Hello to the night shift.

Registrarthank Georgette

Nearly didn’t get out but junior

Doctor ask Registrar if I could go.They wanted to keep me another 24 hrs for obs

because the Antibiotics had finished.All good change there mind and I got out.

Did say it was special birthday week so that helped.Great nurses they deserve a medal

in my opinion.So much better at home caught up on sleep which helps.

Had  occupational therapist  Come today to see if they can help,got a few rails to help

with walking.Must get a stick now yuk put it off for ages.I have a scooter which use now so I have to bite

the bullet and use a stick.

Lost my hair started in hospital so off it came today looks like a smurf but it’s ok getting use to it.

take care xx

Hi! 

I think I missed the night shift by sleeping all night long. Woo hoo! 

I am so glad you’re home but my, do you paint an attractive picture of yourself. A Smurf with a walking stick, eh? I must look out for you. 

I had to start using a walking stick nearly a year ago and like you, I was reluctant. It is a pain in the neck to have to remember it and a nuisance if you need to carry anything. But it does have its uses. I do a good line in pointing to things imperiously with my stick. I have no trouble getting a seat anywhere, any time. And of course it helps me walk. 

I do hope you had a good night. I hope everyone did. 

xxx

Hi Daloni 

Glad you had a lovely sleep nothing worse than all night soo long.

Forgot the stick today walking down garden foot went over note to self serves you right,

Will look more smurf soon got a cotton cap coming tomorrow to help my head on pillow.

mind better than Jabba the Hutt still eating and I could taste chocolate better today.

Hi night owls 

I am awake with pain. Boo! I’ve been onto the hospice nurses and they suggested increasing one of my medicines, the one that deals with nerve pain. It doesn’t work immediately so I’m now in the 24-48 hours of waiting to see if it works or if I need another increase. The evidence so far is not encouraging. 

I had chemo yesterday so I’m also on steroids. That won’t be helping the sleep. 

Chemo was uneventful, hurray! It was all on time and the nurse got a vein first time so I’m not covered in bruises. The only event was my niece’s car on the way home from hospital. It broke down. The heating light came on and so we managed to pull over although that wasn’t easy as we were coming along a very busy road with a red lines. When we stopped cooling fluid poured out of the from of the car and I feared it was a cracked radiator. I got an Uber home for my daughter and myself, cost £46. The AA came out quickly for my niece and did a patch up job to get her home to Norwich. She drove via my house where she cooked supper and picked up the things she’d left behind. Doh! 

Right. Must go. I can hear my daughter waking up. She’s off to Serbia this morning to stay with her cousins. She is taking a friend with her and I’m sure they’ll have a lovely time. They plan to go to a domestic tourist resort where there is a big lake for swimming. I don’t know how much is yet to open over there. But she’ll be with family and she’ll be well looked after. I can only be envious of a lovely summer holiday.

 I do hope you’re getting into the habit of reaching for your stick. I’m glad your fall didn’t cause any worse injury! I look forward to a Smurf photo 

Night all

xxc

Good morning all

Well it's 3:30am, I am wide awake and for some reason can't stop thinking about mashed potato. At least it makes a change from pot noodles.

This weekend will mark 1 year since Larry lymph node first popped into my life. I was triathlon training at the time and never imagined that within 6 weeks I would receive a terminal cancer diagnosis. Oh how life has changed! 

I am quite often awake at this time and to be honest I don't mind one bit. When I think back to how ill I was when I was first diagnosed I am so thankful that the chemotherapy worked as well as it has. I shouldn't still be here, but I am, and just being able to lay in bed under my pile of purring kitties again means so much.

Take care everyone

Georgie  

 Hi Georgie, I'm sorry I missed you yesterday morning, I had been reading some of the posts but I must have changed to my jigsaws just before you posted! I can empathise with how you feel as I was very active before cancer struck. I was an international badminton coach, Tai Chi Instructor, my friend and I were also keen walkers and used to go away for a walking weekend whenever we could and were in the village tennis over 40's team, I'm also interested in gardening! Everything I did was about moving. Now I can't kneel to do the garden and I use a combination of elbow crutches, a wheelchair, a walker with a seat and an electric buggy! I can't believe how much my life has changed. However in saying that, I feel lucky and blessed still to be here against all the odds. This was due to agreeing to take an untested unnamed Trial drug that my oncologist said may possibly give me as much as 6-8 months extra to live.

Well, I took that drug for over three years and then had to come off it. Not because it had stopped working or had a recurrence but because of extremely bad side effects. My oncologist, who I trust implicitly suggested we watch and wait for 3-9months before starting Immunotherapy, having scans every 3 months. I stopped the drug which is now called Dabrafenib in September 2016 and we are still watching and waiting!  Doesn't it feel great to have cheated death no matter for how long, we know it is a bonus we can't take for granted but can enjoy just being here! We are so very lucky and more and more people are living passed their 'sell by' date, it's miraculous!

I actually 'try' not to come onto the site during the night but do Jigsaws (there's a great free app for my iPad & Tablet) and read my Kindle but sometimes I just have a look to see what's been happening in this terrific group of ours and you can see what's happened! I hope you are sleeping now and will read this at a more reasonable time!

 Hi Peggy, Sorry I'm just catching up here and so pleased you got home! I see you said it was a special birthday week! Was it your special day or a family members? I hope it was great! Like @Daloni and you, I too was reluctant to start using a stick and would forget it on purpose sometimes. Until one day I was in my back garden where there are two steps, I couldn't stand on one leg to put the other down the step, I had to shout my husband to bring me the stick and felt so stupid! I can't get away with it now as I need 2 elbow crutches or a wheelchair and the way I look at it is without them I'd be housebound, so now I don't care who sees me!

Im pleased you didn't hurt yourself when you went over, that would have been a hard lesson! Now what's all this about being like a smurf? You haven't ordered a green cotton cap have you!! If you decide on a wig, don't do what I did. I decided to wear it for the first time when my husband and I went on a 5 night break. When I saw the photos I looked very odd, the wig was halfway down my forehead! I asked my husband why he didn't tell me it looked silly. His answer "well, I've never seen you in a wig before and thought that was how it was meant to be"! I said  Oh yes of course, everyone's hair starts about two inches off their eyebrows! He looked at me and said, "Annette you don't have eyebrows"! I was so busy looking at the wig, I hadn't noticed! Lol!

Hi

Happy anniversary! It’s so nice to hear you celebrating. It would be tempting to focus on what you’ve lost but here you are focusing on what you have instead. 

I have had a day go reminding myself of the same. I’m in hospital at the moment with pain and the oncologist I saw today has suggested that I think about stopping the chemo I’m on. It’s palliative so the aim is to help me feel better. It’s not really achieving that. The trouble is that I am not sure there’s a plan b if I come off it. I’d be entering the end of life phase. 

Hence focusing on how well I’ve been for four years since they told me i was incurable. Like anndanv Annette, I’ve beaten the odds and passed my sell by date. In the intervening years I’ve travelled to Iceland, France, The Netherlands, Switzerland and Slovenia. I’ve ridden an electric bike and discovered that I am a dog person. I’ve been to the theatre. I have spoken at conferences and in boardrooms and given tv and radio interviews. I really have had some amazing adventures and met some wonderful new friends along the way. 

So certainly I have no regrets. I can’t think of opportunities I have turned down but I can think of plenty that have come my way because of incurable cancer. Don’t get me wrong, I would rather I hadn’t been diagnosed with incurable cancer. But I’ve made the most of it. 

I can’t help one funny little image creeping in and making me laugh. Like a lot of people I took the opportunity of lockdown to check what’s in my kitchen cupboards. Quite a lot of tins of food that are past their sell by dates. Now I can’t help but think of myself on that kitchen shelf, my label slightly torn, my exterior slightly grubby and serious questions about what exactly one would find inside once the lid came off. Soup, anyone? 

xxx

Hi, I'm so sorry to hear you are back in hospital! I know how much you've crammed into that four years and it's more than most people achieve in a whole lifetime! Yes I had quite a few things in my cupboard that were out of date and my husband threw them away. However one of my sisters found the same in her cupboard and ignored the dates and ate them anyway! She even had Uncle Bens cook in the bag rice that was almost two years out of date and said she ate it all without any side effects. Just because the tin is a bit bashed or the label torn, doesn't mean it can't be useful!!!

Happy Anniversary, how many years are you celebrating?

Hi 

anyone else up? I’ve just posted my lstsst in chemo so I won’t repeat. I have just been woken by the nurse taking the 2am observations. You’re blood pressure is a bit low, she said. No sh*t! I was asleep and lying down. Could you sit up so we can see if we can get a better reading? I ask you? Why am I here? 

xx