Category Archives: Hospital
Musings update
Hello, we are still hoping to get back to Disney this year, but finding travel insurance is proving troublesome, mostly because the tumour is so unpredictable, what they don’t tell you is that with 6 weeks Radiotherapy everything is shifted over 3 weeks, you don’t start getting the side effects until week 3, hair loss, side effects continue another 3 weeks after treatment has finished, brain swelling, loss of use of left side again, not sure if we get to critical mass at 1 1/2 weeks or if I have to wait the full 3 weeks then back up other side. What they also don’t tell you is life isn’t like tv, i’m still waiting to do the fun stuff. You write a bucket list, which you can’t complete due to spending too much time at the hospital, which will only prolong your life maybe a couple of extra months if you are unlucky, you get shafted by scottish provident, because they can’t input dob correctly from proof of id. So called specialist travel insurance companies, won’t touch you if you want to go to USA, no we don’t want to go to Disney Land Paris, we want to go to our Disney World Florida, our happy place, so don’t even suggest it.
Chemo has messed with my bone marrow, so having regular blood tests 😦 and platelet transfusions 😦 😦 not sure how long bone marrow takes to recover, everyone is different. Waiting for Arnold marrow to kick in 🙂 My Dad’s family has a history of making too many platelets but not until into their 60s-70s so I have a little while to wait yet.
Hoping to get back to dressmaking soon, I have two tops cut out one of them is started, a forte top and another larger Plantain cut out but not started. When I got my overlocker, I thought, ‘why does it come with a pair of tweezers, who is going to want to use them to thread, just makes it more difficult’, turns out if you have a brain tumour and Shakey hands they help a lot. Though I wish I had spent a bit more money and got a self threading one, it seems every time at the moment when I want to use it I have to change the thread colour. Though I have made it slightly easier, the same as the sewing machine it has handy dandy diagrams inside, what it doesn’t tell you is which order to thread it in, so to get round that I have numbered up the thread spools.
I’m going to be 50 at the end of next month, so hoping side effects will be finished by then, including looking about 6 months pregnant. Steroids/chocolate. If I was going to have to grow ‘a life sucking parasite’, a baby would be preferable to a brain tumour, even at 50.
Sorry if some of my ramblings are repeated from other posts, fuzzy brain syndrome (side effect). Sorry for calling a baby a parasite, hope not to offend anyone.
More soon…
Radiotherapy
I’m two thirds through my Radiotherapy/chemotherapy 6 week treatment, I have been feeling better than I did before I started the treatment, I hadn’t experienced any of the side effects up until last week when my hair started coming out in handfuls, I expected it to start falling out slowly, not in what seems like one day, I think it has gone mainly from the top half of my scalp, I have to work out where the best place to put the new parting so I can have a major comb over 🙂 , I’m also starting to feel more tired, and I’m fairly sure that I am getting some brain swelling which is to also be expected. I feel better after the couple of days off from the radiotherapy, today I left the bench with a slight headache. I have had my weekly blood tests and they have all been fine. At this moment I’ve had 22 treatments 8 to go.
I have put on rather a lot of weight 1 1/2 stone half of which is the medication the other in eating too much, which can also be blamed on the medication which makes you extra hungry an it also forgets to tell you when you are full up, also it changes what you fancy eating, I usually go for savoury food and sour sweets, where as at the moment, it is cream, chocolate, biscuits and deserts, the fact that it is Christmas doesn’t help, we have lots of chocolate and cake about the house.
Both Simon and I are going to try to eat better this week I’m hoping some of the weight will come off, though obviously with the amount hair I’ve lost I expect to weigh a bit less. 🙂
Medical Update 24th November
We have had the results of the mass/lesion/cyst/tumour, it is now officially a ‘tumour’ I have a name for it and everything ‘little f***er’.
I have seen my oncology consultant twice since getting out of Romford. I think he was a bit put off by the fact Simon pushed me to the appointment in a wheel chair, but the way we look at it is why wear myself out spending 10/15 mins walking from the car to the appointment when I could do that later doing something I want to do.
The treatment options are dependant on my level of fitness, because I was in a wheel chair he initially put my fitness at a 2 which means I get radiotherapy to start off with to hopefully stop it growing too fast. However after having me walk down the corridor, Simon thought he might have changed his mind, which it turned out he had.
We had another appointment the following week, well two appointments, Monday was an MRI which from my point of view was a disaster, I am quite squeamish, Simon had already told them they needed a special cannula putting in person, which they didn’t have, they prodded and poked me for what seemed like 5-10 mins, while I was getting more stressed, they did the first half without the cannula in then pulled me out so as someone else could attempt the cannula, which although went in seemed to take ages while they decided which vein would be a good one. The upshot of this is by the time they got around to the ‘with contrast’ part of the MRI, my left leg was protesting at being left lying around for 45 mins, not only that the bit that usually only takes 2 mins was about 12mins. This MRI was done in the portacabin out the back of the hospital, it was suggested by the technicians that in future we might want to insist on having MRIs at the inside one as it would be less stressful for me. Of course it might be less stressful for them 🙂 an experience that usually takes 20mins lasted over a hour, not sure if it would have done that anyway or if it is a slower machine outside.
Tuesday unknown to us we had two appointments one with the radiotherapy people to create my mask at 8:30 made over the phone and one with the oncologist at 9 o’clock, we had a letter moving the 9:00 to 10:00 so we sorted our morning to get there for 10, Simon got a phone call at 9 to find out where we were, we arrived at the hospital 9:30 where we were whisked off to the radiology department where they made my mask, they spent time getting me comfortable and deciding what to do with my hair. They heated up a plastic mesh in a water bath which was moulded to my face, after about 10 mins they put ice packs on the mask to ‘set’ it.
We then went and saw the oncologist who told us that he thought that I was well enough to have radiotherapy and the chemo at the same time, it will mean regular blood tests, if I get too sick, they can stop the Chemo, to be honest it is the chemo that scares me the most.
After the Oncologist we had to wait for the CT machine to be available, they put my mask on and I then they marked it up, I have a start date of 11th December.
I am not going to spend too much time updating the blog with the medical stuff, which as far as I can work out will probably consist of ‘I’m very tired and losing my hair’
back to our scheduled crafting posts soon…
Update post
Hi, there hasn’t been much stitching done though there is a Doris dress to show off, which I made for my Dads funeral.
I have been taken back into hospital this time I am in Queens Hospital Romford which is the place to be for brain surgery in the south east, I have had an awake craniotomy, which mean that although they take you into the theatre strap your head in, cut it open then bring you round, luckily the breathing tube was out before I come round properly, the surgeon appears to be happy with how i reacted in the surgery then they asked me some questions, because I was having trouble with my left hand, they didn’t get all of the tumour/cyst/lesion/mass. Hopefully there is a chance we get the results of what it is tuesday so that we can then be given a treatment plan, if we need radiotherapy, this can be done at Southend Hospital, my consultant is very nice, he sat down with us for about 45 mins on Tuesday before the operation on Wednesday, I went down for the operation 13:30 and was back in recovery by 17:50 because I was already awake in recovery I just had to wait for a bed to become available, they have shaved a tiny bit of my head from ear to ear they scar cannot get we wet wfor 7-10 days, which appears to be a magic set of numbers.
There what’s has not been a lot of pain mainly kept under control by paracetamol, I am back on Dexamethasone but they are already weaning me off it, the swelling on the right side has already started to go down. My left foot has started to work properly but I am still having a problem with my left hand.
Back in hospital more shopping will be done…
I have bought some patterns from deer and doe, I have had so much use out of the free Plantain pattern I recommend you rushing over and downloading it, to be honest I’m not too keen on the styling on the website too much eyeliner and silly poses but I have been eyeing up the azalea skirt
, bleuet dress 
and the givire dress 
ad I just realised I missed fumeterre skirt,
which I love, of course I can’t do this pose without falling over at the moment, i can dream 🙂
I have also been over to love notions for trendy tunic, 
candence top and dress 
and tidal dress and top.
I also suggest that Michael Powell, cross stitch copyright division get their arses over to Pinterest, up and down the garden path and a couple of others are available to down load which brings me to my other purchase, as you may have realised I have gone back to my other love, counted cross stitch and have picked, Michael Powell secret garden 1
to finish, I had it in the evenweave version purchased from the designer himself at a long ago knitting and stitching show, I picked this one of the many started as I thought it would be easy enough because of the fabric and blocks of colour but enough of a challenge because of the back stitching, so went over to amazon to buy the companion kit the secret garden 2
back in the hospital:-(
hi, yesterday was a bad day, lots of water leaking from eyes and stuff, today will be more positive.although the doctors don’t fill me with too much confidence, we do appear to have a plan of attack, to paraphrase Iron Man the plan of attack is ‘attack’on a good note they might have discovered what caused the original stroke a space invading lesion so all the doctors need to do is get hold of one of the white birthday cake looking things and I’m cured I hope it is one of the lower levels I’m not very good at computer games if it is any higher, my brother Richard will need to blast the retro devil.
looking at this post so far it doesnt look like much sense will be made.:-)
Sitting in hospital gives you a lot of time to think, and I have a new respect for Denise, whom I realised we lost year ago beginning of last week i understand why she spent so much time on social media, and wish I had put more effort into finding the photos, it is amazing the difference between the younger (technology embracing )patients and the older no technology patients. My Dad is upstairs in the same hospital being bored where with a tablet or iPad you can have so much variety and keep in video contact I can play cards jigsaw puzzles read magazines watch iTunes, amazon prime not Netflix for some reason, catching up on Outlander, just watched the Wedding bet you are jealous Liz, I was reading Outlander when it was cross stitch in the UK. I do find it hard to concentrate for any amount of time hence the rambling post. Southend hospital has obviously put some of their immense car parking revenue into the wireless networking, once every one is ‘online’ the media streaming might be not as good.:-) but i am the no waiting generation.
stroke update 4
Hi, good news, they sent me home on monday 21st August, three weeks and 5 days after being admitted to hospital with left side weakness in my arm and leg. Bad news I have the attention span of a goldfish 🙂 I actually wrote this about 5 days ago then forgot to post it.
Monday morning the physios had me walking on a treadmill, and decided that I could walk unsupervised, by 4 pm the early release team had an opening for me, by 7.30 the pharmacy had produced my pills and Simon had arrived to take me home.
Part of me would rather have stayed in an extra day, to be going from being ok to walk unsupervised but with medical staff on hand to home with Simon in 10 hours was a bit daunting. I would have liked to have been given the opportunity to say goodbye to some of the Paglesham Ward staff who had supported me and the Physio staff who made learning to walk again more fun than it probably should have been (Artie I would like my £100 note now).
I am home now, still getting tired in the afternoon, and having a slight headache, I need to go back to the hospital 6 weeks from the stroke to have another MRI, the swelling and residual bruising will have gone down by then. The Doctors are hoping that this will show why it happened.
The early release team is in place to give me support for up to 6 weeks after leaving hospital, they have been to see me and given me a set of exercises formulated to strengthen my left side, I can walk up and down stairs easier every day and even cooked dinner Friday, even though it was only Chilli.
Stroke update 3
Three weeks from the stroke and the doctors are still no closer to finding out what caused it. Tuesday after a good day with physios I had a seizure, which could just be part of the healing process, it isn’t uncommon after a head injury to have a fit. It lasted 2mins I came out of it without medical intervention and didn’t lose consciousness, at least I don’t think I did, I remember the questions and them using the hoist to put me into bed.
I think I have surprised the physios. When they left on the Friday I still couldn’t lift my foot then by Monday I could walk holding a hand. I now just need supervision, but it means I can walk to the toilet and have a shower, which is always a bonus.
Friday just gone I had a home assessment which meant that instead of physiotherapy at the hospital they took me home in a taxi and watched me get around at home, get on and off the bed, toilet and sofas. I also made Simon a cup of coffee, there wasn’t time for me to make and drink my own hot drink. I managed the stairs ‘slowly’ and petted the cats.
Hopefully these are the first steps to getting me home.
Stroke update
Hello since ‘goals for August’ was written I have had umpteen blood tests while the doctors try in vain to discover why this has happened, no family history, no high blood pressure, no stress, not over weight. I have been prescribed a muscle relaxant and had Botox in my left bicep and pec muscles, this is to weaken these muscles to enable me to use them.
Botox in my bicep allows my tricep to start working, because the bicep wasn’t switching off, the tricep couldn’t engage. Botox in the pec muscle stops my arm from being glued across my front. The Botox was done a little over a week ago and this evening I am using both hands to type this post. Botox was done on Friday 4th, by Sunday I could hold the arm away from my body with the other arm, Wednesday I could just about get grapes to my mouth. Each morning I had a little bit more movement. Today I almost have a full range of movement, the fine motor skills still have to be worked on, but I am pretty happy with the progress.
The muscle relaxant to help with my inability to release the large muscles in my legs, apparently I am a good teaching opportunity, most stroke victims have floppy muscles, mine are fully engaged and I can’t switch them off.
Friday the physios decided to attach what looks like a tens machine to the back of my leg, She had me straighten my leg then ran a current through it then I had to practice bringing my leg back what was interesting was with the leg twitch my foot brought itself into line.
Although I still can’t make my knee work I could wiggle my toes this morning.
I feel that I am making a good recovery and can’t wait to go home, medically I’m sound, but once I leave the hospital I lose the daily access to the physios so I shouldn’t be in too much of a hurry.
More soon
Goals for August
Hello, as you see from my previous post Goals for August probably won’t be sewing related, by the end of August I hope regain some control of my arm and leg and if I am lucky go home, so not too much.
I already have more control of my arm hopefully it will stop turning over on its own when I stop thinking about it, My leg is already accepting more of my weight, even if I can’t direct it to do anything yet, the physios seem happy enough, I ‘walked’across physio floor yesterday i say ‘walked’ i operated my right foot, someone else moved the left one I did manage to push down into my left heel.
More later
Musings of a Craft Enthusiast 