Thursday, 17 March 2016

It's all over now

I start this blog with about 2 hours left on my final infusion of Alemtuzumab. 8 doses split over 2 batches, 5 last year 3 this. It sounds like a lot, and when you're sat for up to 8 hours with a drip in it feels quite long, but for the year between and I'm sure for the many years after it will seem like nothing. To be honest, within an hour of leaving hospital you forget about being sat in the chair all day.

I started a new job back in January, and for a good week my computer was unusable, those days sat with nothing to do were harder than watching a bag of drugs slowly drain into my arm through a thin tube.

I might be going slightly mad however. Last night I got to sleep no problem, steroids didn't seem to cause a problem, yet when our three year old woke at 1 wanting a drink, he is suffering with a blocked nose so wakes with a dry mouth at times, I remember clearly dreaming of an infusion machine. The monotonous noise of the timed pump, watching the volume infused slowly increasing, waiting for the callback alarm for my half hourly bp check.

The thought that this is it, no more treatment, all being well no more MS symptoms, no after effects of the treatment, and a life where I have MS but no signs of it is amazing.

I've been very lucky, three relapses over three years, a quick diagnosis, and even quicker start to a disease altering treatment is the best you can hope for with a disease that is notoriously difficult to diagnose in the first place. I cannot speak highly enough of the staff at Sunderland royal hospital. From the neurologists who diagnosed me, to my dedicated MS nurse, to the infusion nurses and all the staff on the phoenix ward (infusion ward). They have all been brilliant.

The support I have had from my family has been equally amazing and I doubt I could have got through it without them.

So to finish on a really positive note, I have completed the treatment that hopes to give me a symptom free future with MS, I can now go about living the rest of my life, happy and without that shadow looming.

Wednesday, 16 March 2016

Excess energy from steroids

Its day two of my treatment and only effects I've felt so far is the restless energy from the steroids. I'm getting a big dose 300milligrams of methylpredislone each day, it makes you twitchy and keeps you awake.

So last night I finally got to sleep at about 2:30, today I'm tired from the lack of sleep, but wired from today's dose. C however got little sleep as I went into the spare room in the hope of not disturbing her, only to be replaced by two twitchy kids cuddling in and making it uncomfortably hot. She doesn't get the steroid boost so is shattered.

As the day draws to an end, the treatment was straightforward, no problems, no ill effects and I actually feel tired. Here hoping for a full night's sleep for the whole family before my last day tomorrow.

Tuesday, 15 March 2016

A year passes quickly

Well a year has passed since I started my treatment on Alemtuzumab, its passed quickly, and today I started my final round of treatment. This time its three days of treatment rather than five, and I'm being treated as a day patient.

The year between treatment has be a varied one, but as far as the MS goes its been plain sailing. I have had no symptoms of MS and no side effects or complications due to the treatment. I did have a water infection,which is unusual at my age, so put down to the treatment. But it was merely a minor discomfort, treated with antibiotics and gone in about two days.

This year is going fine so far, had anti inflammatory steroids and antihistamines first, then the dose if Alemtuzumab. All delivered through a cannula. I have felt no discomfort nor ill effects, but I fully expect to have some insomnia from the steroids and a rash later in the week.

This morning started with a visit from a practitioner from Scotland, the hospital where she works is looking to start treatment of patients with Alemtuzumab soon. As a new drug in terms of MS treatment, she wanted to see the administering of the treatment and speak with some patients about how they have found the process. My nurse was very keen to help with spreading the good word of the treatment, and I'm more than happy to help. Alemtuzumab has been brilliant for me. I have had no negative effects from it, and a symptom free year since starting treatment. Although it has not reversed the damage of previous relapses, the lasting effects seem minor to me and there has been nothing new. This time last year I had difficulty walking, a fast walk was not possible and running was out of the question. After a year I can now run as fast as our five year old, as tested by trips to the toilet during a full day walking round Chester zoo. Why must kids always wait till the last minute? But being serious it was brilliant being able to run with him, and to be able to walk for that long. I might well have been capable without Alemtuzumab, but for how ling? When would the next relapse have come? The hope is now it wont ever, and although I will always have MS, is it really MS if I'm symptom free?

Tuesday, 28 April 2015

One Month On

Well its now one month since I finished my treatment with Alemtuzumab and I gave my first blood sample this morning.  Its been a fairly straightforward month as they go (or at least as they have gone recently).  I have not felt unwell, far from it, my recovery from the problems with my leg caused by my last relapse have been getting progressively better.  I have started going to the gym again on a fairly regular basis (3-4 times a week) and that seems to be building up my strength nicely.

I now feel confident walking decent distances (not planning on the Pennine way this week, might be busy with the 50th anniversary and all) but I did manage about a 4 mile walk, on Sunday, along the cliff tops of Whitburn, half of which with a 2 year old on my back asleep.  This is something I could not have done a month ago but I now feel confident of doing so.

Not only was the walk not a problem, but on Monday I cycled to work for the first time since mid January, a 10 mile ride (and 10 mile home) without any issue.  I am slower than before Christmas, as expected, and I did feel tired when I hot home, but it was a good sort of tired, a post exercise tired, not a fatigued drained feeling.  Sitting down for a meal with the family sorted the tiredness in my legs and today I feel no ill effects.

The blood tests today were straightforward, two vacutainers of blood for analysis and away.  The hospital are doing their best to ensure that the monthly checks don't impact upon normal life, so I had a 9am appointment, which was actually complete before 9, then off to work for a normal day.  Tomorrow I have a physio session, which I fully expect to be a final one in which they simply reassess me and say my progress is good and I should simply continue what I am doing without a need to see them again.

There have been adjustments to make, diet changes to avoid higher risk foods, not just going at life at 100mph and learning to accept help more. All that said, I feel so far the treatment has been without problem, and the only negative has been being away in hospital for a week and missing my family.

Friday, 20 March 2015

Sprint finish?

Well it's my last day of infusions, and all going well I go home tonight. I can't wait to be back in my own home, with C and the boys.

The rash that started to develop yesterday is still there, slightly more widespread, but no more itchy or sore or problematic.

Currently waiting on breakfast before I head to the treatment unit one last time.

Bit less smooth this morning, the drugs went walk about.  Well it looks like the pharmacy only delivered 4 days worth to the unit, so there was about an hour delay in starting. Plain sailing so far after that.

And finally home. The rash has come back stronger than ever and I look a bit like a pink leopard.

Now that I am home, having spent all week sitting being pumped with drugs, or lying waiting for the next round of drugs, I find myself exhausted, but the last thing I want to do is go to bed. The kids are treating me no different, just as I would want, so I find myself watching tv with ii while b is in bed (asleep?)

Other than tiredness, no other problems, so I would class that as a very straightforward week. There is nothing I have experienced that would make me even hesitate to accept this treatment.

While the intense daily infusions are over, the journey with alemtuzumab is ust beginning.  I now start on a monthly cycle of blood tests for the next 5 years. Although I will not be blogging daily anymore, I will continue to give updates on my progress and condition.

Thank you for reading, and if you think this helped your understanding or appreciation of ms please share with anyone and everyone.

Wednesday, 18 March 2015

Home leg started

It's Thursday, two days left (only morning so I'm still counting this one). No more steroids, so heartburn and sleeplessness should fade now. Lets see.

Started a new book last night

He's an opinionated sort (to be polite) so should be entertaining. And to be honesthe reminds me of another hooker some of those reading this blog may have come across, so while reading I end up picturing a slightly different man at times, not sspecifically in the content of the first few chapters, but the preconceptions I have of him.

But back on theme, I still have no real signs of the rash the medics are so certain will appear, if the steroids were keeping it down today should be the day as I'm finished them, but they did say its normally seen on day 3, but I don't like to conform...

Change of dinner, no rice! Beef burger with onions. Was a nice change, one complaint, where were the chips? Pudding, tiny tub of ice cream. 

Treatment done for the day.  All went fine, no side effects. Comfortably back on the ward till tea time now.

Tea was a chicken salad sandwich and tomato soup. Last tea here, back to full sized meals tomorrow night.

The rash has finally started around 5pm on day 4. Its mild, slight redness around hairline, and a bit of an itchy scalp.

8:15 now and having had antihistaminesat about 7:30 the rash has not really developed.  Its a bit blotchy on my upper back

And I have odd spots dotted around like this one on my forearm. 

As you can see, not angry or red, there is a slightly blistery look to it, like a new chicken pox spot, but not very itchy.

Last night here ahead, no steroids today so I plan to try for an early night straight after my next obs check which is due about 10 I think. 

Hump day

For those of you that dont understand the title, imagine the week as a hill, its uphill Monday and Tuesday, Wednesday you reach the peak, the hump, then its easy going down the other side to the weekend from there.  So today is hump day.
Much better sleep last night, got off to sleep around midnight, 2 o'clock obs happened at 3, 6 o'clock obs im still waiting on as the shift change is happening along at the nurses station, so they will probably come with breakfast.
I feel really good this morning, sleep probably helped, and no sign of the rash they expect today or tomorrow yet.

Sitting now after treatment ive just realised you are all probably only reading this for the food reviews. So, breakfast was porridge followed by sausage and beans with toast. Think they know me better now, I got an extra sausage and extra toast. 
Dinner was chicken and rice with a sauce described as tikka, it was nice so I dont question. Dessert was rice pudding, think thats all they do. So by Friday I will look like a grain of rice.

Treatment was a little slow today as the canular has come a little loose under the claggy tape after three days, but it get a new one in the other arm tomorrow.

No further side effects so far. They expect a rash today or tomorrow, but nothing yet.

Those are the wounds left by the canular I've had in since Monday morning.  Not bad eh?

Oh the obe annoying side effect I have had but not mentioned is indigestion and hiccoughs. Its not from the alemtuzumab, but the steroids. Its just an annoyance really. But if you are going to get high dose anti inflammatory steroids, be prepared for sleeplessness and heartburn.

Back to food, tea was vegetable soup and a hot beef sandwich with gravy. Lovely, and I got extra bread again. :-)