Brailsford family updates

 I'm typing this in my phone n the dark sat in smalls room waiting for him to go to sleep, so expect lots of mistakes living with boys there are plenty of those around here but that's not what I'm in here to talk about. One of my favourite parts of getting ready in the morning is putting a small squirt of perfume on, mostly because I know that the next thing that is likely to happen is small boy give me a hug goodbye And i know that some of the smell will transfer to him so he carries me with him throughout the day. I used to love when that happened with my mum's perfume, it meant if felt a bit lonely during the day or missed her it felt like she was with me, in fact the tale end of her perfume bottle was one thing I hoped would be passed on to me when she died so I could imagine her with me if I needed  We went to bressingham steam museum at the weekend, on one of the train ride we were in the carriage behind the engine, every whistle toot sent a flurry of smoke into o...

 Well at least not growing anymore unknown peppers, but still enjoying things grown in our garden like delicious tomatoes, I've also been enjoying the sweet little tomatoes from other people gardens, that they've brought me with my lunch delivery, I've not been stealing them, we only seemed to grow big ones this year, but I do enjoy a cherry or plum tomato too. Last year we grew some so small we could barely hold them to pick them. Fortunately for me I was the only one who liked them so any that got picked I got to eat! We had an oncology consultant appointment this week, where we found out that the tumours have grown, we do now have to think again if we want to start ay treatment again or if we accept that these are the circumstances and it's not worth the side effects but better to enjoy family life more.

 This year we grew a pepper. We have previously had an allotment as well as growing a little in the front garden in veg beds. We had to give up the allotment as we found that we didn't have enough time to commit to it, especially as I became more unable. So we went down to just the veg beds. We had a great crop of strawberries and peas, not that Mark or I got to eat many of them, the small had most of them on the way to school or when he got back, turns out fruit and veg is more appealing when you've helped groww it and can eat it straight after you've picked it. So what does this have to do with a pepper. I'm led to believe by those who know about this stuff that peppers are tricky to grow, require the exact right conditions and lots of the right love and care. We did not plant any pepper seeds. Our tomato seeds came from one of those kits for children to encourage them into gardening that has a plastic tub to grow them in a compacted pad of compost that you add water ...

When I was little I had a comfort blanket. It was yellow and knitted to a lovely pattern. It had been knitted for my older brother when he was born two years earlier and was made as a pram blanket, in the days prams were prams. just to give you an idea of the size. When I came along I took a liking to this blankie, and one corner of it in particular that I used to 'blank' as my family called it. This means rubbing a particular piece of it with my left thumb and fore finger. It had to be my left as I sucked my right thumb. I wore this blankie around my neck. couldn't sleep without it. If I needed the loo in the night it came with me to keep me safe, not sure what I expected it to do!! I couldn't go to sleep without it, it went on play dates and sleepovers with me. I did not like it if had been through the wash as it smelt and felt wrong. Long before I met Mark I decided maybe it was daft for a grown woman to need a security blanket but i couldn't sleep without it, so...

 I get the feeling this might be another rambling one, I apologise now, it was going round my head in the night last night and has swimming there since. Thank you to those who engaged in the last post either by direct comment or by getting in touch with us personally. We understand that not everyone is interested in our faith stuff but hope it is an encouragement when mentioned to those interested. This one starts with thoughts about something to do with church. When I am well enough I have the privilege of helping with a top up shop that is run at ST john's church on Caudlwell Halll Road on a  afternoon. They are given a lot of food that is near it's use by or best before date. Anyone that wants to can come and pay £2 and fill a bag up from whatever is available. In the middle of the night this had me reflecting on use by and best before dates. we have to follow certain protocols around these to make sure people that come know if something is likely to be near it's date. I...

  We have asked our vicar, Mark Prentice, to write this one for us as we were struggling to make the words in the page make sense. I think he's done a good job of it though. If you want to hear more of his wisdom you can drop in on the 'Mie vicars blog' just search that bit in speech marks to find it. If you're local to us visit at Andrews church on Britannia road or st John's church, Caldwell hall road, both have services at 10:30 on a Sunday, or join the live stream on YouTube or the church website. Or you can catch up on the live stream in the week, I often do this when I've not been well enough or awake enough to get to church or watch live. What do we do when life is out of control?   Not just when it  seems  out of control…  there are days like that, when the problem lies in us.  The chaos is within, and it prevents us from meeting the circumstances of our lives in an ordered way.  But what about when the chaos is outside of us?  When life i...

 My dad was an avid reader as a child, he still is now. Probably some of where my child gets his love for books and reading from. If he's not watching TV he's got his head in a book. Anyway the first time my dad came across the word misled it was in a book so he didn't know exactly what it meant or how to pronounce it and thought it was mis-lll'd, rather that miss-led. Correct me if I'm wrong dad. Anyway it has been brought to our attention that we may have accidently misled you. Apparently it was not clear from the previous couple of blog posts what it going on for me health wise right now so I am going to try and clear that up now. We saw my consultant again on Friday. I say again, it's the first time in a while we've seen him as we keep getting bumped to his assistants' list. We  are told she is not far away from becoming a consultant herself and that if you are going to see anyone other than our consultant, she's the one you want to see. Anyway, ...

 I have to admit, I wrote this about five weeks ago, in a notebook I take to church to write down anything from the sermon or service that I want to think about more in the week. I've only now got round to typing it up. My ears were still listening even if my hands were busy. If anyone's interested it was an Easter Sunday sermon, with a title or theme of Jesus is Lord overall, based on John 21:15-25, when Jesus reinstates Peter, or breakfast on the beach as it is often titled in the Bible. I don't think I'll talk much about that, so look it up in a bible or bible app, if your interested.  Now, onto what I wrote during that sermon. If I'm not writing notes, I generally crochet or knit during church. So far, no ones told me they mind me doing it. I tend to find that if my hands are busy my ears work better. When you know you're going to be having chemotherapy, possible side effects is one of the things you naturally think about. I hadn't realised that there ar...

 looking at the stats of how many people have visited our blog (BECAUSE I am that egotistical!) it would appear that people are expecting an update (we can't see whose been for a look, just how many people) So at long last here it is. I'm trying to think of what we've done since either of us last wrote. We had a hospital appointment last week, and sadly found out that the remaining tumours have grown. Apparently this means there is no point carrying on with the treatment as if it hadn't started to work by now it's not going to and I was having the full whack I could for the kind of tumour. They were saying they want me to have the best quality life I can at the moment, and the treatment did make me fairly ill. On that note we are trying our best to have good family times. When there's time we enjoy a little game together between tea and bedtime. I try to save energy where I can for us to do things at the weekend. We love booking holidays! I am one of those peopl...

I realise it's been ages since we've written here. And to be honest there is not loads to tell. I finished my five days of chemo tablets. And the course of radiotherapy. They left me wiped out, still am and still get quite nauseous. I have plenty of tests a day which helps some, but everytime I get out of bed I feel like I should be getting in for another half hour at least. We saw the hospital doctor yesterday who has prescribed some different anti sickness tablets. Hopefully they'll help nicely too. Unfortunately I've had a couple of in grown toe nails which have now become infected so we've also added anti biotics to the concoction of tablets I take. And lucky me it's another med that can cause constipation. I think most of what I take at the moment either causes it or treats it. Mark continues to be Zebs and mine stalwart. I honestly don't know how we'd be getting through each day without him at the moment, practically and spiritually. He currently d...

Well the news from last weeks hospital appointment is that as of today, in fact twenty minutes ago, I started back on the chemo. It's the same kind as before but s much stronger dose which comes with much stronger side effects. It will be a six month course. Taking it for five days and twenty five days off. It has to be timed carefully around food and the anti sickness tablets I have to take. So to be eating breakfast by half past seven I have to be awake and taking the first tablets by half past five. This will mean the ever patient, ever serving Mark is also awake at that point as he makes sure I've got all my tablets right. If we look even more wiped out/tireder than normal, it's because we are getting even less sleep than normal! Then it's at least half an hour until the next tablets with another half an hour until breakfast. And I get hungry in the morning. So have to watch myself that I don't start to get hangry! (Dad, that's when you're so hungry you ...

I had two letters from the hospital this week. The first one confused me a little as it told me that my next appointment was the date of the last appointment. I couldn't work out how I could have an appointment on a date that had already been. Then I read the rest of the letter and realised that it was a summary of the consultation we had on that date! Then later in the week another letter came from the hospital with a new date of a week on Friday, that made more sense. Hopefully our actual consultant will be well then as he was off with COVID for our last appointment. We've been looking at holidays for the year ahead. Which is nice to have something to look forward to. I think the planning part of holidays is one of my favourite parts, thinking about what we're going to do, take, etc. How far the beach is from where we are staying -is generally quite close as Zeb and I love a bit of holiday beach time, especially if it's a sandy beach. This holiday we're staying in...

 Unfortunately Mark and I have both had positive lateral flow tests. Mark before the weekend, and me today. On the positive side, so far neither of us have felt that poorly. Itchy throats and that's about it, I've been more tired than usual but that could also be ongoing medication/treatment side effects. The other positive is that with the extra time at home we've had more time together without a child than we would normally get, being able to fun things like play board games when we have the brain capacity and have a conversation where you don't have to watch what you're saying as there are small child ears that miss nothing wigging around. On the not so positive front today we had to cancel a foot care appointment to sort out a couple of funny toe nails that they want dealing with before the next stages and an acupuncture and relaxation session I'd been gifted. This can easily be rearranged, but we where already on about the third arranged appointment what wi...

Which one to start with. Let's start with the good, hadn't the sunshine been so good to see, making everything so bright. The daffodils I see seem to shine brighter in the sun. There is a house I pass regularly with daffodils lining the path to the front door, even I see them they just make me think, happy, cheerful. And so onto the pretty. Aren't the spring flowers coming out just so pretty. Magnolias are my very favourite. I never want a magnolia as the clear up when they drop their petals would be easy to much. But they are so pretty, even in bud. We generally keep flowers out of the house thanks to hayfever. The bed isn't so bad, I was just reflecting yesterday on the state of our pavements. Between ironworks, tree root damage, wonky paving slabs, pot holes, bits of stick and the angle of driveways. As good as the scooter is and as thankful as I am for it. I felt all of these, and my back continues to feel them today. Another bad is Mark testing positive last night,...

So we're just back from seeing the doctor at the hospital. The scan  shows no difference in the size of the tumors. They want to wait until I'm a bit more well and then will start me on a six month course of chemo, with a cycle of five days off tablets. 25 days off. This will be a stronger tablet than I had before. 

 This will probably be a bit rambly, I don't really know what I've come here to say but thought it had been a while so should maybe have a little update. I had my follow up MRI last Saturday. Thankfully the scan itself wasn't too traumatic. They had to inject a contrast dye at one point but the poor radiographer couldn't get in my veins very well, so that became painful and I was left with lots of bruises. They always struggle to get needles into me, even the phlebotomists. We were sat waiting for quite a while for the appointment. I never understand why they don't get someone more expert to put a line in while you wait. When I've been staying in hospital and gone for a scan one of the things they have to do before you can go is make sure you have a canula. We gett the scan results tomorrow so will find out what effect the treatment I've had has had and will find out if anymore treatment is required. I'm still fairly heavily feeling the side effects of t...

We have very generously been gifted s mobility scooter, so I am now independently mobile! The timing is perfect as it means I can get Zeb to some of his half term activities. Mark is really busy at work this half term. Sometimes he ma manages to take bits of time off for dad and lad time or to help me out with getting Zeb out and about as we tend to book a few activities in in the holidays. The local council here run a scheme in the holidays where they have free activities it you sign up to their free fitness card well out course we've had Zeb signed up from as young as he could be,v free is our favourite price and every holiday since he's had fun doing things like football training. Trampolining, tennis, roller skating, athletics and I've found it handy for him to try out new things thatbi wouldn't necessarily want to pay for in case he didn't like it or decided not to do the whole session. Martial arts in the morning mark can get us there in the morning but u thin...

I'm not going to publish to the internet the actual dates of hospital appointments I have coming up, even my muddled brain can think that. But by the end of next month I will have seen the community physios to try and get some strength back in my legs. They are doing better than they were but I could do with some exercises to get them stronger. I have a check up booked at the GP,'s it turns out they do s cancer care support appointment just to check in and make sure you're doing ok and funny need any more support. I have an MRI booked so they can hire effective my treatment has been, which is followed s few days later by seeing my consultant to find out next steps.  For now, in in the 7-14 days post treatment where side effects are meant to be attending worst. I'm struggling with tiredness and nausea, but recognise that it could be much worse so an grateful that so far it hasn't been. God is good.  Zebs class held s science of fair this week that we were and to atte...

So we're home from our little family holiday at centre parcs. I wont give you a blue by blow account but safe to say pottery had been painted, walls climbed, teddy bear stuffed and sewn up, pool balls potted, water swam in, crazy golf golfed, pins knocked down, wildlife watched, lake boated over, tea drunk. pancakes and waffles eaten, winter light trail explored, time spent with family. We decided to hire an electric scooter and it made such a difference to how much I could join in with, and on Mark as he didn't have to push me in the chair quite so much, meaning he had more energy too to enjoy other things. We are now starting to consider if we get one for me use generally. The independence it gave me was fabulous, which also boosted my mental health. So we're thinking of I can manage to get myself to little Tesco for example if we need milk, I'll feel like I've met us contribution and Mark have to think when a trip to the shop fits in his day. We'll also be ab...

These are bell ringing last treatment photos   one of us will add words later  but for now  it is done! The radiologists were very kind and let Mark and Zeb come in for my last treatment. They got to come into the treatment room and see me set up on the table. Zeb was even allowed to press some of the buttons, things like lights out button and the green button to say the room was clear so the machine could start. They then went round to the control room, where they watched everything that was happening on the computers and to me as they have cameras in the treatment room to keep an eye on the patient. apparently it was the best day ever! . The radiologists were all very good and patient with him. They are a fantastic team and have made my daily visits much easier than they could have been. A real credit to the NHS and Ipswich hospital. I rung the my treatment had finished bell! Zeb and Mark got a little ring too,...