Brailsford family updates

    I'm not going to write after every zapping, it would get dull for you and me. The mask was less tight this time. I has the same radiographers and they had remembered. It was still tight, just not uncomfortably so. Of course as soon as it was and I wasn't allowed to move, everywhere wanted itching, but I just had to keep still until it was done. So it was eyes shut and take myself off to the beach, it's how I cope with these machines. I had my first chemo tablets today. I didn't like swallowing them. Pertly because they are big ang partly because even though they will do good in the long run, there is other stuff they can do too, and unlike the radiotherapy these ones can kick in sooner.  good job I've not got a lot to do at the moment and I've got an army of helpers. Today was 'super dad' as my nurse calls him, turn. He was on taxi and then back to his for lunch. Tasty. I have to move onto a clean diet now, all sorts of things I can't eat...

 So the first time was all ok. My consultant wasn't in so I couldn't have the appointment I was meant to with him, I had to just have it with our wonderful nurse. She gave me my chemo tablets, anti-sickness tablets and some anti-biotics. The anti-biotics are a kind of preventative treatment. And the anti-sickness have to be taken an hour before the chemo ones. The chemo tablets need to be taken two hours after food and an hour before food to ensure they are absorbed well. We are going to have to rework our morning timings to make this work. The x-ray therapy was ok. I had a consultation with one of the radiologists first, who explained that the side-effects are cumulative and so it will be about half way through the treatment that I will start to really feel the tiredness and nausea. For the actually treatment I had to lay on the couch thing that goes into the machine. My mask was fitted over my face. It was actually really tight, and felt tighter as it it went on. Apparently t...

 Before I write a post here I tend to have written it several times in my head before I commit words to the page. I feel like this should make me more coherent because I've thought it through, but I think it actually makes me more rambly. Z went to sleep the other night telling us that he was simply having a wonderful Christmas time. It warmed our hearts to hear him say it, especially as we knew he meant it and wasn't just quoting the song! We had a bit of change of plan on Christmas day. Our original plan was to spend it just the three of us, but a week or so before my brother and his family invited us to theirs for dinner and my dad and his wife invited us for a bit on the afternoon. We really enjoy Christmas to ourselves, but appreciated and accepted the invites so that we could spend some of the happy day with loved ones. Then on Christmas eve I started to feel  a bit funny. I spent a lot of night up and down to the loo, so didn't sleep that well and was feeling effects...

There's no new news, the plan as Mark set out is still as stands, start treatment on the 30th with the x-ray treatment at hospital, and the chemo and other tablets to combat the side effects of the treatments to be taken at home. At the moment we only have appointment details of the first one, we know that the others will be on every following weekday but no times yet . I just wanted to say here we have an amazing specialist cancer nurse. The last time we saw her, probably a fortnight ago we must have mentioned mark's birthday was coming up. The first thing she did when we saw her this week was give him some cake she'd made for his birthday and give us a ginger bread Christmas tree she'd made us. She remembered a passing comment about a patient's husband and took time out of her own time to do something nice for him. She is generally very kind and caring and is concerned about us as a could and a faculty not just me and what's happening with me. I am generally v...

We have been to see the specialist nurse today regarding future plans now Ruth's mask has been created.  Ruth shall be starting her treatment on Thursday 30th December. From this point on Ruth shall be on chemotherapy tablets daily for the next 42 days from starting treatment. And will be attending the woolverstone Macmillan area for her X ray treatment Mondays - Fridays. For a total set of 30 visits. The times for this week day treatment won't be the same everyday. It will vary but we won't know the full time table until she is at her first appointment.  We have been offered from church that they will set up a rota for taking Ruth to her visit and bringing her home to take the pressure off me and roger every day she needs to go. Like we have said in the past this will be a quick visit as the treatment only take 5/10 mins and with planned arrival times she won't be in long each day. Thankfully it is all in Ipswich and we live very close to the hospital.  The nurse is ha...

No. Not r treatment one. Mark and I had both forgotten that the next appointment we either have either be with Judith, the brain tumour nurse specialist. She rang today to make that appointment for next Wednesday. This is just for her to check your we're doing and to take through everything again to make sure we definitely understand the treatment and side effects. She says that she had nothing to do with making treatment appointments but she needs to see us and make sure all is well. It feels like progress. She is a lovely lady, we've met her a couple of times before. And a complete expert in all we're dealing with. It will also give us either chance to visit the support center at the hospital and maybe even book ourselves in to some of their services. School holidays have started here for us. Which means the challenge of child care, I normally sort this but Mark had taken on the burden of responsibility this holidays. Today my brother and sister in law came over. They dro...

It has been a slow time coming with making progress on the bathroom.  Even this morning it was a huge struggle to help Ruth and out of the bath tub.  I decided at the weekend, if people won't come to us, I'll go to the companies. We visited 2 companies on Saturday and got a design lay out drawn out.  However, it turns out there is a real shortage of bathroom fitters. I think they have all become HGV drivers maybe. I had both companies say they couldn't do anything til may/June. As you can see, that I'd far too long to wait and we need to get Ruth her independence back fast.  I was told to try and put the job out into a place where trades people looked to pick up jobs. With in the day I have a message back from someone who saw the post and the situation we found ourselves in. He realised he wanted to help us and to help Ruth get some sort of normality back for her. I met up with him today and finalised the plans to turn our bathroom into a full on wet room. We only ju...

I'm finding that with an arm off my glasses i can never quite see properly as I either have my glasses off for comfort but then I can't see properly or I have my glasses balanced in my face and then I'm not looking through the proper part of the lenses so u can't see properly. They are just normal distance glasses but I remind myself of my mum when she used to get new variegated lenses and would try and find the sweet spot to look through. I'll get used to it coz I have to, it's just frustrating in the mean time! And taste. When I had COVID over a year ago I lost my sense of smell and taste. Like many I found it really odd coz they go completely, not like when you have a cold and you lose them slightly. They came back. But I've found recently that they've gone again a bit. So I'm taking delight in the texture of food. Mark leaves me reach day with a pot of crunchy veg and breadsticks, party rings, that kind of things. Things that give flavour and tex...

We had a phone call yesterday afternoon with try appointments for this afternoon at Ipswich hospital. Fortunately dad was free to take me and be with me so Mark court do the school run. The appointments were a last MRI scan and the fitting for my mask for x-ray treatment. I'm not sure I'll get used to MRIs I just tend to close my eyes. I got really cold at this one. They had to inject contrast due, which they normally do but because I hadn't come the ward I didn't have s canulla so that just to find s curb, ouch!I find they often talk to you as they are doing the MRIs but that it can be really hard to hear what they are saying. This time it was much easier to understand and they found my one and glasses fairly amusing, especially when they kept falling off and they played Christmas music for the duration so an additive much more pleasant experience than normal. Then it was the mask fitting, so a little trip down the corridor to get you to the woolverstone wing and a sor...

Today Zeb has been out with auntie and cousin at the transport museum. He had a wonderful time riding the buses and seeing Santa and grabbing choc coins off small trains.  Meanwhile me and Ruth had a chance to do some craft together. Ruth signed us up to a zoom call in making Christmas cloches. What is a cloche? I hear you all say. Like a snow globe without the slowly falling glitter.  We have a lovely time doing this and now have some lovely Christmas decorations for the house.  It's Armstrong family Christmas next Sunday so now it's wrapping presents and listening to the F1. 

Not mine! My glasses. When I was in Addenbrookes they recognised that the right arm of my glasses was rubbing on my wound. Pparentlynt this can often be a problem, not always my glasses per se but the glasses wearer. Theytried to remove it but couldn't so we borrowed some small screwdrivers and took the arm off wappingg the end in surgical tape it is more Comfy but I do feel a little Jack Duckworth! Worth it in the long run though. Mark has carefully put the glasses arm and screw in a safe place so that when I am more healed it can ask be put back together. 

So we had another appointment with the consultant at Ipswich hospital and the brain tumour nurse specialist. They confirmed that the plan for my ongoing treatment is x-ray therapy and chemotherapy both for 30 days will be every week day for that period of time just on week days starting in the new year. For the x-ray therapy I will have my own mask that will direct the rays to the remaining bits of tumour to kill them off. The chemo will be a tableta day. These treatments will of course come with side effects, that I'm not looking forward to but the treatment is needed to get me fully well again. The job for now is to get myself as fit as possible so that my body is best set for the treatment as it can be. While we were at the hospital we were also shown to the cancer support center. It is a great centre. We have been able to borrow some books for Zeb to help him understand me what is going on and we've been referred to the family support person who will come and spend time sup...

I do have occasional moments where I think 'they operate on my brain, actually cut it open' wow! How amazing to have the skills to do that and to have done it in such s way that my brain largely works afterwards. I think that is so incredible!

So it took time to get released from hospital (again) bit we got there and I'm now home and in bed. I can't fault any of the staff at Addenbrookes, they were all great but they were very understaffed and had things they had to be doing so I understand when breakfast either comes really lateor doesn't come at all and when it takes an hour to get a letter printed. They were all really caring and wanted the best fit each of their patients and whether hard for the best for each of their patients. We arrived back in time for Mark to pick Zeb up from Beavers which was a weight off marks mind as he does with about being late. Add I've now had my hug and am in bed smelling sausages cooking as Mark makes his tea, going there might be enough sausage left for a sandwich for breakfast. I did tell them as I left addenbrookes that if I had to stay in hospital again I'd like to stay in Ipswich coz it makes it much easier for us for visitors and having things brought in. All main l...