Brailsford family updates

Ruth spent the night in addenbrookes in her own room after going to A and E for a check up of her wound.  They were unsure about it last night so wanted someone to check from a specialist point of view. The nurse came round this morning. Cleaned it up and covered it with iodine. This should show if there are any issues with it. They want her in today to monitor her and have another night in to see what happens over night.  I have visited today and she just wants to be home. But we have to realise we are in the best place again and there is any sort of concern they are there to deal with it.  Speaking with the specialist nurse they are happy with the wound and Ruth's recovery so far. They just want another night to monitor it through a sleep.  I stayed on Cambridge and had a lovely cuppa tea with an old friend from our church in derby. They have kindly gave me a key so I can use their house as a base tomorrow before visiting Ruth and a place to be whilst we await rele...

So, after report it has been quiet. Bring on today. I managed to pick the new car up today which lovely. I have also just arrived at addenbrookes as Ruth needs a neurosurgeon to look her head wound to see it all is well and what to do for it.  Car review The car is lovely. So nice to drive. Smooth and comfortable. Will make our family journeys a while.lot better moving forwards and the wheel chair sits lovely in the boot. As it has 3 full size seats in the back, Zeb has bagged the middle seat so he can feel like a space pilot and get a smashing view of the journeys we do.  Mean while I am now sat in Costa coffee with a hot choc while Ruth sits in A and E for a person to pop down and see her. We have been told it could be a quick visit, or it could be a few hours depending if the guy is busy or in surgery. We have an overnight bag packed just in case. We don't want to use it but we know from past experiences to always be prepared. Zeb is at grandads and missed his first pick up...

We're getting to test the car out with a big journey sightly sooner then we thought we would. We were a bit Cheever about my wound so Mark took a photo and sent it to the brain tumour specialist at addenbrookes who rang him back and asked that we go to a&e at addenbrookes as she had iTunes then for us coming. We quickly packet a bag fire me just in case and inner for Zeb in case he needs to stay at dad's, primed dad for pick up and potential Sheri over and set off as soon as Mark had picked the car up to get petrol and something to eat and now we're on the A14 we have no idea how long this stay will be out what it will entail, we're hoping for home as quick as possible (Mark is very pleased to have just gone into eighth gear, I'm not sure I have one of those in my life!) It certainty is a smooth ride 

We've not said a lot on here lately because there hasn't been a lot to say. On Friday I had an appointment at the eye clinic at Ipswich hospital. Third is where they first discovered my tumour. This appointment was to test my visual field agree to do s scan of the optic nerve. They were very happy with everything they saw. I can't remember when my next appointment is, I think I have one this week, Mark it better at keeping on top of this kind of thing. He's the one that keeps on to of what tablets I have and need as well. Heis very very good at that kind of thing, what a good job I have him. We r starting to work a bit better these last few days which is nice too, although I tore this sat in Zebs room waiting for him to go to sleep. He should be exhausted he was at a birthday party at clip and climb this afternoon having been d at granddad's for lunch. Quantity he climbed higher at clip and climb than he's ever been before, facing his own challenges head on! The...

Yesterday was a trip to the eye clinic at Ipswich hospital to check my field of visiting and scans of my eyes, they were happy with everything and I felt like it's walked a marathon as we decided not to take the chair or walker. I was definitely slow and my legs a ache now bi need to do more walking to keep my body used to it. This weekend is all about relaxing together. According to Zeb its decs up weekend. Mark has said yes so long as Zeb helps tidy and out them up in sure I'll be napping and snacking a lot as that is my main activity group. I've mentioned the Samsung lunch rota church have put together. Yesterday's sandwich was an amazing crispy bacon and lettuce sandwich. I couldn't eaten then all day. I pretty much did eat them ask day as I allslept ploughed through them, they were delicious, thank you Judy . And everyone else who has provided any food or love.

 I was advised to get my booster Jan and flu Jan before starting treatment, so th ok sc morning was my appointment. I'm not too fussed by jabs I just choose to not look at the needle. I was quite poorly after the previous vaccinations, I was more worried about that. Thankfully I have some good pain killing medicines here to take anyway and it's not like I've got anywhere to go. I've been very tired and my head's hurt a lot which is pretty much what I was expecting. I went to sleep this afternoon and then have confused myself even more about what day and time of day it is. I woke up thinking it was early evening and that Mark and Zeb would be home and Zeb in bed but when I woke up it was still school time (dad was here and set me straight). So I did a bit more knitting and had some medicine! And kept remembering myself what day it was. Or church have kindly set up a lunchtime rota so they lunchtime someone turns up with my lunch. Third helps in many ways. It means I ...

Another trip out in the wheelchair today to one of my favourite shops, Lucy's unwrapped and refill shop. It is a fairly new shop that has opened recently near us, you take your own containers with you. With then and note the wheight and then fill your containers with whatever you choose. The shop sells everything. TodayPaul took me and I bought salted fudge, flying saucers, orzo and Bombay mix. You can also buy posts, oats, oat milk, cereal, flour of various kinds, washing up liquid, cleaning liquid, deodorant and all variety of other products. The idea of that there is less unrecyclable waste and food waste. I love that I throw less things away. And if I need things like oats I can but exactly the about I need. They also sell cloth hankies, bamboo toothbrushes, tooth paste tablets and tooth paste in a pot. Zeb only guess for the flying saucers and various other sweets!! Like as proper pick and mix section. If you are  in Ipswich go visit Lucy's on Woodbridge road. If you are n...

Mark has done all the hard work to mean we will pick up the car soon. He has sorted the insurance and the finance. We worked out it's cheaper to add dad to the insurance, but not me as I can't drive at the mo. Zeb would like me to tell you the flareon is going to the doctor's today. Flareon is a Pokémon teddy he has that had a hole in the paw. They have been practicing they're sewing skills lately making things for the Christmas fayre and Zeb thinks he can ask one of his teachers to help him use those skills to fix his broken teddy. I like it when children learn skills at school that they can then transfer.

Library I'm hoping after lunch today dad will take me to the library to pick up some books Zeb has reserved. He really enjoys that service, being able to reserve books on certain topics when he can't find them in the library itself. I'm going to have a little look as well and see if I can find and recipe books about eating for good health. Trevor books are my favourite books to take out from the library and the consultant has advised that we eat as best we can do I figure reading into foods that are good for fighting cancer can only be a good thing. I've lost track of day and time again, I think it's Monday although yesterday I was told I was eating lunch on Sunday and it felt like Monday tea time, I'm all over the place!! If you see me please greet me with three day and time to try and help me out even if it feels strange.

So as Ruth said I went car shopping today.  I had different ideas in my head from a lease, to a new car or a used car. What could I get for our old one and things.  Turns out due to a chip shortage the dealers are hungry and are not getting new cars in for a few months. So buying new and leasing a new one were out of the window.  This meant resorting to a used car. No problem at all. It's what me and Ruth are used to. I like Citroen so that was my first point of call. Trusting God has all the plans in his hand is great. As I walked in the door I was met by a man who goes to Ruth's dad's church and has been receiving the prayer updates and reading the blog. I didn't need to explain my situation much at all. He knew about it and wanted to do his best for us.  We discussed some options and came to the C4 space tourer. It is a lovely car with lots of space. Fits the wheel chair a treat and still loads of room for shopping and other items for holidays away.  I also w...

So the consultant has said that he is happy for me to left alone for short periods of time. Whereas previously they had wanted someone with me an the time because my legs were not always fully sorting me, out my blood pressure would drop when I stand. It is a very words feeling to know that something that has always happened like you try and stage, you're legs good you, might not reliably happen. What you thought you could trust maybe you cannot. It also means that support needed going forward if different. Dad and Mark had been working out zebs babysitter and my babysitter, but more I don't need one! I just need something to call in in the middle of the day to check I'm ok and to bring me some lunch rather than have someone in the house all the time. I've also started letting Mark know if I'm moving around the house if I'm by myself and when I'm settled again. A discussion parents sometimes have is how old does your child need to be to be left by themselves...

So today at lunch we had a letter through the post informing us of an appointment at Ipswich hospital at 1.30 today. Good job the post man came on time.  We discussed Ruth's improvements as it's been a week since the operation. She could have walked in but we were unsure how far away we would park. So we took the wheel chair.  We have an appointment in 2 weeks to sign off the next steps of treatment and he wants Ruth to be walking from the car and into the meeting. This is manageable and we will aim to smash this goal.  From there Ruth will undergo X ray therapy along side kemopherapy. This will be a daily treatment of both for 30 solid days just missing weekends. They will have to make the X ray mask after the next set of MRI scans and make the mask to fit her properly. She will end up looking like so super hero for the treatment part. It will only be worn during the 5/10 mins of treatment a day.  She shall then have another scan to see how things lie after a month ...

Sleeping arrangements here have always been a bit all over the place, Zeb does not like being on his own which has meant for the last year r so he had spent part of the night in our room.. he doesn't find in our bed, there is an air bed on the floor that he speaks into and sleeps on. When I came back from hospital Mark and Zeb slept on our sofa bed together and I had our bedroom and to myself. Wiley this was nice in many ways after the most hospital I also found myself getting a bit confused about what time of day/night it was and I was struggling with this anyway. Last night they came back in my room and it meant I know it was night time not get up and find a sandwich time. So we allslept better. Taking of sandwiches of you are local ISH to us then the gift of a posted lunch would be most welcomly received, I bag in enough about sandwiches and cake for you to know my best foods!!!! And it would help Mark cover the Ruth babysitting rota if someone was dropping by midday.

We had our post op meeting at addenbrooks this after. This meeting had its good points and bad points and I'll try my best to be as simple as possible Good news is, the large tumor has been removed. God is good and we thanks him for the surgeons who worked on Ruth to clear tiny out.  However there is some quite bad news to follow that. Another tumor was found. This one was in a very delicate place on the brain that if tried to be worked on had immense risk of Ruth losing the use of one side of her whole body. The brain is so delicate. This one is a grade 4 tumor and is aggressive. The tumor is also uncurable. He will be there for good and we have appointments made in Ipswich to see if we can do kemopherapy or radiotherapy to help Ruth out. These treatments will not remove or shrink this tumor. The treatment will be to try and give Ruthie the best life possible with the condition she has.  We do not know time scales and things and neither do the experts. All they will aim to do...

I feel like we talk a lot about tomorrow. This tomorrow is our appointment at Addenbrookes where they will tell us about how the operation went and what the ongoing treatment plan is. It's a bit of a treak to get there but it's f good chat time for me and Mark, and risky m toLYPICALLY enoughY IS RIGHT OVER SCHOOL PICK UP up time (gone all capitals there sorry) but thankfully dad's to the rescue again. Mmm my nursing staff here have been incredible, I've wanted for nothing. Dad's and Mark have ensured that patient rest and nutrition have featured highlyn, they would both be good y health care professionals 

What a day it has been. I write this as I settle for sleep.  Ruth has had some lovely visitors today. Her brother, a Chaplin and out friend Jules.  Ruth had an MRI scan yesterday and after reviewing the footage they were happy to make the call just after lunch she could go home. I received the call and they said we want her home, so the soon you can get here the better so they could release her.  Brilliant, I shot off from work and made a dash down the A14/A11 with no traffic. I'll arrived at 2.40pm. they were surprised on the ward I was there so soon.  Then the wait for release began. And went on, and on, and on.  After chasing for the freedom letter a few times we had a chap who looked quite important and was very sorry but he had called pharmacy and the were sorting the meds at that point (7pm). He said it won't take long now.  Shift change came and went at 7.45 with still no sign of meds arriving to release Ruth. I went to see the new shift about the me...

Ruth has returned to the ward. I have just had a call. She knows where she is. She is groggy and sleepy but praise the lord she is back on the ward.  It went ok as far as they can tell but will be doing scans in a few days to see how things lie Thanks so much all

Good evening, It has been quiet on here today so here is a brief update from what we know so far. Ruth went into the operating theatre at 11.30 this morning.  We have had a group of people praying through out today from all over the place which is so reassuring to us that God has this whole situation.  I called to ward for an update at 3 o clock but Ruth was still in surgery. I called again just after 6pm to be told there are no updates and she is still in surgery.  As I write this now Zeb has only just gone to sleep after some megga worries about fires and wanting to be with his mum. He has so much to deal with so please pray for him through all this.  I was told to call back in a few hours to what the latest was then  If you have a faith and believe our great big God can be with her and the surgeons that would be great. If you don't, no problem just thanks for your whole hearted support through this I don't know when I will update again but not until I know wh...

I can't work out what is publishing properly so some of this might be repeats. The nurse has said I'm second on the list in the morning so mid to late morning. A consultant has said first thing afternoon. My tummy says rumble rumble. The doctor brought me a beef and tomato sandwich at about eleven last night and told me to eat all I wanted before twelve. Well as you can guess I took up that challenge! I'm now hooked up to fluids so going for a wee is a challenge. Will be easier in the day when people are about more and it's less disturbing of others sleep for me to move around. I'm feeling at peace. Would always like more sleep but can nap away all day tomorrow :)  The bay I'm in is a mix of people post surgery recovery. It's opened my eyes to how I may be in the next few days. Even though they like to get you home within four days the first couple of weeks you are not really yourself and it can be up to four weeks to get a bit more normal. There may be a sl...

So I'm here and in my bed! We got here as they said and turned up where they said. Where we were asked to wait. So we waited as requested. After a while the bed manager came to see us to let us know that they were waiting for people to be discharged before there would be a bed free so to go for a wander and return to a different ward in an hour where there should be a bed. Thankfully there is an M&S food on site so we have that a little visit and after a sit outside returned to the second ward. Within ten minutes my bed was ready! And I'm in it! It is still a neurosurgery ward, just the other one to the one they thought I'd be on. So I'm happy. I'm in a bay of six. From what I can work out four of the other ladies are in various states of post surgery. Lots of dozing going on. Mark had to leave pretty quickly after we got on the ward as one of the other ladies had a visitor and it's only one at a time. But we'd had plenty of time together with the waitin...

So I suddenly came to from a dream in which someone was being bludgeoned to the head, can't think where my subconscious was getting that from!  So while I'm awake I thought I'd put some things in here that people could be praying if you'd like to. If you've ever met Mark or I then hopefully you know that we are Christians and that our faith is a central part of our lives. This means that when we face joys and challenges in life we choose to face them with God. And so we, and those Christians we know, talk to God (pray), about those things. Please pray for: - a miracle. I long for them to open me up and tiny the tumour has gone. God has miraculously healed. He is the only one who can. - full tumour removal. God has given those surgeons the ability to do it so if it's still there when they open me up the best result is to get it all out, although with brains that is tricky. - peace. Obviously our feelings are all over the place. But we know that God is the only on...

Is clear!

If you live in my body unwelcome you get given a name. I currently have a fibroid called Felix. Felix was about to be evicted when other more important medical stuff came up. They had tried to evict him once but he is stubborn and we were talking about the next exit. But these things happen. We let Zeb name my tumour and he called it tiny (wishful thinking I think there). This does mean that I sometimes have Zeb chant at me 'tiny tumour boo to you, tiny tumour boo to you.' I'm very glad that Zeb doesn't have a functional sword coz one of the other things he tells tiny is that he is going to chop it out with a sword, and if you have met the crossness a seven year old boy can produce you can't always be sure if they mean what they say! 

So Mark is at a meeting to do with Beavers, Zeb is fast asleep and I'm waiting for the lovely Tesco delivery driver to bring the shopping. I had a weird experience this afternoon. I often nap and doze witha bit of TV on in the background for company. I must have properly dozed off this afternoon. I woke up completely confused about what time of day it was, why I was in bed and could hear cows mooing, whether I was at home on my own. I was sure it was the middle of the night, I was in bed after all, waking up. But there was a little bit of light in the sky. It took me a while to come to properly. Thankfully at that point Mark came home from work and I was able to slot the sense into place!

7am tomorrow morning I have to take my PCR, I've had a text message from the government to remind me! And then take it straight to a priority postbox. Although I'm not quite sure how I do that if I'm isolating! Good job I live with a lovely husband. And then we separate off in our household as much as we can. We've worked out how I can get some things done during the day while boys are out to try and ease the pressure when they're back, so I'm planning meals this week that can all be prepared during the day. We're going to try a chicken cobbler one day, gotta keep trying new things, move forwards. If you ever need to know shortbread fingers dipped in a little pot of custard makes a great snack. I have a nice tub of mashed potato in the fridge ready for my lunches this week. I need custard and mash this week. Food still dominates. I even wrote on my list of things I could consider today 'stop eating'. I didn't consider that very well.  People cont...

I woke myself up laughing to a dream. Proper laughing. The thing is dream wasn't even funny! Then I remembered that a lovely friend had delivered the most incredible apple pie yesterday. But I couldn't remember if I'd left the edge straight when I went to bed. Cue a little giggling middle of the night apple pie eating. Yum!

I love a hat! Despite there hair squashing ability I love a good hat. My dad makes lots of hats every year to go in children's shoeboxes for Christmas. This year he offered to make me a hat and it is gorgeous! I'm not sure this photo shows the colours properly. I go for a walk around our close everyday and since I've had the wonderful hat I wear it on our walk even if it's not hat coldI love it!

I have been in a lot more pain the last couple of days. I was describing it as sensation as that is what it was too start with. I was getting more different sensations in my head. But now it is definitely pain. I have slow release morphine I take twice a day and then liquid morphine I can take through the day and paracetamol. I have an app on my phone to log when I've taken the pain meds coz they run out before I can take the next one's and I forget when I last took them. The trouble is I have to remember to log taking them!  Sleeping is troublesome at the moment as well. A lot of the night is spent awake listening to the rest of the household snore or sniff with their snotty noses. I've struggled to sleep since coming back from hospital. I don't know if it's as a result of all the drugs or a left over of being woken several times a night in hospital (how I'm looking forward to that happening again) or who knows what. There are always lots of thoughts at that ti...

We have been fortunate to have been lent a very lovely wheelchair. I can't walk so far at the moment so it means that I can still go out a little. We used it recently to go shopping. It is a good chair. It folds down all small which means even in our little car we can get it and us all in. It has those handy foot plates so my feet don't need to drag on the floor. It goes up and down so quickly! Zeb worked out how to do it straight away. I have two pushers, one of whom is very enthusiastic but not so directional! But I am happy that Zeb wants to help me around, that he understands why, even if it might mean a few very near crashes and one near tip out. My other pusher does a good job. It's not until I've had to be pushed in a wheel chair that I've come to realise how hard it must be to do. Not always necessarily the physical pushing but the placing. We have had a few 'please can you remove me from that gentleman's bottom space' moments when Mark just hasn...