Finally back home after some Blips! A Month On:

I am very sorry for lack of updates. No excuses really, apart from a few blips. Now that my lungs are working, my bowels have decided to kick up a big fuss. Cystic Fibrosis effects not only the lungs, but the digestive system aswell. I have to take enzymes everytime I eat to help digest the food I eat.

Anyway, what happened was I went to clinic after being home a week and getting on with walking and my lung fucntion steadily improving I start to retain fluid again on my feet, but the doc was pleased with me and gave me some water tablets (frusamide) and went to walk out, and Ruth the nurse grabbed me and asked me what Martin had done with my immuno tablets and I replied nothing why and she replied back, oh well because they are low. Oh I said, okay, no worries, so how many tabs do I need to take to get them up, but she kept putting the answer off and said we need to talk to Martin first, and then he saw my new results and said "Sally you are giving me a head ache" I thought charming hehe, anyway, my levels should be in the range of 280-320, I was usually running at 300, anyway, my levels had plummited to 134. MEGA DANGEROUSLY LOW. So I said I have to come in don't I, and he sadly nodded. Damn I was doing so well. Neiter of us could think what had happened other than I had a peg in my tummy, which I was asked to take it out as I no longer needed it anymore, and what was happening when I drank Tea, Milk, or Orange Juice (mainly when I drank OJ) did what I drank come out of the hole that had been left by the peg. (A peg / gastrostommy) is a tube that sits outside my tummy and goes directly into my stomach which I have posted previously, which was to help me put weight on, and now I nolonger need it. But now is causing problems as is NOT HEALING :-(

So I had to go into hospital and go on a drip to stop my new organs being rejected. I felt tired and rough ever since saturday /sunday just not myself, and on the Friday did I start drinking Orange Juice and since then the acid in the juice had made the hole a whole lot bigger and more fluid was escaping, and we came to the conclsion that I was loosing the Ciclosporin (immuno's) through the hole, so it was decided between the doc and I that I was to be changed to Tacrilimous another drug to prevent rejection. This took a long time to get levels right and to this day 4 weeks on, they are only just settling down. When I was first changed, I lost my healthy appetite and I was a mood mare....... I was behaving like a 5 year old spoilt bratt and moaning at everyting. It was worse than PMT let me tell you. Finally I was allowed to go home again, at this point since being discharged after 7 weeks post transplant I had only been at home 6 days. I went home, on tac and was going to my local hospital for blood tests and was sending the samples back to harefield for them to be checked and this was a great routine. Then, this being tuesday, I went to POO and that was the last time for a very long time. By thursday evening I was in AGONY. But still I carrried on and ate my lovely steak fillet of Salmon, new potatoes and brocli to which I cannot stand the site or smell of now :-/ Friday morning at 4am I woke up as a cripple, I couldnt stand up straight and I was bent double in pain. I phoned harefield worried that I wouldnt be absorbing the immuno's and what to do. They said go to local hospital and get some gastrograffin from there. Gastrograffin is a brilliant laxative and makes you go really quickly, but stinks of anisead. But we went to A&E and they were great. They put me in a room and instantly reversed barrier nursed me and was fab. I was given pain relife (pethadine) no soon as the pain was gone, I was able to sit up and thats when the vomiting came. All the food I had eaten that was still in my tummy came up in chunks. (nice) hmmm...... Then I felt better and the pain had eased a little. I had both chest and tummy xray. I was moved to one of the natal wards (as only place with a side room for me) and the worst thing was, they wouldnt give me any pain relief IV, :-( I had to have it IM. (in the muscle) which didnt work as well, and then anti sickness I refused as I had been told that having that IM is totally painful. Then I was able to be moved to the surgical ward upstairs one or 2 days later, which meant more nurses to patients and I could have the care I needed. There was talks of surgery as my bowels were not moving and I was vomiting blood up by then, no green bile like I had in the past. In the past (last time 3 years ago) I had the same problem and I was bringing nie green grass coloured bile, but this time it was brown and like coffee grains. I had then bloods taken and they were sent by accident to the QE in Birmingham, NOT Harefield in London, so I had to wait another day to see what my levels were. The first time they were in theraputic range, then I had them done again and they had dropped, by now I was getting worried, as I still hadnt poo'ed and I was being sick all the time. Then it was decided that I was to be transfered to London. Which is where I wanted to in the first instant. I had Klean Prep, Gastrografin and suposatries and nothing, I asked for an enema but they were not keen to give me one of those this time, saying it was dangerous. So it had been arranged that I was to be moved to London and before I went to have a CT scan and a camera down to see what was going on, but these tests were not done and finally I went to London. I had some good pain relief and anti sickness which I had IM in the end as by now I had over 11 canulars in my arms, hands and now I had one in my FOOT. . . again (nice!) The anti sickness Cyclozine was tissuing each venflon I had, so I decided to have it IM, and you know what, it didnt hurt like I had expected it too, so I was happy and then I was having the pain relief via the canular in my hands/arms and foot along with fluids which I started to retain and blow up like a doll. I then couldnt breathe as it was collecting on the lugns again like it had done before when I needed 2 more drains, and I didnt want to have surgery there again.

Believe it or not, the ambulance who came to collect me to take me to London, was great, it had hardly any suspension and it must have kick started mu bowels in to working, as when I got to London which was almost week later from my first admission I was able to poo out the hard bits of rock, which was black and really smelly......

The next day I saw our doctor which was now thursday or friday I think, and he was slighly concerned to my levels being low and I was put on a drip again to make them better and was looking into more tests on my tummy, but as I had now finally been to the toilet he was relieved, but couldnt understand why the bleeding, but the sickness settled and after 6 bottles of gastrograffin I was going, it finally just just went in one end and came out the other the same way. I was neeeding lots of lactulose and movicol. As the pain came bad again ever time I eat and still does now, so if I take lactulose before I eat I dont get so much pain and if I have movicol before bed it comes out nice in the morning. My usual is twice a day and to not go for all that time, it was agonising. I dont moan about a little bit of pain,only when it gets that bad, I dont even take headache tablets for head ache only foot ache!! hehe - joke, but no, I suffer in silence, but I do show off about pain when its at a scale of 8-9. 10 being the worst. By 10days after I was first admitted I was almost ready to go home. My mum came down to stay with me, as I had become so weak from not being able to eat I couldnt do alot for myself again and this was frustrating. Was also good to have company too. I decided that I wanted to go shopping and have my hair cut, so me and mum went into Uxbridge. I bought some new clothes and sure enough had my hair cut. Wish i'd had it abit shorter now, but hey ho, could be worse. But you know, whilst I was shopping I felt rough as a dog. I couldnt walk, I felt so out of breath, and my heart felt like it was going 10 to the dozen, so I didnt really do alot, and never have I walked so slow. We went back to the hosptial and I checked my oxygen sats and they were fine at 97-98% however my heart was 120-125, slightly higher than it had been at 97bpm, and I was shaking like a leaf. The doctor came to see me later on that night and said Sally, please do not take any immuno's tonight or tomorrow morning, they are too high. I asked what they were and the range of tac should be between 5 and 10. Mine were in the 20's. I asked is this why I feel so shit, and his reply was probably yes. So basically I had to wait for it to wear out of my system. That night I was sick again, for the first time in about 5 days. It took me over a week to start eating again and then I was just having soup and abit of bread, hardly anything to keep a mouse alive, so this feeling was horrible. The next day I woke up early and felt good. I got dressed and just felt okay. Today is Tuesday now, and the docs came round in the morning and said i'd be in for a couple more days atleast. Then a few hours later the boss man came round and was shocked to see me and said why am I not home, I gave hi a brief update and he said, well you are pooing now, so if you'd like go and have bloods done at home and send them in. So I looked at my mum and then back at him and said great. I had a few tests done before hand and then I was aloowed to go home!!!! YAY!!!!! So Now post transplant I am now 10 weeks. 3 weeks after my original discharge date. I was excited to go home as My girls didnt know I was to come home and the friday following this Tuesday I had a show to go to in London "The Jersey Boys" Frankie Valli & The 4 Seasons. So great, me and mum were on our way home. Mum was actually going to come home this day anyway, so it was a good job she hadnt left before I saw Martin.

Coming home was brill. I went round the back and tapped on the Window where my mother inlaw was and Kelsey first looked up and saw me, shouted my name and then Megan too. They opened the door to which I recieved a huge heart warming hug by nearly knocking me over. I had by this point lost most of the fluid off my lungs and pretty much everywhere else too. My legs were like Sparrow legs, very thin.

So Finally Home, and this time, hopefully to stay, and am hoping that all the blips are a thing of the past.

Ill end here and finish off tomorrow or tuesday. I have some pictures to post, but need to sort them out. Bye for now x x

Coming Home

Tuesday:


I AM GOING HOME!!!!!!! The girls do now know that I am coming home... Its total suprise to them. I emailed their head teacher asking them if they can have the day off as a holiday day to come and fetch me from the hopsital as a suprise to them. So mum cunninly said to the girls, shall we have the day off and go and see your mum as you havnt seen her in a couple of weeks and much to Kelesey's delight she agreed. So when Kelsey and Megan came into the room I acted suprised to see them and asked "what what are you doing here"? And Kelsey said, well you said we could have a day off school to come and see you and we thought we would do it today - Oh I said, and thats when I told her she had actaully came to take me home and the look of disbelief was total amazement!!! WE RECORDED IT! HERE IS THE VIDEO -





I keep watching it, as I still cannot believe how long it took her for it to sink in. But its the best feeling in the world to see her face light up and be in total amazement (just like the mobile phone present last year from the BBC NEWS) but this time that I am tube free and am actually coming home which has been a distant dream and on each birthday wish of candle blowing for the last 3 years, had actaully came true for her.
Megan Keeps telling me she loves me all the time, and is giggling when she thinks about it. To be honest, I am not sure if she really remembers me without the oxygen, as she is far younger than her age of (5), and in one way I am glad for that as she has her innocence, but sad that she may not have remembered me healthy before I got ill. Either way, my girls both have their mummy back and I have them. I couldnt have wished or asked god for anything more, as I feel COMPLETE!

Kelsey's Version

I was singing ready for a concert that weekend when nan got a phone call. Nanny went out the room so i could finish the song i was singing, when she came back inside she was slightly flushed but i didnt think anything of it and carried on singing till it was half past. We went outside and were walking to the car when nanny looked me in the eye and told me the marvellous news, mummy had got a call! I felt as wonderfull as the news and apparently wouldnt stop bobbing up and down in excitement until we got to the car, nan said that we cant be too hopefull because it will probally be another false call but i didnt listen, I was sure mum would get her dream come true!!! When we got home mum was fafing about all over the place "get these, oh dont forget those! oh kelsey go and get this, oh my we need this!" it was a hard time but once we were on our way everything was calm again. I felt great and mum did too probally and i thought about what would happen.

We arrived at the hospital and got out in a hurry, (we were slightly late) we all rushed into the hospital then in the e-ward, a nurse led us to a room and mum got loads of tests done and then the news arrived. "Get your shoes on kels, we will be going home soon" "But mum" "Kelsey, do as your told and get your shoes on ready" "Okay, but i still say you will get your lungs still!!!" That was when Nicky came in to say the brilliant words that changed our lives forever. "Sally, where do you think your going?" Nicky said puzzled "what, do you have anywhere else to go?" "wait, is it happening???" Mummy said (she looked totally shocked, excited and so like she was about to burst) "mm hm" Nicky said a bit sheepishly. mum nearly shrieked, i was spellbound and nannys lips just twitched upwards in silent delight. We hugged mummy and we were all crying happily, i nearly felt as good as mummy probally was! "I TOLD YOU!!!" i shouted quietly to everyone "i really really told you!!!" "didnt i tell you!" mummy looked at me warmly "yes you did". We all hugged then mummy had to get ready quickly then she plaited her hair and fate knocked on our door as mummy and i climbed into the trolley thing, we were both smiling as we were wheeled to the place of the unknown. I could go no thurther although i really wanted too. we kissed and hugged for ages until Niki said we had to get a move on. I had so much emotion on my hands i nearly started crying but mummy said that if i was going to cry then i should do it after she had gone in, i felt the tears go instantly and i was able to hold it together for a few more minuites. She smiled at me and i hugged her then she was taken to answer the door of fate that had knocked not so long ago. then i snapped, tears dribbled down my cheeks, i felt terrified, happy, marvelled, scared, wobbly, dizzy, all the sensations you could ever imagine, but then i felt a wave of relief as hopefullness added onto my feelings. We went back to the room but i got a bit hungry so we wandered round the hospital and got some toast and a hot chocolate, i felt better then but we wandered round a bit more until i was tired then we went to the room and went to sleep although i said i wouldnt.

I woke to nanny karen, aunty julie and gramps talking to each other. I rubbed my eyes, so i hadnt been dreaming! I looked at the clock. "Is there any news?" i said still half asleep. "do you want a cup of tea?" gramps asked me in his husky voice.
"yes please" i murmered. nanny karen was the one who answered my question "we can go and see her in ten minuites, she made it, shes always been a fighter". I hugged nanny in delight, and in ten minuites i was walking to I.T.U beaming like the sun on a summers day. When i saw mummy i tried to run but i had to walk and be a good girl which i'm good at when i want to be. When i saw her for the first time i felt really happy, i expected alot worse but no she looked like a queen compared to what i expected, I had thought she would have tubes everywhere with moniers and circle plasters on her but when i saw her i felt all bubbly and, well, shocked. I squeezed her hand because the nurse said it was okay and when i did i was so excited because she squeezed it back! you dont know how excited i was! nan said to be quiet because i was kind of squealing, i was so happy. I did that afternoon too but then they took out the breathing tube and mummy was croaking, sleeping and drinking a bit too. The next a day i went for a trip in the wood with nan and that was fun. And the day before i left to get back to school mummy was able to sit up and talk a bit more, in a few days mummy would be moved to the e-ward again so that kept me going when i was not with her. Mum has always been a fighter and look at her now! she's as strong as anything strong and i love her loads. xxx.

Drain Removal -One Step Closer

My Pair Of Drains

Had left (pigtail) drain removed today - (Sunday) and it didnt hurt at all. But this means I am one step closer to coming home on Tuesday like the doctor had told me last wednesday. However each time I have been given a discharge date it has been postponed. but I am so determined that this time will be for real, as I feel so different since having these two drains put in. The pain is non existant with the pain killers and I am not dopey from them either, so as long as the drains are doing thier job I dont mind them being in, as I am mobile - by going to the canteen with them in and walking up and down the stairs, so I am happy, I just would like them both out before Monday so I can go home Tuesday. :-)
Had right drain removed Sunday - YAY!!!!! FINALLY I am TUBE FREE!!!!! It feels weird. The nurse put an opsite dressing over the mepore dressing so I can go and have my first shower of the week / month!!! (PHORGH, whADDDA STENCH!) :-) And it felt good. No MUM to keep an eye on me either - just be and my toiletries and RAZOR!! Took my time and enjoyed the freedom of the water and stream and just being me!
I sent my mum home you see on Friday and usually my dad stays with me at the weekend but I asked him not to bother coming down this weekend as I was fine. I was abit lonely as for the first time since my transplant it was just me. But I enjoyed the ME time. Gave me time to contemplate about things, and that was heaven to be honest. I needed MY own SPACE, as I knew when I got home I wouldnt have that. I should have updated my blog then when I was on my own, so I do appologise, but I needed that time for just me. Now I feel stronger for it and know where I am going in my life, well the direction that id like to go anyhow. These are all my stitches and staples which DID NOT HURT to come out. I was really dreading it, but in all honesty I did not feel a thing.
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My sister got married on Tuesday in Gretna Green (SCOTLAND) and I have seen photo's and she looked beautiful. I will post pics when I get a decent one from my dad. I was bit disappointed that I couldnt go but getting better at the hospital was much more important and she knew I was thinking of her as I kept texting her. She had a lovely day and evening too.
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Monday: After Shower and getting my dressings re done I get dressed in normal outside clothes and make myself up, showing the docs that I am ready for the home!!!!! So all is planned providing that night nothing serious happens to go home Tuesday!!!!
I cannot sleep, I am so excited, but exhaustion finally catches up with me and I fall asleep, and I sleep WELL . . . . Probably the best I have ever slept since the transplant.

I keep calling my mum and being as excited as a primary school girl on christmas eve - no tell a lie, I still get that excited on christmas eve anyhow, even last year when I was really poorly, I was just as excited!!

My Bronchoscopy:

Firstly A Bronchoscopy is a technique of visualising the inside of the airways.

I wasn't getting better, just slowly worse and I knew this before the medical team would listen, and it took me loosing what lung fucntion I had gained via this transplant to be halved my 50% before they would listen.

Anyway, it all started last Saturday afternoon when my I had me dinner . . . . . . . . .

I had a cooked breakfast which I have most mornings and then at lunch decided to go to the canteen as their MASH is much nicer, and had sausage, which I dont usually eat. Then I decided lets go for a drive in the car as I needed some freedom and then we eneded up at a pub called the coi carp, which had quacking ducks (yeah really) and a pond well a canal and was most beautiful the surroundings were anyway and whilst dad was getting drinks I couldnt help but look at the food menu and I spotted a duck salad, so i ordered that aswell. Was really nice. (I had my o2 with me, that didnt bother me, after what was left, why bothering to hide me being poorly when soon id be running around so to speak) anyway, we ate and drank and had a good time. When we got back to the hospital after going AWOL, I had supper, and then dad went and got me more food from canteen to top me up. I was happy and full.

However, due to my lack of digestive skills, this is where the problems came thick and fast. The next day my breathing was harsh and fast, and when i went to go on the bike I was weaker than before and I knew in myself I felt different again, and I tried to tell docs, but they said it an off day, so Monday was an off day too, again trying to convince them with my blows going down and becuase I walked back from xray myself the docs deemed me okay, even though again I tell them otherwise. Tuesday my saviour, they listen!!!! They arrange a CT and see I have lots of fluid, but nothning conclusive of infection or rejection - so they finally say BRONCHOSCOPY! Which I think should have been done sooner, but I know they were just trying to save an anaesthetic as being ventilated they said would be hard for me to come off, but enough putting it off, I finally was going to have one.

So 8am Wednesday morning the hunky poter man came to fetch me, (and I was having a poo) i'd just had a bottle of gastro graffin - (for those who do not know this, its a bottle of heavy anisead smelling laxative that is very potent in both ways smelling and how it works)!!!!

Here is a pic of us before my trip to theatre for the proceedure:

Got down to theatre where my mum said bye and I said bye to Ed (is what I named the porter (as when he has his hat on he looks a lil bit like EDWARD from TWILIGHT)! He wont thank me for this I know!! - Mind you it could be all the morphine im given, but hey, he made me smile, what else matters. They left me and then I was in the hands of some lovely docs and and an anaesthetist. My heart rate before falling asleep was 140, and sats not great either, needing 4-5 literes to maintain sats of 94-96%. Anyway, before falling asleeping after having the fennyl injection the doc said to me, you will be on the ventilator when you wake up and will be for a few days as you are really tired. I didnt believe him, but agreed to what he said and sure enough, I woke up on the ventilator, but remember the recovery not sure which as I was whipped into theatre twice, but remember writing down things on paper for the recovery staff to read as I was awake and wanted ventilator out!!!!!!! It wasn't long before I got what I wished for. I did see Ed again. he came in and I pretty much jumped on him, well if I could I think I would have. They wouldnt let my mum in recorvery and so when I saw him, I grabbed him literally and squeezed his hand and bless he did it back, then I remmeber falling asleep. He gave me peace which is what I needed as I was become quite frought I remember, but out of all the other people I remember him clear as day was quite weird really cos I was really spaced out so he told me later, though I havnt properly apologised for practically jumping on him in rocovery!!! hehe

And here is another pic of me ventilated but this time with my favourite lady anesthetist who did my CVP line once too. Mona Her name is, and she is lovely...

What had happened well you guys know from my mum, I ate too much, which pushed up fluid into my lungs higher up, causing breathing obstruction, needed 2 drains to drain off fluid, which today from last wednesday is still draining, but slowing down now, which now I can breathe. And its really a FANSTASTIC FEELING!!!!!!

Hopefully drains to come out in the next few days.

My little walk and rest for my WKD SIDE!

WALKING UP KILLER MOUNT STAIRS

(really sorry about side view again) Need a dummies guide to this!!!!

Anyway - My Walk up Killer Mount Stairs!

Okay, I have oxygen on here, but this is the first time really out of my room since my last stint in ITU which I was itching to do. My room had become very boring. Since this (yesterday) I have been up the stairs and have lost all oxygen tubing which is the BEST FEELING IN THE WORLD! I have two drains in (which again not painful at all) I tell you, its wonders what pain relief can do for you!

After my hard work of doing the stairs I sat down in my room and rested - and I did this ->

Which was heaven. Painting them, (one of the first times I have used nail varnish as I really didnt have the energy or time to pamper myself with toe painting, and that really did my head in, not having time or energy before, as I used to have them painted nicely all the time. Anyway, I had a relax and whilst I was doing that, I noticed my drain - which okay is hard to miss, but something funny, so I recorded it for you all to see, turn away, or then again, dont press play :-)

!!WARNING!!<>

Today, My Nan and her husband Roy came for visit, they got mega lost, and a 2 hour journey took them over 3 hours. Bless, but thankfully I got to see my nan, been dying to see her for ages now, but unfortunately Roy's Son Kevin passed away just under two weeks ago. He had MND.

Motor Neurone Disease (MND) is a progressive neurodegenerative disease that attacks the upper and lower motor neurones. Degeneration of the motor neurones leads to weakness and wasting of muscles, causing increasing loss of mobility in the limbs, and difficulties with speech, swallowing and breathing. He has been battling on with this disease for a long time, and he fought with every bit of courage and dignity I could have imagined, and wish that he be in peace now. I remember he had this computer thing, and when I went to see him, I of course got him to say out a swear word via the robot computer to which we giggled at.

To find out more about MND http://www.mndassociation.org/life_with_mnd/what_is_mnd/index.html click here.

And had lunch at the hare - I had RoAST Beef and Yorkshire PUD!! Ouh Argh, it was tasty!!!

Hi again mother reporting on this weeks events

Sal hadn't been too well since saturday, she has been eating enough for a regiment and got a bit blocked up. she was finding it hard to breathe and she had to increase the oxygen from about 1 litre to 3-4 litres, her spirometry was decreasing too. she could only manage about about half of what she was doing. By tuesday she was feeling really unwell and she saw the doc and her sent her straight away for an xray then a CT scan. These did not show much except there were some changes but nothing darastic. they decided to do a broncoscopy, so the next morning thats wednesday she went off to theatre to have the proceedure. I was told that she should be back by 11am so I waited in her room, 11am came and went and no sign of Sal, the doctor came into the room and told me that she was having a little problem breathing so they had to put her back onto the ventilator and she was in HDU just off the theatre and i couldn't see her just yet and she should be back at around 2pm. At around 1.30pm a nurse came into Sals room and told me that she would be going into ITU, she thought I knew that but I didn't. She went and the doc came in about 10mins later and told me that she would be going to ITU, he did say he had been up to check on her just to make sure that nothing had gone wrong with the proceedure, which he assured me that nothing was amiss. I wasn't allowed to see her until she was in ITU. I cleared her room out and packed it all into bags not knowing what was happening, I didn't even know where she was, during this time the nurse came back into the room to ask if i was ok. Room cleared now to find where my daughter had got to. i went to ITU and they told me she was in theatre and was expected down soon and to wait in the waiting room until she was in and settled. i didn't quite understand what they were telling me, i spotted one of the docs off the ward so I grabbed him to find out what was going on, He took me back to her now empty room and explained that the prelimary results of the biopsy showed no infection or any rejection, so what was the reason why her breathing had got so bad? he didn't know at this stage. He told me to come back at 4.30 for the final results, I still didn't know where she was or really what was going on. He was told me due to the blockage, as her stomach was distended, she looked pregnant, lol it had pushed her diaphram up which in turn pushed the fluid further up her lungs which was causing her difficulty in breathing. They inserted 2 chest drains and drained off quite a lot of fluid, which in turn gave more room when i eventually saw her she was on a ventilator, but she was awake and she was writng notes on paper telling me she was in pain. They gave her some morphine and she reacted badly from it, It was scary I can tell you. They sorted out another type of pain relief, when that started working, she was asking how long before they took the ventilator out. It was about 4am when they took it out.

even though she was in discomfort (with the ventilator down her throat), she just wanted everyone to know she is still in good spirits and fighting everything bad that comes her way. Sal was taken back to the ward this afternoon (thursday) and has been improving ever since. She says she feels good now even tho she has the drains in and its a bit painful, thank god for the do it yourself pain relief. she has control over her own relief and only has to click a button to have some.

I expect that Sal will be writing her blog again in the next few days.

Mum signing off.