But then… there is always a but. A few hours later it was back. Not quite as large as it had been but there is definitely a lump on my knee again. I am so disappointed. It’s not as defined as it was. More a spread of the liquid that shouldn’t be there. The ultrasound had clearly shown the ganglion mainly had two sections, one was considerably larger than the other. I think what I now have is the smaller section relishing freedom from its companion and spreading like a content cat relaxing in front of the fire. I’m not content. I’m disappointed. 

Actually that’s not quite true. Right this moment I’m happy and proud of myself. My husband, stepson and I are on our way back to Banbury after seeing a wonderful Xmas show in Oxford. Creation theatre company will be 30 years old next year. I’ve seen and acted in many of their productions. This was the fourth Xmas Creation show we have been to. Nutcracker at the North Wall (a venue built on what used to be my local swimming pool as a child!) was imaginative, beautifully staged and enjoyable for young and old alike. But what makes me proud?

We parked the car in a Blue Badge car park bay about half a mile from the venue. And I walked all the way there. And all the way back to the car after the show! With the help of Jem of course but this was my first major walk since breaking my leg. And I had an asperation of my other leg’s knee yesterday. Proud? You bet I am!

(Did I tell you about breaking my leg? I don’t remember) 

Filling the gaps

I’m trying to remember what I’ve forgotten. I keep falling at the first hurdle. It’s like there is a tickle of a memory sometimes followed by a trickle but never a torrent or gushing brook. Oh no all these streams are making me want to pee again. 

I had a bad day for close calls on the incontinence front recently. I am getting close to needing another batch of bladder Botox. The other day me and my husband were on our way to see a great fun show in Oxford. From Banbury. 

Did I mention that I have moved? Well sort of moved. Covid made it silly to keep living in separate homes. I still own my flat in Oxford and many of my possessions are there but the address on my driving licence is now Banbury - my husband’s house. Anyway back to the continence issue. 

For many years the gift that keeps on giving (MS) has caused me to suffer with urinary urgency incontinence. That’s a mouthful to say.  One of the joys of bladder Botox is that I have some respite from this troubling symptom. But at the moment it is coming back and is accompanied by occasional fear that I will pee or even poo before I get to the toilet in time. Tena pants are bought in bulk!

I was a passenger in my Motability car as my husband drove. The pressure on my bladder was getting more and more intense. I had peed before we left home. I had even peed at the cafe we visited before heading off to Oxford. But I had drunk a Diet Coke. It’s a fatal flaw in any travel plan for me. For some reason this particular carbonated drink causes bladder and bowel action. Not instantly but usually inconveniently when there are no nearby conveniences. (Lovely lavatory language we have in England don’t we?!)

This time it was practically a race against time. Toilet time. We were in the car. The pressure was becoming unbearable. It was a dual carriageway with no stops. For miles. My husband could tell I was in agony. Fortunately he knows exactly which town (in this case the largest village in England) on route has public conveniences.  Would we get there in time? Would we find somewhere to park? Would the public WCs be open if we could even answer the two previous questions positively?

I feel like I am setting up some suspenseful trailer. Tune in next week to find out. 

No that’s alright. The answer is yes. But it felt like a nightmare at the time. And even when I had been able to use the conveniently located conveniences, the cubicles were so narrow I couldn’t self catheterise and knew I would have to pee again before too long. It was slightly less urgent this time but I was glad to arrive at the show venue where I knew there would be an accessible WC and it would be clean and comfortable and there would be toilet paper. Not that the public WC didn’t have those qualities but it was very public. I could see the feet of others waiting to use the loo under the door whilst I was availing myself of the facility. And I could hear their conversation. Well most of it. Part of me wanted to stay a bit longer. To linger so I could find out who Kate and Alice and Pete were going to “do over” and exactly why. And what tools they were referring to. But, you know, sometimes it’s good to leave the gaps. I can fill them in my imagination. I’m pretty sure it wasn’t serious. I don’t think I need to ring the police. After all it is Xmas time and lots of people decorate there homes at this time of year. 

Happy holidays and good will to you all. 

Did you miss me?

 I bet you didn’t. 

I don’t know for sure if I want to be back here. It’s been over a decade and a lot has happened. I’ve gone from being relapsing remitting to secondary progressive. I’ve met and married a wonderful man. Actually those are the two most important things that have happened. Bugger I don’t know if that first one is correct. 

I don’t think I’ve exactly had a relapse in the past decade or so but I have been admitted to hospital. At least once. I think I had a UTI. Well, I know I’ve had more than one uti but I think one of my hospital admissions was solely because of that. It’s hard to remember. In fact that’s probably why I’ve come back. I need to remember. Or at least I need to diarise what is happening so I can make sure I have a record of what’s happening. I need to have something I can look back on and go “oh that happened then.”

The thing that has happened that has prompted this return to my long neglected blog is I got the news yesterday that I have two new lesions on my brain. 

They may not be that new but they have shown up on my most recent head MRI and I don’t think I’ve had one of those for a long time. The two little buggers were unexpected. Definitely uninvited. I only had the MRI because my neurologist set it up as a precaution due to me mentioning a previously unnoticed symptom. She hadn’t expected there to be this change. I got the message through NHS app and text on Monday that she wanted to phone me the following day. 

Apparently I have been discussed at a neurology team meeting and there are a few options. I didn’t take notes during our phone conversation. I wish I had. I think I am going to get a call from a neurology (presumably MS) nurse. I think I can go back on a DMT (disease modifying therapy). It’s only looking back at this blog that I am reminded I had sworn off ever going back on a self injecting DMT. I know I had partly welcomed being deemed to have transitioned from RRMS to secondary progressive a few years ago because it meant no more relapses and no more painful self injections. I definitely know I had been told I was now secondary progressive. I’ve even been on a trial for treatment of secondary progressive MS. I don’t know whether I was on the real or dummy drug during that trial but it doesn’t matter now because these two new lesions have well and truly thrown a spanner into the works. 

So here I am. Back on my Toots MS Truth journey. A bit older but probably no wiser. Let’s see where it takes me. Welcome along for the ride.