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.

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.

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. :-)

It Continues

Second day of treatment starts here, its 6:45 and I've just been woken for some meds. Acyclovir and paracetamol, which I'm getting regularly to combat any potential viruses or temperatures I might get.
Not a good sleep, I lay awake til after 2 due to the steroids I guess, then had obs taken and finally fell asleep some time after that. So maybe got 4.5 hours if I dropped off instantly.

Breakfast. 

Started with porridge,  then bacon and tinned tomatoes and toast. If only I could eat eggs with runny yolks That is one thing not allowed on my new diet, all eggs must be completed cooked, no runny yolkes.

I'm using tips from Shukov in my book (see yesterday's post) to get the most out of meals here. A bit of bread (or toast)  is better at scooping the last bits of porridge from the bowl than a spoon. At least my spoon didn't come from a German POW camp. :-)

On to treatment unit, canular flushed and steroids started before 9:15, so hopefully a shorter day than yesterday.  

Treatment complete for day at 3:30, save for flushing the drip. Antihistamines dont seem to have made me drowsy today, and everything has felt a lot more normal so far, shock to system yesterday.

Oh, I forgot lunch review. Chicken curry and rice followed by rice pudding, again tasty, but too small serving size.

So to tea, soup and a sandwich again. Today tomato soup, hit roast pork and stuffing sandwich.  No spare bread buns today, so I managed to get cheese and tomato sandwich and a tuna sandwich to mop up the soup. All very nice, and getting used to the rations. Sorry no pic, I ate it too quickly.

So its 8:30, visiting all over, time to relax with a book and prepare for sleep. Dont feel like the steroids have made me as awake as yesterday, so hopefully I'll drop off early tonight.

Summary of today is it went faster than yesterday, very smooth, no side effects felt so I would say so far I see nothing to ever put anyone off this treatment. 5 days of this is nothing other than that I'm missing home and family.

Treatment begins

I'm not in a house, and there is not overly dramatic voice over, but it is day 1 and I do have a geordie accent.
So it has started, about 10 this morning I started a 1g infusion of anti inflammatory steroids. At 12 I went on to my first alemtuzumab infusion.  All in all 5 hours hooked up to a drip. So far I feel fine, its a bit boring, and having to sit still is uncomfortable, but its really not bad.

Thats my canular.

Dont ask why this is now centred text, blogging by phone isnt ideal for formatting.  I am on a treatment unit for people needing a while pn.a drip, without necessarily needing a bed, so a lot of people on  chemotherapy.  I feel lucky that I'm here for something non fatal.

Although C has been here most of the day I still miss the normality of time together, and its strange not being jumped on or hearing 'dad, dad, daaaadddddyyyyy' constantly.

Lunch review

Sweet and sour chicken wwith rice. Nice, sauce had a little spice kick, nice tang of sour, and rice was good not sloppy.

Felt a little drowsy in afternoon, most likely the piriton (other antihistamines are available as Chris Evans would say) but that wore off after an hour and a half. C brought me 3 magazines from her lunch run, a gardening one, a fancy local lifestyle one, and a popular science one from the beeb. Ive read an article on the history of atomic theory so far.  It was goid if basic, and there were some ommissions like the plum pudding theory, but thats me being an over-critical physicist. 

Treatment over for the day, not bad at all. Last 10 minutes or so I felt a little cold, once drip was out and jumper back on I warmed up. Had some shivering, all gone. Walk to ward was just what I needed, stiffness from sitting gone.

Beat this as well, I got a private side room! Maybe because the steroids will likely keep me awake, maybe because its a stroke ward so I'm a bit unusual and need 4 hourly observations.  Who knows.

Reading for tonight is

And I am on gulag D. 

Without publishing this the staff decided they wanted a better review, I got an upgrade to an en suite. Not as good as the upgrade at xx castle where we got a jacuzzi, but will be handy if I need it in the night.

I forgot the food review for tea (dinner if you're down south), it was tasty, but not enough, im on steroids, im hungry! It qas soup and a sandwich, lentil soup, corned beef and tomato sandwich. All fresh and tasty, I blagged a bread bun to dip in yhe soup, so that helped. But to me soup and a sandwich is a light lunch, best served in the middle of a long hike, Bridge of Orchy hotel does a good one if you're travelling up thr wesy highland way from Tyndrum to Inveroran. But now I'm rambling about rambling, blame the steroids, mind is running at full tilt.

To summarise today, bit boring, miss home C and the kids. Haven't felt bad other than a bit cold and shivery as treatment finished, and Sunderland hospital is nice.

The beginning

Tomorrow sees me starting my treatment.  It should be the start of a life without relapses. There is no cure for ms, and it has not been sold as such. Rather as a 'firm boot' to keep a lid on it. The next 16 months will not be totally plain sailing as there are risks and potential side effects, but compared to a life of uncertainty when the next relapse will strike, or what lasting damage it will leave (progressively more), it is well worth it.
Lemtrada, or alemtuzumab, works by effectively stopping a large proportion of the immune system.  So for a while I will be left near defenseless against things that I would otherwise throw off with little problem.  The main thing that has been highlighted as a risk in this way is listeria, and which could lead to complications like meningitis.  I'm not keen on that, so I will be on a strick diet.  No meats or fish that has not been hot cooked, so nothing smoked, no pate, no soft cheese, nothing really tasty.  Its a shame, but I'm looking forward to the feast when I can again.

This week will see me in hospital for daily infusions. My first overnight stay since I first escaped over 35 years ago. I cant say im looking forward to it. I'm told boredom is my main enemy.  I will be trying to give daily updates, and hopefully I will be able to tell a tale that isn't nasty or scary, so anyone offered this treatment will know its worth the week in hospital and the subsequent rehab time. Saying that it won't really be rehab, just being extra careful to stay healthy. 

Being away from my family will definitely be the hardest bit. Although I'm away from them during the day at work, and the kids (should) go to bed around 7, I will really miss them. Im writing that with one kid singing at the top if his voice, and the little one standing cuddling my legs. You can't replace that. Then there is the time with my wife, precious little time after work and the essentials of living, but its the most important.  The time lying in bed at night talking just before the oblivion of sleep takes over. That is what I will miss most of all.