Saturday 30 May 2015

MS and Lemtrada fine .... Otherwise devastated and heartbroken

At 10:45am UK  time my younger brother passed away at the ago of 40.

I'm in bits and trying to hold everything together. So i can't promise to keep this properly updated for a little while.

In the last 24 hours I've spent a lot of time at Heartlands Hospital Birmingham wearing a mask, gown, gloves and covering myself every 15 minutes or so in the antibacterial gel on every piece of exposed skin. The hospital freaked when I told them about the treatment last week and no immune system and and my response was 'try to get rid of me - it's MY risk to take'

The MS isn't bothering me, no fatigue other than emotional exhaustion and no other bits and pieces. 

I was there until Ian's last breath, and dear god it hurts so much.

So apologies if my updates are not regular ..... But if my precautions work and it can help others before / during and after Lemtrada with how to carry on ( or not be so bloody careless) then so be it. 

Love, best wishes, hope and a bucket load of tears

Rest In Peace Ian, I hope you are with Mum and Dad again, I will love you always xxxx

Tracy xxx




Thursday 28 May 2015

Another day of feeling good

I'm still needing to take a dose of anti-histamines each day or the itchies come back in my hands but so far post Lemtrada remains completely uneventful and as I had hoped it would be. Other May 18th Lemmies are reporting fatigue, and some of the May 11th Lemmies are reporting some hair loss being experienced - I'm not overly concerned about that to be honest, I have masses of hair and I've always shed like a moulting hound and if my head looks like a boiled egg or a Mr Potato Head with glasses on so be it - not stopping MS dead in it's tracks scared me far more than anything like this.


Looking forward to going back to work next week, as much as I love the dogs dearly, their conversational skills frankly suck and their Coffee making skills are even worse, and Amber-Dog snores so loudly on the sofa next to me that everyone keeps asking have I nodded off on conference calls :-)


I'm comfortable with my own company, but would like a little more variety :-)


My husband as always is incredibly supportive and a complete rock .......... ROCK I said .... ROCK !!!! :-) It probably helps that he openly acknowledges that I'm as mad as a box of hot frogs and that's not a bad thing (mostly)


4 viewings in the space of an hour on our house tonight .... YIKES ..... this looks like it's actually going to happen for real :-)


Love and hugs (to the non germy amongst you) xxx

Wednesday 27 May 2015

5 days after treatment

I had to take another dose of Anti-histamine last night, randomly my hands were really really itchy, no rash to see but itchy hands. It's left me feeling quite dopey today but then they're certainly the 'drowsy type' - probably why I slept so well in hospital last week :-)


Apart from the itchies, I feel great, no aches, my balance is certainly no worse than it usually is for a clumsy girl. Spaghetti leg hasn't been a problem recently which makes me a happy girl :-)


Very glad I got my oxygen top up yesterday, even if all it's done is give me peace of mind :-)


In other news, viewings of the house are booking up quickly, we are very hopeful of accepting an offer by the end of the week. The cottage is still an option, but we are also viewing a couple of places in Oakley on Saturday morning which both be possibilities as well.



Tuesday 26 May 2015

4 days later

Hi all, it's been a few days, I took some time to settle back into normal life, the long weekend, some gardening, some getting the house ready for sale and some R&R .... With wine of course.

I have not suffered any of the fatigue that others have reported post treatment, but then I did sleep well in hospital (MS Fatigue means I can sleep anywhere anytime at the drop of a hat) I'm taking all my vitamins and minerals again and posting from the oxygen chamber right now. I suspect that the feeling good is a side effect of 3 days of IV Steroids and is a temporary thing, in the past about a week after IV Steroids I've had what I call 'the steroid crash' where all of a sudden my energy drains, everything hurst and the fog is worse than ever, so some yummy yummy oxygen will hopefully mitigate that crash.

I've been walking and doing everything I normally would and it hasn't been noticeably easier or harder and plays the glad game,no worse works perfectly for me.

I'm working from home today and the rest of this week then back into the office next Monday to my 'plague free room' I'm sure the novelty of waving at people through glass won't last long but it's for my own good, and Alan and Dave my two desk neighbours are always full of colds .... The joys of having kids :-)

Life without an immune system is as life was with one, but I'm very wary of anyone who looks sick, coughs, sneezes or clears their throat :-)

More updates to follow, especially after this oxygen chamber as I hope to leave here feeling epic and revitalised

Love and air kisses to you all but no hugs you Germy people xxxx

Saturday 23 May 2015

So how's it going?

Today should have been exhausting but it's been okay. My legs started to give out between the DIY store and the supermarket but Gareth was great with it. I didn't wear a mask I'm taking my meds and its okay. Strangely I expected to feel really different but I don't I'm just me and I like that very much :-)

Tomorrow involved painting probably more supervising than doing if I'm honest but you have to play to your skill set :-)

Today's remodel of the lounge has been great and I'm pretty sure the next viewing the house will be sold, we just need to find somewhere to buy now before we end up, homeless :-)

First day back home

Woke up this morning and felt great no more rash, no headache no fatigue or aching I felt like me. I know it's the steroids at work not the miracle of lemtrada yet, but I will take that

We have spent today doing bits to the house so it will sell more quickly, a bit of shopping and we are just now relaxing in the garden with a cocktail and just chilling out.

The dogs are glued to me, although the Jack Russell does seem a bit obsessed with sniffing the places where the infusion was plumbed in and he looks at me as if to say 'you smell strange Mummy' the cats are far too cool to even acknowledge I've not been here :-)

I am booked in for oxygen therapy Tuesday and Friday next week. Time to kick start the super healing red blood cells into action so that they can help with general repairs and maintenance of me :-)

Day one of the rest of my life has so far been a resounding success long may it continue.

Love and warm thoughts to you all xxxx

Friday 22 May 2015

Home again

Stopped for some yummy food on the way,,glass of wine on the go, feeling awesome and so very proud that I've done this. Updates will continue with the usual irreverence and random life stuff thrown in.

I've had dog snuggles, husband snuggles, the cats of f course don't care at all unless I'm holding a food bag but that's fine.

Much love and best wishes to everyone how has done this, is considering doing this or is just curious about it.

Thank you all for your support best wishes and forebearance with my rubbish blog style, 2000+ views and I thank everyone out there xxxx

And I'm done .... Immune system squished !!!!

Feeling great no new rash today.

Home for a celebratory glass of wine methinks

Day 5 treatment log - the end is nigh

All ready for today, here's hoping they can start early and get me out of here at a decent time.

Still feeling great thanks to last nights extra shot of anti histamines updates to follow, good luck everyone xxxx


10:17 - BOO :-( - no new canular put in yet, treatment not started :-( ..... it's gonna be a long one
10:30 - replacement canular went in but the vein bulged ..... The world went grey and swirly and I got a raging case of the sweats ..... Drinking water and trying again shortly xx
11:10 - no restart yet :-(
11:35 - cannula in 3rd time lucky
11:40: - all plumbed in IV Anti-histamine done, Lemtrada no5 coming down the pipe. time to finish his bad boy off :-)
15:40 - AND I'M DONE !!!!! 5 lots of Lemtrada completed !!!! Flush me quick !!!!


I think I'm going to get a T-Shirt printed up for this ....

Thursday 21 May 2015

Day 4 Treatment Log

No head pain today. Brief appearance of Lemtrada rash yesterday on my arms which I treated by using Solarcaine which took the itch down in a out 45 seconds and the Aloe Vera did the rest making it disappear. I can see the rash trying to come back but I am reapplying to my whole body regularly. Had a couple of big patches appear this morning on by ass checks but that's gone now thank goodness so no inappropriate scratching :-)

No IV Lemtrada or anti-histamine yet so will start adding those shortly I hope

Happy day 4  - I am feeling great :-)
10:55 - IV Anti-histamine done ... I'll expecting a pensioners nap again this afternoon - that stuff really does the whammy on me


11am - Lemtrada started :-) bye bye another 20% of my defective immune system :-)
12:20 - just a quick WOOHOO about my blood pressure - holding steady between 140 and 150 over 80 ...... go blood pressure :-)
14:20 - 39 minutes left to go, blood pressure doing great, no headache to speak of no more rash either. Can't wait to get up and go for a wander around
18:00 - may the fleas of a thousand camels infest you. Lem rash everywhere. And I do mean everywhere. I could happily have clawed every inch of skin off my body despite the calming of the solarcaine. An extra shot of IV Anit-histamine and it was a miracle RELIEF was almost instant. Needless to say I slept like a baby all night and now feeling great all ready for day 5 immune system nearly squished

Good luck everyone xxxx

Wednesday 20 May 2015

Day 3 Treatment log

I have been told off by the MS nurse this morning who's doing my Lemtrada because I had 2 glasses of white wine last night ... BAD TRACY - I'm feeling thoroughly chastised but not repentent if I'm honest - the other half of the bottle is in my cupboard and I haven't 'fessed up to that. My good friend JoJo is visiting later with a large stash of Mini Chedders - I'm craving salty things like mad - probably the steroids.


10:00 - Steroid drip (later this morning as they wanted a urine sample before they started - probably to check I wasn't over the limit)
11:00 - Anti-histhamine - not IV this time but it was benadryl so I'm expecting to have a pensioners nap later :-)
11:36 - Lemtrada 3 plumbed in here we go - 4 hours of the good stuff then anoher 30 minutes of th eline being flushed
15:45 - I've asked for some more paracetamol as the head spike is returning, apart from thsat it's a pretty uneventful infusion.27 minutes remaining on thi one and the anti-histhamine hasn't sent me to sleep yet :-)
15:36 - 3rd lot of Lemtrada done and flushing the lines with saline again for 30 minutes
18:00 - I lave Lem-rash .... Never thought I would feel excited to see an ugly itchy rash on my arm but I am. Applied Solarcaine and the itch was gone in about 45 seconds :-) it's still ugly but not itchy :-)


As usual I can report no symptoms or side effects other than the head spike at this time and Paracetamol is keeping that nicely under control.


Immune System will be 60% squished after this .... that means I'm officially on the winning team


Will update this as the day progresses


Happy hump day everyone, hope you have a great day xxx

Tuesday 19 May 2015

Day 2 Treatment log

07:30 - 2 500mg Anadin Parcetamol as the head spike was back when I woke up :-)






08:30 - Time for Steroid Drip (30 Mins) 1g of Metilprednisolone nice early one this morning :-). Awaiting confirmation that the IV Antihistamines will be done next and the pesky Genzyme Rep to ask why the pain killers for the headache are not in the standard protocol :-)








10:30  - IV Antihistamine adminstered Chlorphenamine 10mg.
10:35 -  Lemtrada plugged in 4 hours of the good stuff here goes another 20% of my immune system :-)


11:30 - Paracetamol arrived on time and head spike averted :-)
13:00 - Cyclozine (anti sickness) taken indeterminate dosage
14:30 - Lemtrada done, line flush time to get every last drop of the good stuff gets in
17:00 - More Paracetamol as the head spike was trying to make a return


Blood pressure and heart rate have been really steady and normal today where as yesterday hey were a bit up and down, but then I did put an offer in on a house yesterday (which I expected to be rejected and it was) ours goes on the market today the valuation is happening right now as I type and I'm putting another offer in later of another 10k on top of the initial offer which I'm more optimistic will be accepted. Funnily enough every time I talk about it my BP goes through the roof :-) nothing like multi tasking. I've got loads of work done today (around my post antihistamine snooze - it's good stuff)


I'm feeling really good, no fatigue no exacerbation's of current MS symptoms making it look like another relapse. The lovely Dr Halfpennny came for a visit earlier, and the nurse who's the specialist here gave me the business card of someone looking into Lemtrada as treatment for a chat - Hi Nick hope I've not bored you to tears :-)


All things considered this is amazingly uneventful and going really well, I'm almost looking forward to the rash so I can 'SEE' it working it's way through me. All that prep seems to be paying off


Good luck and much love to Lemmies everywhere xxx

Treatment Day 1

So here we go - day 1 in deail


Arrived at 10am, I've moved around a bit while they take a last minute blood test (not got AIDS - YAY) lst minute pee test (not pregnant)


!2:30 - Canuler is in, IV anti Histhamines straight in and Steroids hooked up - must ask what the Anti-H was ... good stuff in that, it's not like me to take a pensioners nap sitting upright in a hospital chair but it knocked me out during the Steroids were done
13:30 - Steroids done, I'm on the foxes glacier mints already to combat the metalic / nail varnish remove taste in my mouth.
15:35 - Lemtrada starts 4 hour infusion at 25ml and hour. Side effects : Headache ... the nasty railroad spike in the head variety, apparently they don't have a perscription to give me any after the dose with the Steroids so I solved that problem with a trip downstairs to WSmith for a packet of Anadin Paracetamol ad thye're noting what I'm self administering. There's a GENZYME Rep here 'supervising' my treatment but not allowed to 'befriend me' - todays rep probably won't want to befriend me when I point out that if their instructions for administration and care treatment don't include this they're crap and need to address it ASAP.Blood presure was up and down all afternoon and evening but heatrate stayed pretty constant.
19:35 - all cooked on the Lemtrada front, quick saline flush to get every last drop out od the line and then freedom.


So far no real exacerbaation of relape symptoms as a result of treatment though it's a little ominous that they've left a walker at the end of my bed (hopefully not a sign of what they're expecting)


Must ask more questions today about Anti-H and steriods, how much what is it etc. Tina has asked could I get hold of one of the Lemtrada bottles - they're so very tiny for £7,000 of mediction but they do say good things come in small packages.


I slept really well last night once I actually decided to sleep so this morning I'm bright eyed and bushy tailed - as aopposed to bushy eye's and a bright tail :-)


Today looks like more blood pressure fluctuations and possibly heart rate ones based on everyone elses experiences - I will keep you ll infomrned


Sun is shining through the windows and first conference call of the day in 12 minutes - it's all good, my immune system is 20% squished, hope you're all good xxx

Monday 18 May 2015

Day 1 done

 All good so far .

 Only one side effect.  The headache that's a nasty one it feels a little like a railroad spike is being pushed into your head    They didn't have a prescription for paracetamol so I went to WHSmith and bought some myself they know about it but the headache has now gone  

 Sleep time soon then day 2. BRING IT ON

Sunday 17 May 2015

Check in at 'Hotel southampton' in the morning

It's so close now, I am all packed apart from my toothbrush (chances of me forgetting that in the morning are very high)

My IT kit is all sorted, they're going to think I've robbed a PC World when I pitch up with 2 iPhones, 2 iPads and my laptop. I've downloaded series 2 of game of thrones to keep me amused, I've got half a dozen new books on my iPad kindle app and of course 3 of those Apple devices all have 4 versions of candy crush saga at various levels on so that will kill plenty of hours.

Right now my butterflies seem to be doing the conga energetically but it's not about the treatment it's more worry that when I call at 08:00 they'll tell me the bed isn't available and after all this time it will be back to the waiting game. Gareth says I'm worrying unnecessarily but I can't help it, too many people have had just that happen on admission day.


We have had a lovely day, a bit of shopping and then Pizza Sunday at The Pot Kiln in Yattendon with very dear friends of ours. Strangely conversation went along the 'so what would we all do in our post zombie apocalypse world' I'm okay with blood and guts so I get to patch people up with a side line of being 'the brewer' ensuring that we still have wine and beer in the post apocalyptic world - probably the best use of my skills as I'm definitely built for comfort not speed so running round saving people and defeating zombie hoards is probably just a little out of my skill set.

I'm sitting here flapping a bit wondering what I've forgotten, I keep going through my mental lists and everything is there, it's all done - allegedly.

I haven't updated my James Bond updates from last weeks Lemmies yet, I will do that tomorrow at some point, D and G both finished on time, H had some problems on day 5 and has had to stay in over the weekend hopefully it will all be finished up tomorrow and she will be home again.

Much love to all readers, hope Monday is a great day for us all xxx

Friday 15 May 2015

Updates from this week's Lemmies



There are 3 lovely ladies in the group I use so I'm gong to pop each of their updates in here


H - Day 3
Day 3 of lemtrada done and over with!! No rashes so far but expecting it tomorrow. If u do t get one I'll be the only person at this hospital never to have got it. Not expecting miracles but might be nice to break the mould! 2 more days to go. Feeling very tired today. x Yay hump day is over for us!! Only two more days and hopefully no more steroids. They're making me mega hungry and my blood sugar is sky high because of it. Don't suppose you're getting this problem?! x
H - Day 4 - Rash Day
Mine came on today (day 4) approx 5 mins after my flush. Common apparently and all has gone now. Boy, was it itchy!!! xxx it was literally everywhere even my face swelled up


D-Day 1
Day 1 done. Finished two hours ago and feel fine. Bit tired but then I didn't sleep well last night. Pulse was a bit high but nothing to worry about. SO glad to get that over with! Thanks for all your support - great to know you are all the rooting for me xxxx
D- Day 2
Day 2 - all done! Feel absolutely fine and my pulse was loads better. Nearly half way and SO pleased to be doing it - it feels right! 😊
D - Day 3
Day 3. All ok - got the rash 3 hours in but one Piriton later and it's gone! Feel absolutely fine. Bit nervous about not having the steroid tomorrow but I'm sure it'll be fine. More than halfway
D-Day 4 - Rash Day
I had the rash today!! Yuk! Really itchy and blotchy! Nearly gone now - might need steroids tomorrow. Was told I looked like a Dr Who creature




G - day 1
Day 1 done. Everything is going ok. Had a headache which a paracetamol fixed. Felt exhausted hour and a half into my treatment but i had a little kip and felt fine again.
High heart rate and low blood pressure but everything seems ok. Hope I will sleep tonight.
Onwards and upwards to tomorrow. x

G - day 2
Day two done. Going well. Sailed though it easier today than yesterday. No headache and no tiredness.
Looking a bit flushed tonight though. Can't decide if its a rash starting or am i just red in the face. Got Eurax ready. Should i put it on now just in case as its not itching?



So this is what I will be expecting and preparing for next week, change in heart rate, elevated blood sugars blood pressure dropping and of course rash day - bring it on


Lemmie's united - together we are kicking MS in the nuts :-)

Wednesday 13 May 2015

5 days to go

BRING IT ON !!!

I had another trip to the hospital yesterday with more bloods taken, ITP Baseline test before treatment starts and reassuringly they're going to tell me I don't have Hepatitis or AIDS which will be reassuring :-)


I also have my paperwork for admission with copies of my consent form and instructions from my lovely MS nurse to not try to be Wonder Woman and to take it easy and be kind to myself next week and in the coming weeks (she knows me to well and that I will just carry on as normal right up to the point where I fall flat on my back)


I have been talking via t'interwebs with a lovely lady who for the purposes of the blog we will call H - like a James Bond character 😀 - who is having Lemtrada this week in Surrey and getting a 'blow by blow' of whats happening. She has given her permission to me to publish her week on here as a 'this is what my week might be like next week'


Monday - Day 1
Bring boiled sweets or mints. The Steroids and Lemtrada make for a nasty taste in the mouth. Also a
selection of things to drink,
Blood pressure etc being taken every 30 minutes and no rash by the end of day 1


H update:  I've got juice beside my bed and I can't drink it. It tastes awful. I would usually love it!
She also had a headache which started later on in the day


Tuesday - Day 2
H is getting both oral and inline Antihistamine which should help with the rash. Blood pressure checks continuing every 30 minutes.

H update : Hello. No headache today but I'm very tired. Slept all through my infusion nearly. No rash so far. Expected overnight / tomorrow. All be worth it. I've slept all the way through mine today. Blood sugar has been high today so they've still allowed me to have the infusion but ice cream is sadly off the menu and no more sweets x

So my preparation list came into existence off the back of these conversations. I've also added my own 'secret remedy' to it for the rash. There's a product called Solarcaine which I've always bought in the USA, it's a burn gel - Aloe Vera Gel with Lidocaine in it. It's great for burns, sun burn and as I discovered as an adult when I finally got it at the ripe old age of 32 - Chicken Pox - no itching, no irritation just very ugly pox all over my body. I had no scarring at all because I never scratched. A bottle arrives tomorrow from those nice people at Amazon and goes into my essentials kit bag.

I've had a little foot drop this morning in my right leg ...... :-( that's a first I'm used to it in my left leg but it's never happened with the right one until today, I nearly threw a cup of coffee in my face recovering from the stumble but didn't fall and use my face as a brake so I am playing the glad game - I'm glad I didn't spectacularly go splat :-)

My water consumption yesterday was good and in line with my planned levels. My cog-fog today is a little worse than I had expected it to be after a recent oxygen treatment but then I had gone 10 days with the holiday so I think I need to get myself back to fully topped up levels again - roll on Friday when I get one in Oxford :-) I'm wondering if I could sneak out between infusions and get a top up next week at Solent (see previous comments about not being to hard on myself and pushing too hard .... yes I'm an idiot, but at least I know I'm an idiot :-)   )

The sun is shining and it's a beautiful day I am smiling and positive it's all good :-)

Happy day everyone xxx





Monday 11 May 2015

Infustion week preparation list

To summarise the advice and recommendations of people who have received or are currently receiving Lemtrada the essentials list is as follows :


  • Water - 3 / 4 litres of it a day - this should be started at least a week beforehand to allow your body to get over the shock of having that much (non alcoholic) liquid put into it in a short space of time
  • Choices of drinks - lots of water based drinks (No Tea and Coffee don't count) Try mineral water with some lemon or lime juice and a little low calorie sweetener in it of sugar free squash - some Lemmies have reported changes to taste buds during treatment (again can be Lem or Steroid related) where things that they usually would love are horrible so make sure you have a choice.
  • Mints or Boiled sweets - the steroids and / or Lemtrada can leave a horrible taste in your mouth during and after treatment so get a selection of things to keep this at bay (as per above take a selection in case you're off your favourite treat for a little while)
  • Anti-histamines - just have them handy in event of experiencing the Lem-Rash - obviously don't start munching them without telling the medical team in case they give you some too
  • Paracetamol - Lots of people report head aches during the treatment so be prepared, expect it and make sure that your medical team either provide it or make a note that you've had it.
  • EURAX Cream - to help if the Lem-Rash does appear, lots of positive comments from people who have used it and it's positive effects on the rash
Hope this helps :-) xxx

Results from the Cambridge Trials for Lemtrada

To give credit where it's due again, the results published from the Cambridge trials for Lemtrada give even more reason to hope that by having my Lemtrada treatment I'm taking another step closer to kicking MS soundly up the arse and sending it away to lick it's wounds for a long long time xx





1 week to go

1 week to treatment - blimey that came around quick


I feel like I should be scared or nervous of next Monday, but to be honest despite a few badly behaved butterflies I'm feeling excited more than anything. I am so very ready to pick up my sword and do battle with this rubbish illness on my own terms.


Portugal was awesome and I'm hoping that we can repeat last week again next year before my second batch of treatment, perhaps this time with some friends joining us.


I hadn't had an oxygen treatment last week and by Saturday afternoon I was pretty flattened. I hadn't had the forethought to actually book some for when I got home before I left so this morning I had a call around and the nice people at the Swindon MS Therapy centre - http://www.msswindon.org.uk/ -  had a seat for my on the 11:30 departure for Majorca at 33ft so a quick trip up the M4 and I'm already well on the way to feeling epic again.


I found a new article today with the retreatment and progression statistics for the Cambridge trial groups for Lemtrada and am very inspired by their results.


http://www.ncbi.nlm.nih.gov/pubmed/24849515


I'm optimistic for the future and having it on my own terms rather than at the dictate of the MonSter. I'm off for my last gas chamber before Lemtrada on Friday 33ft in the Oxford MS Therapy Centre - http://www.omstc.org/ - for one last top up. I suppose I should start booking my post Lemtrada sessions now so that I don't have to trek up and down the M4 and A34 after treatment to get myself gassed.


The dogs and cats pretty much mugged us when we got home, they are definitely happy to have their peoples back again and be in their own home - I suspect I'll get the same reception at the end of next week when I come home minus my pesky immune system :-)


Happy Monday ladies and Gentlemen, have a great one xxx

Thursday 7 May 2015

Ola from sunny Portugal - 11 days to go

Been offline for a few days enjoying the sunshine, food and wine of the beautiful Algarve. It was a great decision to get away for a few days of rest and relaxation before I start Lemtrada.

We booked the most amazing villa, the driveway is massive when we first drove through the gated entrance we thought we might have made a mistake and booked something more 'resort' like than the rural hideaway we wanted, so wrong ..... The house is enormous and so beautiful, the pool is huge, the pool table is great quality and we have yet to use the jacuzzi but I think tonight is the night for that.

I had my last oxygen treatment last Friday and so far I'm not too bad, a little tired and achy but not back to feeling like an old lady. I've done a few laps in the pool but not too many to wear myself out. The sunshine really does make me feel energised and miracle of miracles I even have a bit of a tan which for those who know me is highly unusual .... Red hair green eyes and freckles do not mix well with sunshine even wearing factor 50 sun screen

Tomorrow is our last day and for some excitement re are going on a 2 hour quad bike tour in the morning. I've never been on one before so I'm hoping it's great fun.

We decided against the dolphin cruise on a lifeboat as its 4 hours out in the sun and apparently as bumpy as hell, the same with the horse riding on the beach, cantering through the surf is one of the things on my bucket list, but there will be another time when we can do that after my treatment is done don't want to fall off and break something they might need to put a canular in :-)

Only 11 days to go now, the butterflies are quietly enjoying the sun. It all seems quite surreal that on Monday I go into work for one week before I go into hospital.. I'm drinking lots of water now and my body is used to it, no more revolving door to the bathroom required.

Hope everyone is well
xxx


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...