Tuesday 31 May 2016

Blog - The book

The blog has now had over 42,000 views worldwide which I think is quite an achievement. I had always hoped that this would reach and help as many people as possible receiving, considering or researching Lemtrada as a treatment.
As the blog grew bigger I received a lot of requests for it in a more 'MS Friendly' format and I decided to publish it. Unfortunately it can't be done for free, but it can be done for a VERY good cause. All royalties from sales of the book are going directly to the UK registered MS charity ShiftMS
SHIFT MS registered charity number: 1117194
It's not a great literary work of genius I'll admit that, but it's going to a very good cause so please consider picking up a copy from the amazon store
Happy reading.
To the guys and girls of ShiftMS thank you so much for being there for me and so many others during our battle with MS. I hope this does more than just help refill the petty cash tin xxx

Thursday 26 May 2016

Round 2 - 6 days Post treatment - IV Steroids are evil

This is something I should probably have done a LONG time ago. It's quite high in my mind (well what there is of one) right now because of round 2 and as usual they're playing all their usual tricks on me.
Not everyone experiences side effects from IV steroid treatment, but the most common are:
  • Stomach irritation, such as indigestion and heartburn
  • Increased energy
  • Rapid heartbeat
  • Flushing of the face, neck, or chest
  • Feeling warm or cool
  • Retaining fluid (avoid table salt and salty foods)
  • Increased hunger / the munchies
  • Mood changes (euphoria, irritability, nervousness, restlessness) or mood swings
  • Metallic taste in the mouth (personally I think the taste is something like the smell of nail varnish remover but hey that could be the steroids)
  • Insomnia 
  • Nausea
  • Menstrual disruption (might be early or late)
CAVEAT - please read this next bit in the positive way that I mean it to be, it's not a 'negative' of treatment of a 'worsening' of MS - it simply 'Is' what steroids do to me, I know this, I expect this and want to share to help increase awareness xxx
My body temperature is currently completely controlled by the temperature of my feet (again) which is a great excuse for wearing flip flops (thongs to Southern Hemisphere readers) even if it does mean I subject the office to the sight of my unattractive 'Hobbit Feet'
My tummy feels 'off'. I don't feel sick or sore, it's more like an 'acid' sensation and that I'm ravenously 'hungry'. It's almost like if I just had a big meal it would be much happier. I had breakfast at 8:30 and I KNOW I'm not 'really' hungry -  so it's getting lots of water to 'trick it'.
My sleep is incredibly 'light' for want of a better word - if a mouse farts 3 streets away it wakes me up in the night and even though I drop off easily again it never quite seems to be 'all the way there'. 
As a result I'm quite tired and my balance is a little 'off', I feel quite 'weak' and as usual I have some sensory symptoms. I have numbness to the trunk of my body and in my left hand along with the 'shock' sensations which are extending through my whole hand.
These things are something I've become very familiar with over the last year, usually when I'm a raging hypocrite and completely overdo things knowing full well I'll pay a price for them.
Plenty of 'quality' sleep is the answer for this - of course thanks to the Evil Mr Steroid the 'quality' is the questionable part right now LOL.
Six days post round 2 and I actually feel really great despite what I've posted above. Yes I'm a bit tired, wobbly and could eat a scabby dog, but my head is in a really good place because I understand the 'why' part of it. I think it is really important to understand all of this not just the good and great that I've babbled on about for the last year.
The sun is shining, it's a beautiful day, my usual smile is ever present and I'm feeling on top of the world.

Monday 23 May 2016

Mid week 2:1 update

Apologies there have been no updates since Friday, I have kind of been caught up in that crazy old thing called life.
 I drove home from the hospital on Friday and then ❤Gareth took me out for dinner    We had a lovely mail at a little country pub. It was very quiet with great service and great food    Then I came home sat in the garden in the sunshine and had hugs with the dogs and a nice big glass of wine   I did forego my oxygen treatment on Saturday as I thought that I should probably have a lie in  and catch up on some sleep. It wasn't noisy in the hospital but I didn't sleep as much as I normally would   Saturday afternoon we already had plans to go to a barbecue it was my good friends introduction of the new baby boy Jasper to all their friends.  I have to say there is something pretty epic about a lady who gave birth 10 days ago hosting a party for 50 people. I had the most awesome snuggles with Jasper, I fed him but wimped out in changing (because I'm a complete novice and it's been nearly 18 years since I've changed a baby). He's so beautiful and I'm so very happy that L&D have their beautiful little man xxx
 On Sunday we put the dogs in kennels and got in the car and drove up to Halifax   Today has been Nana Mary's funeral both a sad day and the celebration of her life.  It's been lovely to see ❤Gareth's family and to see everyone enjoying each other but it's also terribly sad because Mary would be as mad as await him to have missed such a lovely gathering of family and friends as this one
 We are driving home tomorrow and then back to normality I'm in work on Wednesday and everything is good
 Treatment wise this is my update.

 I've had a little bit of a rash and on occasion a raging case oft he itchies.  Nothing that a dose of antihistamine doesn't sort out   As usual the steroids have turned me into a human volcano and my entire body's temperature needs to be controlled by the temperature of my feet.
 All in all I'm feeling pretty awesome I'm super confident that this is done what I wanted It to do. It has stopped my lesions from damaging my brain and spine any further. It has stopped new lesions from forming. It has also allowed my body to do what the human body does best, heal and repair.  My hopes for the future are so high,  and I truly hope that anyone else going through this treatment gets the results they hope for too.

Friday 20 May 2016

Round 2 Day 3 - The vanquishing of MS

So this is it - the last day of round 2 and I'm feeling really optimistic and full of energy.
Mentally I'm picturing myself in medieval costume with a sword in hand chopping the Dragon MonSter into the last little tiny pieces. Visualisation works so well for me mentally;  making a picture of it makes it more real and gives me a target to aim for (does that make sense or make me sound like a moron ?)
I've seen the Lovely Dr C this morning, I'm feeling thoroughly chastised as she commented that I 'Appear to have put weight on'. Of course she's right I've put on quite a bit of weight, and it's nothing to do with Lemtrada or MS, it's simply me over compensating for a heart-breaking year with Wine and rich food. I know this has to be addressed, I have my plan mentally prepared and we will get through the next week and then implement it.
On a completely silly and unrelated note I nearly asked for a dose of something to combat having a mild case of the squits ..... (I can't spell the D word even close enough that spell correct understands me) upon inspection of the bag of Sugar Free Mint Humbugs I've been using to combat steroid taste in my mouth there is a clearly written warning 'Excessive consumption may cause Laxative effect' .... MAY - MAY - it's taken me 3 days to eat an 80g bad - Hardly EXCESSIVE you absolute lying bastards.
Standard steroid reactions from me all the way through this, I'm now sitting here with my bare feet flat on the floor trying to leach some coolness into me. It looks like I'll be spending the summer in Flip Flops again to regulate my body temperature by ventilating my feel.
So anyway no more of those sweets for me - back to the mini cheddars - oh no can't eat those they have calories and after the Lovely Dr C's dressing down I'll have to pass on them too .... Dust that's it, Dust doesn't have calories - hospital's sparkly clean no dust - bugger.
Day 3 review
7:45 kick off this morning with the Steroids and Anti-histamine. By 9:30 I was plumbed into Lemtrada for the last time.
13:00 Lemtrada is all gone from the bag now it's just the saline flush baby and we're all done with this shizzle.
13:30 - all done
So long and thanks for all the fish as the dolphins said in Hitch Hickers Guide to the Galaxy ..... I just demolished your shitty little MS world with a Lemtrada Superhighway xxx

Thursday 19 May 2016

Round 2 - Day 2 it's all great !!!

Good morning from Sunny Hotel Southampton (or University Hospital Southampton as they call it)

I went to sleep at a reasonable time last night and slept really well the ward was nice and quiet, no disturbances in the night. Then at 06:30 the poor nurse came round with my acyclovir and put her hand on my shoulder to wake me. The involuntary reaction of my whole body bouncing about 3 inches into the air with a loud yelp nearly had her falling over. Oopsie - she'll remember that tomorrow morning.

I've declined the paracetamol this morning, I haven't got a headache (yet) and I'm nearly through my first half litre of water. I'm due back downstairs on C-Neuro at 8am so I'll pack up and head down I will add the day schedule and how it goes later xxx
Infusion update:
They did the steroids and anti histamine push but as they were changing to the Lemtrada I commented that the cannula in my hand felt a bit like tooth ache. They had a look at it and decided it needed to move. It's now in the back of my left hand for the remainder of round 2.
All quiet on the infusion front, steady blood pressure, pulse and temperature. I am more flushed today from the steroids but then that's not unusual. I did that on day 2 of round 1 (the nurses blamed it on the wine I'd had last time) I fee slightly vindicated that it's happened again this time and there hasn't been any wine! (no way was I risking the wrath of the MS nurse this time round - I was still stinging from the last time)
So another good nights sleep I hope then the final vanquish of the MonSter, after this because I'm having no other treatment for MS side effects. So fingers crossed, dance naked round a fairy ring, rub a magic lantern and just hope beyond all hope that I don't relapse again - ever!!
I will go home, go to sleep and dream and then on Saturday I will wake up and carry on living my dreams as I have been doing since just after round 1.
I will NEVER give up I will NEVER stop fighting this. This is a down and dirty battle of wills and I will continue to be more brutal to MS than it will ever be allowed to be to me. I don't fight fair I fight to win and this round is definitely mine!

Wednesday 18 May 2016

Round 2 Treatment Week Day 1

All checked in at Hotel Southampton again, lovely to see the team on the Wessex Neurological Ward again. The MS nurse who told me off last time is here today, the first thing she aske was if she asked should she check my bags for bottles of wine.
The saline has been pushed in, so have the Anti-Histamines and the Steroids are flowing. The good stuff will be arriving shortly. I've got the cannula in the side of my right arm this time rather than my hand or the curve of my elbow. It makes it so much easier to bend my arm and not be bothered by it.

I was having a full on flap last night before coming here. Gareth said I should share all the weird stuff that was going through my head so other people would know that it's 'normal' or so that everyone else would know I'm not in the slightest bit normal.

The little voice in my head kept saying silly things like 'it's already worked - if it 'aint broke don't fix it'  - 'what if the T&B cells grow back and they forget to be well behaved cells and come back badly behaved again' blah blah blah blah. The butterflies had mutated into line dancing elephants in my stomach. Even my usual permanent smile had disappeared, people kept asking what was wrong, was I okay (apparently me not smiling isn't something they see often) It was just me driving myself slightly mad with silliness as I did this time last year.

I arrived this morning happy, relaxed and ready to start all the butterflies have gone the smile is back and it's all good. I've got this! (told you I was being silly didn't I)

A recap again for how I was for Round 1 - this happened within 6 months of my diagnosis of Relapsing Remitting MS. I had 6 big relapses in 6 months which altered my physical ability but health wise apart from the physical problems I had no complaints at all. I don't have other ailments the only thing I had was me relapse symptoms. Coming in for round 2 once again I'm annoyingly healthy with no other issues and now I don't have MS symptoms any more either - please bear this in mind when comparing to yours or your loved ones starting position for treatment.

Round 2 Day 1 Schedule - unsurprisingly this is very much similar to round 1

Treatment -  Running Order:

  1. Admission and if they need to do any repeat testing they will do this first – Urine test – they’re making sure you aren’t pregnant again (Very important for the boys….)
  2. The Cannula gets put in for the infusions. It depends how easy you are to Cannula, and the policy of the hospital you’re in. This may be in your inner elbow, the back of your arm between your wrist and elbow, back of your hand or anywhere else random they like to stab people – it doesn’t really matter
  3. Anti-Viral Medication  - to keep away pesky stuff like Hepatitis, Thrush and if you’ve had chicken pox in your younger years then Shingles is a possibility as the virus remains in your spinal fluid then shingles is how it comes back
  4. Paracetamol – well I was given it at this point anyway
  5. Saline solution to flush the drip line (just a push with the syringe)
  6. IV anti-histamine (just a push with the syringe)
  7. Steroids  Drip bag on a stick thing takes 30-40 minutes depending on how quickly your veins slurp it up – Keep mints handy – IV Steroids leave what is described as a ‘metallic taste in your mouth’ personally I think it tastes like nail varnish remover smells but it goes when the infusion is over.
  8. Lemtrada – the good stuff – The drip is set up for a 4 hour controlled infusion – This can be slowed down if they you need it over a longer period – for the first 2 hours they will do OB’s (Observation’s) to monitor your Heart Rate, Blood Pressure and Temperature every 15 minutes to ensure you are doing well with it. After 2 hours they relaxed my OB’s to every 30 minutes for the last 2 hours then every hour for the next 4 hours.
  9. Saline solution to flush the drip line – this will be a drip infusion and will probably take 30 minutes to flush every last drop of the Lemtrada from the IV line into you
  10. Anti-Viral Medication  - to keep away pesky stuff like Hepatitis, Thrush and if you’ve had chicken pox in your younger years then Shingles is a possibility as the virus remains in your spinal fluid then shingles is how it comes back
I'm looking round the ward at 'the sick people' and quite honestly I feel like a bit of a fraud. What am I doing here taking up a bed ? I could have gone to a hotel tonight and let a person who's 'actually sick' have the bed - I keep suggesting it but they're not having it at all (possibly my fault after last year's 'wine incident')

Day 1 is in the books, my carefully regrown Lymphocytes are all being exploded and flushed out of my system. I have an attractive 'steroid glow' which is really as close to a tan as a freckled Ginger ever gets.

Round 2 so far has been easy, nothing untoward to report at all.

Good luck to all round 2'ers, and Round 1'rs be awesome and rock this xxxx

Monday 16 May 2016

Week 52 - 2 days until round 2

Less than  48 hours until I get plumbed in for round 2 now.
  • My water intake is where it should be
  • My vitamin levels are good
  • Super oxygenated red blood cells all ready to go
  • Overall health and well being is awesome
Time to start packing for my hospital stay. Thinking back to round 1 and things I wish I'd had with me etc. Packing this time will include:
  • Extra paracetamol just in case they haven't got that on the general schedule this time and the headache comes again.
  • Enough mini cheddars to keep me going though the steroid munchies. 
  • My trusty Solarcaine should the Lem-Rash shows itself again.
  • My Brita Water Filter bottle which holds 1ltr so I can monitor the water intake without lugging 9 litres of water into hospital with me.
  • My tech kit will be similar to last time to keep me amused, although I'm disturbed to realise how many apple devices I own with cracked screens these days. I really need to be less clumsy (wine related) I'm also gutted to discover Deadpool isn't available for download until next month, I would have loved being able to watch that again while I was being treated (although everyone would think I was a crazy person for laughing so hard)
  • Ear plugs and eye mask so I get some sleep.
  • Mints and Werthers Original to combat the Steroid taste in my mouth.
I've called hew hospital about parking concessions as I'm going to drive myself down there and back so the car will be there for 3 days (£16 a day to park there) apparently for inpatients like me there is a concession price for a week's parking £18 for a whole week YAY - I'll take that one please, so my advice for the day particularly if you're UK based is 'ask' - what's the worst they could do - say no ?
I think the set up has changed a little at Southampton as I'm 'day care' for treatment but overnight on E-Neuro which sounds a little untidy. I've volunteered to book into the travel lodge down the road if it's a problem with bed allocation.
We've had a lovely weekend, the weather has been fantastic and the dogs have had lovely walks in a new park area that they really do love. I had my oxygen treatment on Saturday morning at 33ft, and we were out with old friends on Saturday night for a long overdue catch up with the 'Bramley Crew'
On Sunday I bought 2 pairs of normal court shoes with heels - pretty ones not practical 'I can walk in these without wondering if they'll fall off or if I will fall off them' shoes. I'm officially out of the cowboy boots now and wearing 'girl shoes' again for the first time since 2011 and it's amazing just how much more confidence it gives me plus a huge sense of pride that I've come this far thanks to Lemtrada.
The 'Dead Mole' that was cryo-frozen off my forehead has now formed yet another scab which I'm desperately trying not to pick at (it's so tempting) and I'm so happy that it wasn't the scary thing that it was first thought to be.
EDIT : 2 hours on from when I typed this ^^^ I've picked it - oh damn but if felt good however I now feel very naughty. BAD TRACY
Panic stations once again for dog care while we are up North on Sunday / Monday / Tuesday for Nana Mary's funeral on Monday afternoon. Once again our regular kennel's are fully booked and I'm having a bit of a flap, especially since I'm out of commission for 3 days this week.
Despite being in for round 2 it's going to be a full on Hypocritical me week, Saturday we're going for a BBQ and to meet LBD who's now arrived in the world. Both Mummy and Jasper are home and doing well, so baby snuggles, travelling, sad goodbyes, treatment round 2, and whatever life throws in my direction.

I will do it all in my lovely new heels and everything will be okay because I won't tolerate it any other way.

Thursday 12 May 2016

Mid week 51 - Not so scary after all

I saw the dermatologist last night.
She wasn't comfortable that it had been identified as a BCC at all, after a close inspection of it she said it didn't look anything like a BCC and that it was a 'badly behaved mole' that really just needed to be left alone. She did however offer to cryogenically burn him off for 'peace of mind' which I accepted straight away.
This was a bit like choosing Lemtrada really, an easy choice to make - don't mess around, don't fight fair, fight to win - Die Moley Die!
The offending mole passed away at 17:45 yesterday, cryogenically killed with a squirt can.
Last night I looked like I had a big bee sting on my forehead, but this morning it's calmed down some and I have quite a 'cute' teardrop shaped burn mark on my forehead. It looks a little like when you're getting something out of the oven and you catch yourself on the hot shelf at the top. I think I can live with quite happily without resorting to 'fringe-ness' so it's all good in Tracy-World right now.
My MS team are happy that the offending Mole has been cryo-killed and Round 2 is happening on plan WOOHOO HAPPY DAYS xxx

Oh and YAY - my smear came back clean too

Monday 9 May 2016

Week 51 - Heartbroken again with a side order of scared

It's been another heart-breaking week in our family. Gareth's grandmother passed away Tuesday night / Wednesday morning. It was completely unexpected and has knocked the entire family for six, it particularly hard on Gareth's father who found her, and of course his Mum as Mary was her Mum.
We have been up in Halifax for a few days with them, just doing what we can to help and be there for the family. I can't describe how grateful we were that we had seen Nana Mary 10 days before and she was on fine form, we both had an opportunity to hug her and tell her we loved her.

This next bit is troublesome and 'may' be related to my lowered immune system
I also noticed over the weekend that I had a scabbed over part on my forehead in the same place again (4 times this has happened in the last month) for no reason. I've seen the doctor today and been urgently referred to a dermatologist with a suspected BCC - Basel Cell Carcinoma. Yes that word has the connotations you're thinking of, but it's very low risk, it can burnt off with icy stuff and I'm already booked to see the specialist on Wednesday evening. From what I understand (damn you Dr F***ing Google) it will be biopsied and removed leaving me with a reasonable scar on the side of my forehead.
My Doctor doesn't think it would be a 'blocker' to having round 2 next week at all, I have however informed my MS nurse who in turn is informing Dr C of what's happening. It's not exactly something I can hide - a big scar on my head really is it ?
although ......
Perhaps it's time to consider a 'fringe' again to cover it up (I look REALLY terrible with a fringe) (PS that's 'Bangs' to American readers) this may necessitate a complete restyle of the barnet to hide 'fringe-ness' something short haired and pixie like maybe (see the project manager is taking over and mitigating risk already)

Anyway back to the weeks updates:
I now have my new Car/Van and it's lovely, it was sad to see the Peugeot go, it was the car my mum gave me just before she died, but it really was in one heck of a state. Gareth is now waiting for his new car to be ready on Wednesday. Boys need to have new toys especially when someone else got a nice one.
It's been lovely over the weekend but we didn't get round to  BBQ as a result of time constraints and it's now pretty grey and chilly - I fear we might have blinked and missed the British Summer.
My friend was induced last Thursday, and it's now Monday, Little Baby D still hasn't appeared. Sending you my love Mr and Mrs D, thinking of you xxx

Tuesday 3 May 2016

Week 50 - 15 days remaining until round 2

Well that's been an action packed Bank Holiday weekend.
I would say I've come back to work for a rest, but it's been manic here at work this morning so far too. So busy at the start of the month with the monthly reporting, catching up on emails and just generally running round like a scalded cat.
The trip up to Knowle went really well, despite my little car developing the old 'anti-pollution system faulty' thing again. it played up for most of the day which added some excitement and uncertainty to the whole affair.
The 'Oldies Football Match and disco' raised a lot of money for the military charity Help For Hero's. The Over 50's team beat the Over 40's team with calls of 'ringers' and 'plants' being put into their team. It was great to catch up with my Sister-In-Law and all our friends, I even got to catch up with a load of people I haven't seen since I left School 28 years ago. Far too much wine was consumed, I danced until my feet hurt to lots of classics from the 1980's.I wasn't brave enough to try all that in my heels and opted for the safety of flats for the evening do. All in all despite a few bruises and sore feet I held my own and didn't run out of energy - so take that MS
The pup's seemed to enjoy their overnight stay at the kennels although I don't know if she got to meet her dad. They also got to meet my 'acquired' Niece for the first time (actually it was Gareth's first time meeting her too which at the age of 9 is somewhat overdue)
We had an uneventful drive home and I went out to look at car's having decided that Little Car's time is pretty much done. I have spent the best part of a year looking at 4x4 / Crossover type cars because I like the driving position and the space and dithering over making a decision. I had decided that a brand new car was not an option and I needed to rein my expectations in a little. Then I saw the Ford Tourneo - it's an MPV - a Van which has been 'tricked out' as a car. It is shiny and brand new, has enough space for a dog crate to be permanently assembled in the boot. It has all the gadgets and gizmo's on my 'required toys' list with the exception of heated leather seats. So I booked a test drive for Monday lunch time thinking that if I like it I can get a 1/2 year old one for a bargain price.
We had a quiet night on Sunday to recover a little from all the activity then Monday dawned. I woke up at stupid o'clock I was so excited about the test drive. We took turns driving the car (van) and both loved the way the car (Van) handled and felt. By the time we got back to the dealer I'd already decided if I could get the payments to the terms I wanted it was mine - damned if they didn't manage it too. We collect my new (very large) baby on Saturday. OOOPSIE - BAD TRACY LOL
Monday evening brought what in Gareth's opinion was the most important football game of his lifetime. His beloved Tottenham Hotspur had to beat Chelsea in order to still be in with a chance of winning the Premier League. In reality Leicester have had it sewn up for weeks they were too far ahead and were never going to lose all their remaining games and give Spur's a chance but optimism in the face of overwhelming odds is something all sports fans feel. Spurs didn't win !!! Leicester won the title be default and I suspect all of Leicester has a very poorly head this morning. A magnificent achievement and one of the most interesting and exciting seasons in decades.
Despite a busy and active weekend, MS wise I'm feeling really great if a little battered and bruised in places but that's not MS, it's just partying too hard and not taking better care of myself.
15 days from now I should be nearing the end of Round 2 Day 1 I've still had nothing in writing from Southampton Hospital to confirm it, this is the only thing that's a big EEEK for me right now. I'm assuming all instructions are the same as round 1 and am preparing on that basis.
I'm not prearranging working from home this time, nor am I doing the whole 'quarantine chamber' thing I did last year. Everyone knows what's happening at work and remembers the drill from last year - stay away if you're not well. I'm going to hand out bottles of Anti-Bacterial gel to everyone in advance as a reminder, the plan this time is to carry on as normal.
Just one EEEK - come one Southampton, sort it out please.
Off home now to start cleaning out my car, it's a bit of a skip on wheels so it's probably going to take all week!

Far too long between updates (again)

 So what have I been up to in my long absence and how have I been ? Well the Crohn's is under control and back to how it's always be...