For all those ER and Casualty fans out there

This morning the docs decided that the Hickman Line had to come out because they think that is the cause of the infection. Had a nice day with the in-laws but then it all went to pot; the doctor arrived with her trolley of suspicious looking tools and started the procedure of removing my Hickman Line. Don't worry she said "it will only take about 15mins and won't be painful!" Well I had my mate Lin next door doing an impression of Darth Vadar (she was blowing into a tube) and I couldn't stop giggling, not good when someone wants to cut your chest open. Anyway an hour later, after emergency platelets and a blood transfusion, the damn thing eventually came out! You know me I like to cause trouble!
Oh well lets hope tomorrow is a better day and they leave me alone for a bit. I will have to stop typing now because I have a tube sticking out my arm and it means I can only type one handed and I can't be bothered with that.
Take care allLove Sarah xxx

11 weeks and still counting!

Been in hospital since Sunday night and have moved wards again, I have stayed on practically every one here now, so I am well known. I have been at Barts now for over 11 weeks and have only spent 12 days of those at home. I can not believe how I have managed it but somehow I find strength from somewhere everyday to continue this long journey. I have moved into a bed next to my friend Lin, she lives in Shoebury and we both have the same type of Leukaemia and have become very good friends. Everyone else on the ward better watch out we will probably drive them mad with our constant chattering. I keep spiking a temperature and they don't know what is wrong with me, it might be an infected Hickman Line, for those of you who don't know what that is, its the line that comes out of my chest where they administer all of the drugs and take bloods from it (http://en.wikipedia.org/wiki/Hickman_line). It will be annoying if it is infected as it will mean that I will have to have constant needles in my arm but if it is infected then out it comes as I don't want to delay my trip home any longer than I have to. I am on Day 14 now and they don't reckon my counts will come up until at least Day 21 so it looks like I have to spend at least another week here!!
I spoke to the girls on the phone this morning, Natasha was saying Mama, it was so sweet but of course by the time I came off the phone I was in tears. I miss them so much it hurts. Its the hardest thing to deal with in all of this and sometimes I think its so unfair that I am being taken away from them, but I know its not forever and I will be home before I know it and all this will be a distant memory, but a very raw one which I know is going to take a long time to get over.
My family have been incredible throughout all of this and the love and support that they show every day shows no bounds. I have become even closer to my lovely Sister-in-law (sozzle sister) Helen who has been a power of strength to me, she manages to put a smile on my face every day no matter how low I am feeling, so thanks Sis! Sorry for getting all soppy! And thank you to all my friends that continue to cheer me up with texts, emails, phone calls and visits, you know who you are and I love you all so much and will be eternally grateful, its times like this when you find out who your real friends are and god forbid if anyone of you had to go through something like this I would be there for you 100%.
OK enough of all this soppy stuff, I better have a chat with my lovely hubby who I have been ignoring since he got here. I only want him for his laptop!
Take care allLots of loveSarah xxx

An almost perfect weekend

Saturday : Start the day with an English breakfast and finish it with Steak and a glass of wine, days dont get much better than that for canivore wine lovers in London, then throw in a couple of fixes of caffeine and you find yourself rolling around London. That is what we did; after so many weeks out and about in the City of London we seem to frequent our regular haunts that we are becoming accustomed to the traits of "locals".We even took a stroll down Hatton Gardens but thankfully Sarah was just content with window shopping as we both marvelled at the idea that anyone could buy a diamond ring for over £10K and then even feel comfortable wearing it.There was also a bike event held in Smithfield: The Smithfield Nocturne (http://www.smithfieldnocturne.co.uk/), helping to raise awareness for the Tour de France that begins in London in a couple of weeks.
Sunday and the girls came up, and the heavens opened! Sarah's platelet count was low so she received a bag later in the day. Back to Wetherspoons where the girls enjoyed their roast dinner and then off down to St Pauls and their regular fix of "CAKE!" in Starbucks - the weekend was spend going from pub - Starbucks - hospital. Unfortunately, that is where Sarah's weekend finished: back on Lawrence Ward. When she returned for her evening obs she spiked a temperature of 37.9c and the doctors took the decision to admit her to the ward. In truth Sarah had been feeling a little bit unwell during the day but the attention of Abigail and Natasha had taken her mind momentarily off how she felt. So, some antibiotics were given in her Hickman Line and Sarah was sent for a chest x-ray. Hopefully if Sarah has an infection then they have caught it early and she wont be laid down for too long. Oh well back in hospital but at least Sarah ate well the last two days and the Wetherspoon/Starbuck shareholders welcome a speedy recovery as they end their Q2 reports.

Down the Battleship again....

Me again, had another good day today, spent 4 hours of it hanging out in the pub with my Mum and Brother. There isn't much else to do is there! Lovely Mummy was getting tipsy on 3 large glasses of wine and Brother dear was mixing it with beer, cider and red wine, I really do come from a family of alcoholics, its the Irish blood in us! Whereas, poor ole me had to sit there with J\2O's and a cup of tea (how sad). Had a good time though, then my Brother went off to band practise and my Dad arrived and we ended up in Costa Coffee, all I seem to do lately is wander around the coffee establishments of the City. I should have shares in bloody Starbucks and Costa!
It's a strange feeling though as all I want to do is to go home, but I can't its very frustrating as I am actually feeling quite well at the moment but my counts are dropping so I can't go anywhere until they go up again which will hopefully be towards the end of next week, otherwise I think I might crack up.
Poor Stuart didn't finish work until 8:20pm so I ended up visiting my friend Linda in hospital, I love the place I can't stay away!
Hope you all have a good weekend, special 30th Birthday wishes to Tudor, have a great party tomorrow, so gutted that we can't be there with you all.
Yesterday is history, tomorrow is a mystery, and today is a gift, that's why they call it the present.
Sarah
x

What a difference a day makes

Its Sarah speaking at last, I am finally back in the land of the living again. As Stuart mentioned the last course of chemo was really tough and I just felt totally out of it but not in a good way. Yesterday (Weds) i struggled over to the day unit, I really wasn't feeling good and could barely walk. After doing some tests they discovered that my blood counts were really low so I had to have 2 units transfused. I had to spend the day there hooked up to my blood bags and was feeling really depressed. I had quite a few tears but managed to pull myself together after a long chat with Mum and some texts from sis-in-law and friends and a visit from Fiona (Sausage).
Woke up this morning feeling like a new woman, the blood must have worked! and I was seeing my gorgeous girls today, its been 9 long days and I have missed them terribly. When I saw them coming towards me I literally ran to them, I definately couldn't have done that yesterday! Words cannot describe how happy I was to see their little faces,special thanks to my lovely in-laws for bringing them x. So I got to spend most of the day with the girls and it has lifted my spirits beyond belief. Also, my Support Nurse Elaine pointed out to me that within 6 to 8 weeks I will be finished all my treatment and i will be back home for good, such an amazing feeling. She has only known one other person to whizz through the treatment so quickly, he did it in 4 months so I have got to beat that and I can be the one she talks about to other patients and be an inspiration to them.
After the girls went I sat in Starbucks for a while then visited my 2 other AML friends in hospital and then Stuart and I finished off a great day with a trip to Wetherspoons for the Curry Club followed by a couple of pints! Unfortunately, I am on antibiotics so I only managed to sneaked in half a shandy, thank god my doctors don't hang out there after work!
Will update again soon.
Lots of love Sarah xxx

Always look on the bright side of life....

Sarah received her last dose of Chemotherapy at lunchtime today. As mentioned, before the 3rd cycle involved a much larger dose of Cytarabine than administered before (10 times as much) so how the body reacts to the treatment is an unknown as we have no experience to draw comparison. Treatment is given in 2 doses on days 1, 3 and 5 (lasting 4 hours at a time and are given 12hours apart each day - therefore Chemo is given 8am - 12pm and then again 8pm-12am on Days 1, 3 & 5). Therefore, this intense treatment really does take its toll on all your resources. The feeling is akin to being heavily drugged, feeling like a zombie in your own body: you are vaguely aware of what is going on around you but all you can do is sleep, and even after sleep you feel as tired and restless as you were before you went to sleep. You just don’t feel right, I suppose it is hard to describe in the third person.
The relative ease of which Sarah sailed through her last cycle of treatment (which included being able to administer her own Chemo at home); proved a false dawn when compared with this new level of treatment. The last few days have reconfirmed the long, arduous, but ultimately rewarding journey, we find ourselves on but it is a journey that must continue with as we seek its’ end and a return to normality. We are under no impression that the rest of the treatment will be easy and there is no definite date when we can return to normal but we must remain focused on 'why' we are going through this short-term pain as we seek the long-term gain.
We are hopeful that the children are coming up by train from Southend on Thursday, as Sarah hasn’t seen them since her return to Barts. It is this separation that is hardest part of all the treatment, all Sarah longs for is to be back at home cooking, cleaning, washing, reading bedtime stories, doing the Iggle-Piggle dance (oops! sorry Sarah I divulge too much!), caring for her children. We know that Sarah will be able to return to carry on these pleasures, but nonetheless it is still difficult to try and comprehend why any of this has had to happen......

Sir Beefy

Trooping the Colour and celebrations for the Queen's official birthday were taking place just down the road and we had the pleasure of seeing the Red Arrows zoom across town, so we didn't feel like we missed out on the Southend Airshow. The Queen's official Birthday Honours were also released and one such award was very close to our hearts. Arise Sir Ian Terence Botham. Good ol' Beefy, not only was he one of the finest allrounder cricketers this country has ever produced, but his unrivalled efforts for raising money for Leukaemia Research knows no bounds.
Cricket, as many of you know is a true passion of mine and not only do I share some affinity with Beefy (maybe more off than) on the cricket field but there is also a recent shared passion with the fight against Leukaemia. My passion fuelled by recent events, Beefy's passion by his own admission.
I read his autobiography a number of years ago, and can remember the story behind his involvement with Leukaemia but I'll let this passage, from an article by Andrew Miller from Cricinfo, explain his his interest:

"It was a broken toe and a visit to a Somerset hospital that launched this second career, way back in 1977. He came across a ward of terminally ill children - reading and playing boardgames, and looking healthy in every regard other than the obvious. It left Botham, a young, rumbustuously healthy sportsman, dumbfounded and helpless. There had to be something he could do.
And so there was. In 1985, at the pinnacle of his career, he walked 900 miles from John O'Groats to Land's End to raise awareness of a dreadful blood disease that at the time claimed 80% of the lives of the children for whom it was diagnosed. In 1988, upping the ante as only he could, he crossed the Alps with a herd of elephants in a re-run of Hannibal's assault on Rome. He made it, the elephants didn't.
And on October 17, 2006, at the age of 50 and with £10 million raised directly through the soles of his feet (and an estimated £100 million through the ripple effect of his patronage) Botham completed his 11th such trek, striding down Oxford Street like the Open Champion on the final hole, with a cortège of exhausted friends, celebrities and mediamen trailing in his wake. By then, leukaemia's mortality rate had plummeted to 20%. There is no danger of him stinting in his efforts until that figure has reached zero."

The Full article can be read here: http://content-uk.cricinfo.com/ci/content/story/298183.html
The award of a knighthood for Beefy is long overdue considering his feats both on and off the cricket field.
Sarah received her 3rd dose of Chemo this evening at 8pm, expecting to finish at around midnight and then her 4th dose is given in quick succession Sunday morning at 8am. The high level of Cytarabine that Sarah is receiving increases the known side-effects and Sarah is experiencing very high levels of tiredness and she is left feeling "spaced" out but we all know Sarah's resilience and we would both like to personally thank Sir Ian for all his efforts in helping raise money for Leukaemia - Beefy you certainly deserve you knighthood. Thank you.

Day 1.5 in the Big Barts House!

Sarah was told to report to the Lawrence Ward no earlier than 4.30pm for her second dose of Chemotherapy but she headed over to the hospital by 11.30am to have her observations and bloods taken and to see the doctors. By the time the doctors arrived to examine Sarah by 2pm they had assumed that Sarah had already had her second dose of Chemotherapy (this was to be given at 8am), obviously we were not aware of this and were told it was to be given at 4.30pm that afternoon!! Sarah was hooked up by 3pm and given her second dose of Chemotherapy, albeit 7 hours behind schedule. I found the apparent lack of communication alarming as someone had misread the routine required and although not a critical error it is something that we could do without - the medical care can not be faulted but basic administration sometimes appears to be amiss.Happy Birthday to our niece Ella Mae who is 8 years old today, I can clearly remember taking the phone call to let me know she was born - I was down in Somerset on a cricket tour, today I am still away from home but playing in a more important match that I intend to smash for six!

Here we go again...

Sarah's randomisation came back and inevitably she was assigned the MACE treatment so faced with the prospect of being hooked up constantly to Chemotherapy for the next 6 days we took the decision to come off the AML 15 trial and switch to the Barts standard treatment. This decision was met with a tinge of regret as we felt that we were "doing our bit" for research and helping future patients but Sarah's results will still be collated and be utilised by the trial, and she did have her first two Chemotherapy cycles under the "AML 15" trial umbrella. The Barts standard treatment, 1.5g of Ara-C (Cytarbine), was actually included as one of the treatments in the AML 15 trial, this will be given in 6 doses each one lasting 4 hours over the next 6 days. Although, Sarah received Ara-C during her first two cycles of Chemotherapy the dose given in this 3rd cycle is ten times the amount previously received.By 6.30pm Sarah was recieving her Chemo again and begun the familiar routine of letting the drugs ruin her (now leukaemia free) blood and the familiar feelings of sickness and lethargy. It wasn't until 11.30pm that we were back in the hostel after another hectic and emotional day.

Remission

Sarah started the day as much as she had ended the previous one, sick. Unfortunately, the lumbar puncture had caused an extreme nausea and headache and Sarah couldn't keep any food down. So, in the afternoon she was admitted to the hospital for 24 hours to keep her on fluids but if Sarah's nausea subsides she maybe allowed to come back to the hostel (so it may not be the last night at my London crashpad!)Special thanks to Helen (sister-in-law) for being a great comfort to Sarah during the day when she was at her lowest.
However, there is an upside to all this: Sarah's bone marrow and CT scan results came back and she is in Remission! Her blood and bone marrow no longer contain any trace of Leukaemia, so she is back to normal exactly two months since she was first diagnosed, a truly remarkable feat.
However, the next two cycles of Chemotherapy (consolidation) are required to ensure that the leukaemia doesnt have a chance to come back and it is extremely unlikely that she will need a transplant. Although, we must be cautious that Sarah doesn't pick up any infections that can impede her recovery as the Chemotherapy will reduce her immune system to nothing. It also means that Sarah is allowed to continue with the AML 15 clinical trial, however one of the courses of Chemotherapy (MACE) involves being on a constant 24 hour drip for 5 days (something which isnt appealing); so tomorrow we shall see what we are randomised to, and if it is MACE, Sarah will withdraw from the trial and have the standard Barts treatment (which can be administered as a day patient meaning that Sarah can stay in the hostel without being admitted to a hospital ward).
So, Sarah is in the Lawrence Ward and I am writing this in the hostel, spookily Sarah can see my type this as the ward overlooks the hostel so I best not divulge too much. Anyway, hopefully day 1 of Cycle 3 starts (Thursday) and we start all over again.....

Back to Barts

An uneventful trip to back to Barts and another day of tests in store for Sarah. First another bone marrow test, Sarah's fourth in two months, and then a Lumbar Puncture (Spinal Tap) along with a shot of Chemotherapy administered to the spinal cord and then a CT scan to monitor whether the original lumps in Sarah's stomach had been completely nuked by the Chemotherapy.The series of tests, although now familiar procedures, are very draining on Sarah's physical and mental state and by 5.30pm we were free to return to the Gloucester Hostel to take stock of what the day brought. It seemed almost surreal that 24 hours ago we were enjoying a pub lunch and being at home watching Iggle Piggle and Co. (although I think I have a new favourite in Roary the Racing Car - Monday's 7.20am Channel 5 - featuring Peter Kay!) However, our evening was free and although Sarah had a headache and felt tired we braved Pizza Express (again!), however it was extremely hot and noisy in there and we had to leave earlier than we had intended and sought the comfort of the hostel.

12.4 is the magic number!

We’re home! Sarah reported as normal to the Bodley Scott Day Unit for her morning blood tests, and it being a Tuesday, she had to wait for the doctors to examine/question her. Inevitably the doctors are always running late so by the time they saw Sarah at 2.30pm her morning blood test results were back.
Sarah’s blood counts had rocketed from the previous day: her neutrophils(a type of white blood cell which forms an early line of defence against bacterial infections) were 12.4 and this brokered the question from Sarah – “Well does that mean I can get ready to go home?” to which she received the flippant reply “You can go home today”. Whoa! Today? Day 18 of cycle 2? But normally you can not expect to be allowed home until at the very earliest Day 21 but who are we to argue? As ever we were prepared for a sting in the tail, surely they wont let us home for the full 7 days – well yes that is the plan.
We are due to go to Southend Hospital on Friday for some blood tests to ensure Sarah’s levels aren’t declining and then if everything is well we are to report back at Barts on Tuesday June 13th . This second cycle of Chemotherapy treatment has been excellent – Sarah spend just 7 days in hospital, 8 days in the hostel and 2 days at home (where she administered her own chemotherapy). I am certain that spending a shorter period as an in-patient has boosted Sarah’s progress through this cycle and we are hopeful that this trend may continue (although cycle 3 of treatment introduces different chemotherapy drugs at higher doses than any of her treatment before).
Unbelievable – Sarah is truly displaying remarkable levels of resilience, courage and determination to beat her battle with AML in record breaking time. It is so easy to get carried away with all this good news, but we know that we need to be mindful of all possibilities but at this stage things are progressing very well.
Sarah was given a top up bag of blood for her journey home, and off we packed to Fenchurch Street for the 8.30pm train home, still disbelieving that Sarah had steamed through cycle 2 of Chemotherapy. The children are coming back from Kent Wednesday to be reunited with their mother for what we hope will be a normal, fun filled week at home and hopefully Sarah might get to see a bit more of Southend than normal(!)
So until next Tuesday, when we report back to the day unit for cycle 3 to start off with a bone marrow test, a CT scan and a parting shot of intrathecal chemotherapy, and then hopefully we will get the all clear to continue with our randomised treatment for stage 3 for the clinical trial AML15.
A tout a l'heure

Monday June 4

Welcome to the first journal entry, just to give you all a brief update on Sarah's current position.
Sarah is currently on Day 17 on her 2nd cycle of Chemotherapy, and we are currently staying in the Gloucester Hostel which is across the road from the main hospital site. Sarah actually came home on May 24th for a couple of days so she was able to spend her birthday at home, and administer her own Chemotherapy, the best birthday present she could have hoped for!
At present Sarah's platelet count is low, after a couple of platelet transfusions, so she is having some extra special platelets shipped in from Brentwood(!)
Her daily routine is now set as she has to report to the Bodley Scott Day Unit at the hospital twice a day: 10am and 5pm, so that her observations are taken and the doctors have the opportunity to monitor her progress. If given the all clear then Sarah is free to leave the confines of the hospital and venture into the City!
The children still come up once a week on a Saturday and have such a good time with their mother, and it is too cruel that Sarah is kept apart from them during her illness when she should be the one at home looking after them. Both the girls have grown up so quickly during the last few months and I regularly catch Abigail telling Natasha that "Mummy is in London, Calpol".
Anyway, a short brief update and now that this site is up and running I shall try and keep it updated, and back post some journal entries.
Apologies for the recent lull in Barts updates but would you believe work has been exceptionally hectic of late stemming my capacity to pen witty retorts!.
Stuart

A Mixed Day

The children came up for their weekly Saturday visit, we played in Postman's Park (one of the best kept secrets in the City) and the children played on the grass and watched the fishes. We went for a stroll around St Paul's and stopped for a coffee and the children befriended a small dog, called Pepper (don't know what breed it was), which was seeking respite in her owners handbag!
We went for a family supper in Carluccio's, an Italian restaurant in Smithfield, and the girls enjoyed Pasta and ice-cream before everyone departed for Southend and left Sarah in London. No matter how often this happens it is still hard to accept leaving Sarah behind.
Sarah's platelet count was low today, so she needed to go back to the hospital for 7pm where hopefully her special single donor platelets would be ready for her. They didn't turn up until 8.30pm and by the time she received them and had a blood test, it wasn't feasible for her to return to the hostel. So, she spend the night in the Lawrence Ward.
So, an enjoyable day that ended with an admittance to the hospital, thankfully Sarah was released early Sunday morning to return to the hostel and catch up on a disturbed nights sleep.