6.3.15

Happy Mothers Day!
As a special mothers day gift to myself i am starting a new blog. This one will be closed due to aliens. The new one will be the same, but different!
If you would like a link to the new one please email me at jillfirmin@hotmail.co.uk, or message me on Facebook, send me a text or ring me, or just plain ask.
You are all welcome (although not if you're an alien!) and i appreciate your continued support.
See you on the bright side.

28.2.16

Escaped from hospital, thanks to my partner in crime. He was fab. He gave me a hug when i had an unexpected sob. He brought me hot cross buns and pineapple! We sat and had a good moan, both of us. We have a similar type of head.
First night at home. Chatted with Jane for a bit, mutual virtual hugs to each. Chris and Chloe checked up on me. Then time to relax.
I decided to watch the Voice. Fell asleep about 4 times so gave in to the temptation and slept like a log.
Woke this morning not knowing what I'm supposed to do. What drugs? Anything i should be doing? Soon got my head in gear.
Made coffee, had crunchy nut cornflakes which for some unknown reason had no taste, took tabs, and chilled. Decided to attempt the Voice again.
It made me very emotional, so much seemed relevant to me, but it brought me back to positivity. So I've had another coffee, and had the cheese and biscuits i brought home from hospital. Golly, gee, wow! They hit the spot. Cheese, thats the thing. I need cheese. Mature of course. Maybe some goats cheese with red onion relish. I have gone from a bit low, which i think is normal after 5 days of being attached to chemo, and then being sent home, to cheese! Sounds ridiculous doesnt it?
Answering an SOS, Lyn has got me more crackers, cheese and butter so I'm all set up.
So I've been home a couple of days now and not feeling much better. Mild nausea, headache, fatigue, pain in the tummy (possible tumours shrinking?). Ive spent more time in bed than i should, but its the most comfortable place.
Ive had more messages that i could do without which really upset me, but if it means ill be left alone and not upset further, i will ignore it.
Now to inject some humour! See what i did there?
District nurse could recognise i had no need for any pricks at all, but unless he was capable of the 'immaculate injection' that would be impossible. But instead of 3 he gave me 1. He left the needle wobbling vicariously in my tummy whilst he changed the syringe 3 times. Re-flipping-sult.
And if thats not enough, Sam got me the goats cheese and relish....... i don't know if I'm allowed to put this, but i died and went to heaven!!!

26.2.16

Oh my word.
A dreadful nights sleep. I was stewing over a message from a 'friend'. I can't believe how cruel some people can be. But I'm not gonna waste any more time on that person. Im gonna pick myself up and get back to my positivity.
Today could be my penultimate day in hospital. I can't wait to get home to my own bed, although i will miss all these friendly faces who come and attack me each day.
Im starving! Must be the steroids. My tummy is rumbling and it is thought it is 35 on the Richter scale! A new word I've learnt, borborygmi. Bowel sounds!
Just had a visit from Fergus who commented i looked like an Ewok cos i was curled up on the bed trying to doze. I don't know if thats an insult or compliment!
He said they had the MDT meeting this morning and its been suggested that after my chemo and after the PET scan, and hoping I'm in remission, i will be having 3 weeks of radiotherapy before the transplant. He said this is my last chance of a cure, so they're throwing everything at me! However, if i were to relapse again there is a couple of drugs that have worked on some people to keep it at bay.
Thats mighty scary. Last chance of a cure. It better work!!!
So my first hospital stay, how was it?
The staff were lovely, friendly, helpful, although very busy. The food not so much! The treatment was remarkably better than i thought it would be, although there are aspects i could do without! Constipation, fluid retention, headaches, tummy injections, eye drops x 4 a day, which I've managed to get in my eyes and not on my face now, etc.
I had a nice bedspace, near the window/french doors that looked out onto the garden, and could see Tampax Towers (the nurses home where i lived for over a year back in 1979) from my bed. My Kickman line insertion was almost easy, and makes treatment and bloods so much easier.
I met a lovely lady, Monique who has helped to keep me sane. She makes me laugh. Im thinking of taking her home with me if her husband doesn't mind!
I won't be so worried coming back next time, but wish i didn't have to. But i do so i should suck it up and get on with it. Some people have been through far worse than me and I'm a grown up, apparently!

25.2.16

A fairly good night apart from Glenn waking me at 2am for BP etc, and my regular visits to my paper mache friends which makes my bladder gladder! But I've been retaining fluid so I'm about to be given some IV diuretics, so ship ahoy, splice the main brace and land ahoy, I'm gonna be splashing about in the bathroom! Should make my ankles look less like Rebel Wilson's and more like Cheryl Cole's. Sorry i mean Cheryl Panini Houdini Linguine or whatever her name is!
It seems I'm supposed to be weighed daily (always a negative in my life). Luckily the scales were left within my bed space so I've been doing it, but the staff haven't! And I'm supposed to have daily bloods, and its not been done since tuesday when i arrived on the ward. So I'm waiting for the vampires to come and bleed me! I may be needing a transfusion of platelets (used for clotting the blood). It seems odd when I'm taking aspirin to thin the blood, and heparin jabs every day to thin the blood, now they're thinking of giving me something to thicken it again!
Ive been booked in for the aromatherapist, she's coming to give me a treatment of some description. So excited, i could do with some pampering.
And now for a doze cos I'm shattered.
And of course i doze off and aromatherapist comes and although the HCA said she can wake me cos I'm so desperate for the treatment, she says no don't wake me and goes again. She'll try and come later or maybe tomorrow!!! That was nice!
I did have a visit from the nurse specialist though. Sammy. She's lovely, made me feel very safe and secure. She came to explain about my jabs to stimulate bone marrow to make extra stem cells and the blood tests i need to have after.
This is how i see it.....
I'm home on sunday. Tuesday, wednesday, thursday, friday, saturday, sunday, monday, tuesday, and wednesday. 9 days in all, the district nurse will come and give me 3 jabs in my tummy. Then on the monday, wednesday and friday i have to come to the MIU (Medical Investigations Unit apparently) to have blood tests, through my line of course, no pricks involved! This will then give Sammy an idea of when i have/had enough stem cells for treatment. Then from that she can work out when i should start my next session of chemo so that when my stem cells are ready it will be a week day and not the weekend when the stem cell processing department would be shut. I was surprised at that. I thought it was just a case of in for 5 days, 2 weeks off, in for 5 days, 2 weeks off.
Sorry if thats all a bit too heavy and a bit boring. Its more for my information than yours! My head is a sieve!
So my OCD is such that i have to know everything, and when things are gonna happen, and now i don't know, and won't until 11th march. How will i cope? Maybe aromatherapy will help. And when will that happen?????

24.2.16

So another funfilled, toxin blasted, tasteless food, peeing for England type of day. I don't have time to be bored here, thats for sure.
Ive had a few visitors today. The first being Dr Jack. He comes and sets my mind at rest for quite a few things. He said he believes my chemo will put me in remission but if it doesn't i can have up to 2 more sessions of ESHAP. I bloody hope not. Its not been that bad but i really don't want to carry on this liaison unless its really necessary. Im hoping when the time comes for the transplant he will put my mind at rest about that too. Thats the next thing thats freaking me out.
Then Linzi and Rachel visited armed with sweeties galore and a gardening magazine to work off the sweetie calories when i get home. Nice to see 'em. Brightened up a dull day. They both nicked some of my hospital tissues. They both kept their distance in case of bugs etc.......then when they left i found Linzis snotty tissues on the floor!!! Haha, i'll get her for that.
Then my Sam came to see me. I asked for some squash cos the water here tastes like its come from the Ganges. It could be my taste buds of course......
He came with 3 bottles. Im only in till the weekend! He bought me creme eggs, cadburys chocolate, 2 sudoku books. A family  Sudoku book, and a KILLER Sudoku book - not the best type of book for someone with cancer!
A parcel had arrived at home for me which he brought in cos he thought it would make me smile. It was a framed photo of my son Joe and his partner Jon.

I liked the photo and asked if he'd get me a copy, he went one better and had it framed. I love it.

So after a bit of humorous abuse from Sam he left me to watch the BAFTAS. Just getting to the bit about David Bowie and i was told i was moving room because of a male admission. I was moving in with another lady. Eventually they moved her in with me, which made life easier. She's a nice lady. 

I have a new friend! Monique, a french canadian with a lovely accent. She's had bowel cancer and had a large piece of bowel removed and now chemo.

'Dey have removed a turd of my bowel' she said in her french accent. She meant a third of her bowel! That made me snigger too.

We're both on fluid charts so there will be bedpans galore in the bathroom. Some with A written on for her and B for me to coincide with our bed spaces. I hope it don't get messy!

Anyway, i think its bedtime. Ive had so much fun today I'm shattered.

So its goodnight from me, and goodnight from Monique.

23.2.16

Part 2

Kickman line done. It was nothing to worry about. George the radiologist was lovely, he chatted all the way through. The local anaesthetic stung but that was all, and there was a lot of real shoving to get the catheter in, but all done now, and I'm on the ward.
The chemo has started. Ive had saline, mannitol (for kidneys, to encourage more peeing) cytarabine and now etoposide running the same time, and these will run for 4 days. It would be nicer if they had better names. Instead of cytarabine, how about angels footprints, or sweet lily fluff. It would be less stressful than having cytarabine.
I must say i was waiting to start feeling bad and it arrived around 8pm. I felt slightly nauseous and headachey, but i was given something for nausea and that helped. Im still headachey but can cope with that, and theres always some paracetamol if needed.
I got through the night, regardless of being woken at 2am to have my obs (BP pulse temp and O2 saturation) done, and visiting the loo every couple of hours to pee into a paper mache bedpan! Im still headachey, and joy of joys my taste buds have gone. Even water tastes revolting.
Feeling a lot better following 2 of those little life savers, paracetamol, I've showered, tidied up my bed space, done my eye drops, 3 on the cheek, 1 in the eye! Now waiting for the nurse to come and unattach me from my shackles so i can get my top half of clothes on. Bless 'em, the nurses are so busy so I've walked a marathon up and down the ward corridor, 1 for exercise, and 2 so as the nurse may remember me and let me get dressed. I should add, I'm not doing my marathon topless, that would be ridiculous and down right dangerous to some of the weaker patients. I have my animal print dressing gown on, in case i need to sprint. Which is lucky, cos theres just been a crash call (when theres an emergency) and i had to sprint out of the way of a stampeding male nurse.
Thoughts go to the lady concerned.
All back to normal now and i am fully clothed, minus a bra cos of the Kickman Line. Note to self, don't sprint too often without a bra, it could be dangerous.

23.2.16

Its here, its here. Im feeling rather queer!
Its 6.55  and I'm sat in bed with a black coffee and I'm about to make another one cos I'm NBM at 7.15. Always the one to use my time wisely!
I have 2 hours until Lyn comes to collect me to take me to the hospital. What if i didn't answer the door to her? Bugger, she has a key. What if i hide under the bed? She will find me cos of the smell of fear that I'm giving off!
Yes, I'm pooping myself! The chemo is one thing, but the Hickman line (or Kickman line as i like to call it)  is something else. Ive heard some bad stories, but I've heard more ok stories so i should man up! Not forgetting i do have a valium tab i can pop half an hour before.
Actually, I'm fully aware my fear is unfounded. Its the fear of the unknown. Why does our brain do this to us?  I suppose its the fight or flight thing. Adrenaline is pumped round your body to ensure you have the balls to fight off the demon, or run. Maybe i should start running now. All the procedures I've ever had on my cancer journey have been ok so far.  On a scale of 1  - 10, 10 being hideous, and 1 being nothing to worry about, all of them have been below 3. The chemo  certainly had its moments when it hit 6 or 7, but then it may have been higher. I think its like child birth...you tend to forget how awful it was.
Ooh. I have 4 minutes to drink my coffee, but its too hot and i can't be bothered to get up and add some cold water! I'd rather scald my mouth!