11.12.16

I really ought to post a blog to let you know how its all going.
Im doing really well.......really well. Far better than my first lot of chemo. It seemed to take forever to recover from that. This time, the treatment was far worse but I've climbed Mount Recovery and even got a flag at the apex!
Its been 6 months since my last lot of treatment and my transplant.
Ive now finished my 6 month course of antibiotics and anti viral tabs which I'm pleased about cos they were big buggers! Im still taking another antibiotic for another 6 months, but even though they taste disgusting, they're a lot smaller.
Ive watched a line grow up my nails as the months have passed. Its across all finger nails and obviously chemo induced. Don't know about toe nails, i haven't got close enough to check. Its taken 6 months for the line to race to the finishing post and now its passed through the ribbon my nails are chipping and cracking and splitting. Ive taken to wearing gel polish to protect them so I'm looking quite snazzy!
The brows and lashes have returned, in fact they returned very quickly. They only thinned but the brows went very pale in colour. Now, again, almost 6 months to the day, the lashes are dropping like leaves in the fall. I have a few normal ones on the outer top lids, which looks remarkably odd, but lots of new ones starting to grow, so in about 3 or 4 weeks i should look absolutely stunning!!!
The hair!!! Oh my word. Its silver. Im now a silver fox. And its grown back really really curly. Im now looking so much like Tom Jones people are throwing their knickers at me in the street!
Im having my first trim next week. Just the curly bits taken off the back to stop me looking like an old age sheep. So i suppose I'm being sheared.
Im still fat! I have promised to lose a stone by the time i see Dr Jack next time, december 29th! It aint gonna happen. Too many festivities. I shall really have to pull my belt in by the next appointment which should be by the end of march, just as the Easter bunny raises her ugly head.
And I've been trying to give back. During this last lot of treatment i had so many friends offer help. Im very grateful. A friend of mine has been diagnosed with Hodgkins lymphoma, so i have been supporting him. Ive been taking him to chemo which is quite weird. Im not too keen watching them give him infusions into his PICC line, or hearing the IV alarms 'beeping'. It takes me right back to my treatment. But he has very little support so i feel responsible for him. And he's very grateful.
My head hasn't fully recovered. Im still forgetful, or stupid my son says. I still see the funny side of many things tho. Far too many things.
For example, the other day on FB someone called Debbie Dodds posted about a baby owl.
'Aforable' she mistakenly posted.
With all the D's in her name it tickled me that she couldn't insert the d in adorable.
And of course Christmas is imminent. My tree has been up since mid november. Woe betide anyone who makes comment about it being far too early. Last Christmas was pants!
'You have relapsed, its nothing, yes it is something, no you haven't relapsed, yes you have'....the last 'yes' being on Christmas Eve eve (23rd for those not too good at maths). So i have started the celebrations early this year. I have been taken over by a spirit, well not strictly a spirit. Prosecco! And i have recommenced my mince pie tasting.
To date, and i find it hard to believe it will be surpassed,  the nicest mince pie is from..........(drum roll)...........

THE BOAT HOUSE, CHRISTCHURCH.

I am desperate to go back for more, but what with my impending, 'lose weight, Fatty' appointment with Dr Jack, i think i should decline!
Anyway. I wish you all a merry mince pie Christmas and a happy, healthy, New year.

14.9.16

This is a nice excursion for my birthday month, a PET scan.
Nil By Mouth from 2am, thank goodness its an early appointment so i don't have to starve too long.
No metal allowed, so earrings removed, glittery nail varnish removed (my logic says it has metal in it, so it has to go, not that my fingers are being scanned!), no bra! Note to self.......dont trip over them! That would be embarrassing.
So I'm off. Back later.
Very uneventful although i could teach the nurse/practitioner a few tips on patient care!
Then the 'main' week.
Monday - Hospital for bloods.
Tuesday - dentist to have a crown.
Wednesday -  'B' day. A flipping good day. Out for lunch - The Edge, (I don't mean i went out with the fella from U2). overlooking the sea. Then to see Bridget Jones Baby. Then home for coffee and a chat.
Thursday - hospital to see Dr Jack, only i didn't see him. Don't know if he was away or busy elsewhere but i saw another doctor who gave me my results of my scan. All clear. I was expecting this but theres always a little doubt. I think after my recent treatment i would have been devastated as well as surprised to find the lymphoma was still there. The job is to try and stay in remission. Lets hope so this time.
Friday - i went to Chris's house for the weekend for further celebrations.
Chris, Chloe and I went into Bath and went to the Real Italian Pizza Company for lunch. The best pizzas, just like Italian ones. I suppose it would do when you take into consideration the name. Then we had Real Italian Ice Cream. Low calorie of course. Went shopping. Spent money. Wore myself out. It was great.  Chloe and I even went into a shop that sells 'naughty' stuff, and i don't mean Chocolat. The places where batteries aren't included. We had a bit of fun with the over zealous shop worker. I bet she wished she'd never offered her help.
Back to Chris's to help with the piggies, the chooks and quacks, tortoises, cat, dogs and any other waifs and strays. There were a couple of alpacas cutting the lawn a couple of weeks ago!
So my birthday month turned out OK despite all the happenings. I must say the re-addition of Prosecco in my life is quite exhilarating. 5 glasses in one month!
I think i need more practice though!

1.9.16

Hurrah. My birthday month. In the past i would fill september with things to do to celebrate my birth. This year i am celebrating with a possible broken rib. I slipped in the bath. Im not as strong as i think i am at the mo. Its funny cos it was on my mind....'don't slip, be careful', and i slipped. Luckily black is very slimming so the right side of my back and my right arm (or bingo wing as my son calls it) must be looking very slender!
I have the next 3 days of celebration tho. Seeing Rochelle tomorrow. Its her birthday month too. Phil on saturday. And on sunday i was seeing a friend but we've cancelled that for now and as of last night i have been encouraged to go to a singing workshop. Don't know how that will work with a broken rib. Its more about meeting friends for me this time.
The other treat for today was walking the doggies and the need to pick up the poop in the poop bag. I always have terrible trouble opening the bags. They're like black bin bags but smaller. I rub the edge, blow them, stretch them and eventually they open. I seem to have lost my dexterity.
Having succeeded, i place my hand inside and bent down to the offending article.  Grasped and realised there was an error with this bag. Both ends of the bag was open and my hand had gone straight through and collected the poop 'au naturel'!
Lets hope september gets better!

7.8.16

Further more to my post about being bald the other day (it may have been a month ago, I've lost the plot!), i have realised a further issue. I need glasses to read, as most people of my age (27!) do. I used to put them on my head. It kept my hair out of my eyes and i always knew where they were. Now, if i put them on my head for any length of time, i get little dents in my scalp skin. I think its the nose rests/bridge/pads, whatever you call them. And if thats not bad enough, when i wear them to read something, they seem to weld themselves to the skin above my ears. I feel like I'm ripping my skin off when i take them off! Take heed people. This is gods way of telling you to eat more carrots!
Cure.
People in my cancer group keep talking about a cure. Its such a good word isn't it. Cure Cure Cure.
You'll never know till you die! Simple.
So it was my return to the hospital to see the cardiologist following my Echo co co co. I gathered my strength and took a deep breath to get me up the ramp. Got to the midway where you then turn a corner and felt the need to pretend i was looking at the lovely view from the window. In reality i was 'resting'. Trying to get my breath back. I continued the journey to the receptionist who luckily was talking to someone else. More chance to stop puffing like a 50-a-day smoker.
'You're in the wrong place. You need to be down in outpatients.'
Nobody had told me this. I was sent an appointment for my Echo in the cardio respiratory department and i was told my appointment with the cardiologist on the phone. No department was mentioned.
Luckily i still was puffing like a steam train so she was spared my wrath!
Down to the Yellow clinic. I waited. I played a game. I waited. Another game. I asked the HCA who always seems to bustle (but slowly) about looking important.
'Is Dr Carpenters list running late?'
'I don't know, I'm not dealing with Dr Carpenter!'
And he was gone.
No, 'I'll ask at the desk for you.' Or, 'Go and ask at the desk and they can find out for you.' What happened to helping or being polite? One day he will be in a similar situation, maybe in the diabetes clinic going on the size of his waist! I wish i believed in Karma!
Anyway, his clinic was running late so Dr Carpenter directed me to one of his team and told me he would catch up with me after the paperwork and the initial examination had been done.
Ejection Fraction is the measurement that determines how well your heart is pumping out blood. I believe the normal is 55 -75. Mine dropped to 48 after my first lot of chemo. It is now 47. I suppose thats ok in the grand scheme of things. I am very short of breath at the mo, but i believe that to be the chemo and hopefully will improve in time. I need to keep up the pole dancing!
Dr Carpenter seemed happy enough with me. We reminisced about the faux pas he made when he first met me regarding a gown he gave me to wear. We laughed! He said he still feels uneasy when he sees me......just how i like it!
I will be reviewed in a years time. A year to get fit, lose some weight, and grow some hair, maybe dye it a different colour just to confuse him.

5.8.16

Echo day. Im not gonna embarrass myself by writing ECHO Echo echo co co co. That would be silly.
I arrive at my favourite hospital - Poole. Drive straight into a parking spot. I just know all is gonna go well today.
You see, I'm a bit of a tease. You're all thinking its gone badly as my recent hospital visits have gone. You'll have to read on to find out.
The first hurdle. The cardio-respiratory department was well thought out. Patients with heart and chest problems normally have some shortness of breath. So they have placed the department up a 50ft steepish ramp. So by the time you get to the smiley friendly receptionist you're close to a cardiac arrest. At least you're in the right place i suppose.
I am directed to the seating area with all the old people. Im always the youngest there. I don't know if thats something to brag about or not.
Whilst they read Womens Weekly and  Readers Digest, i pull my iPad from my bag and play a game or two. I wonder if i had the app if there were any Pokemons or Pikachus in the area?
Im called in for my Echo (co co co) by a nice bald man. I can see we have plenty in common.
I am asked to get on the couch.........topless. Its an uncomfortable feeling laying there wearing nothing but a skirt. I even removed my hat. I did warn him first tho. Didn't want him having palpitations.
A quick unexpected squirt of cold gel made me feel like id been defibrillated. Im sure i bounced off the couch.
And we're off.
Breath in. Hold it. Breath normally.
Breath in. Breath out a bit. Hold it. Breath normally.
Breath out quickly and forcibly through the nose. A brief description of why was given, but in one ear and out the other. Something to do with blood vessels closing.
Gel removed (by myself i might add) from various parts of the upper body. Dressed. 'Titfer' back in position, and back down the ramp. A lot easier going down than coming up!
See. That wasn't too painful was it!
2 weeks till i see the cardiologist (oh bugger, back up the ramp) and find out if the treatment has done any damage.

3.8.16

Ive just been for an hours dog walk! Get me. I started dog walking about 2 weeks ago and it seems that walking is an acceptable form of exercise for me. I get a bit puffy, but thats expected. The only problem is this........ i can't put socks on. I remember having arthriticky (i do love making these words up) joints after my first lot of chemo a couple of years ago. It went off eventually. I wish i had taken more notice of when it settled down a bit. Well its happened again. Hips being the worst affected joints. Im thinking of selling tickets to watch me putting my socks on, its quite entertaining, although the air gets a bit blue at times. Im trying to train my little dog Loki to become an 'enabling dog'. Ive got as far as training him to pick up the sock. He then runs off with it and i have to start 'potholing' under the table to retrieve it.
I saw Dr Jack a couple weeks ago. He thinks its ok me having all my issues considering how much he poisoned me. Nausea, retching, headaches and the difficulty in opening the mouth has become clear. Also arthritis.
Ok. I hear ya. Shut your mouth. Keep it shut. And don't open it, not even for food.
My appetite has returned, as have my taste buds. I haven't sampled Prosecco yet. Ive not had the calling.
I have dumped the soft toothbrush (needed when the mouth was sore) in favour of my electric one. Some days i feel rough, others not so bad. When i think back to day 10 when i was discharged from hospital..........i'm so much better.
The biggest but not most important problem.......the hair. Or lack of. Im as bald as an eagle. I have a thin covering of 2mm white hair. I have taken to eating a square of jelly a day, known to be good for hair and nails. This is the baldest I've ever been. The first time it just thinned. I had to shave it off cos it looked weird. And during the salvage chemo which started in february this year it thinned again. It had started to grow back, and quite thick, but the BEAM chemo cleaned me out completely.
I have been out a few times. Coffee here and there, but without the coffee. Usually black tea or hot chocolate, but even that isn't enjoyed at the mo. Cakes aren't, i repeat, aren't, on the agenda yet. Im not interested.  Something seriously wrong there!
And so sad.......the weight hasn't dropped off me as i hoped it would. Ive lost some, but nowhere near enough, despite the small portions i'm having at meal times. And my tummy is so swollen. I presume from the mucositis (inflammation of the digestive tract).
The sun has been shining a fair bit. I don't like it! It makes me hot and sweaty. If i have any head gear on, my head turns into a water feature.  I am not allowed to sit in the sun forever and ever and ever again! Although the shade is ok. Sun cream is advised, which also makes me feel clammy and uncomfortable. So although i watch all the TV programmes of house hunting in France, Spain and other mildly exotic places, it aint gonna happen! Leave me be in damp Dorset. And the wet weather doesnt affect me whilst i am bald. No bad hair day here.

11.7.16

Over 2 weeks since my last blog. You could quite rightly accuse me of being negligent.
So why not, i hear you shout!
Ive been busy. Out and about. Having a fab time. Coffee and cakes. Prosecco. Lovely walks along the beach........if only.
I have done nothing of note. My main mission in life at the mo is to recover from the treatment. Its even slower than i thought. Maybe I'm trying to run before i can walk, after all, it took me a good year to get over the last lot of chemo, and this recent stuff was a real humdinger.
I have attempted to go out. Ive been to tesco express, and the vets, twice, and the pharmacy. I must say how boring it is being home all day watching tv and playing on my laptop.
So what can i tell you?
Im day 34 today.
I received a lovely appointment from Sammie, the nurse specialist. I thought she was nice......now I'm not so sure. An appointment for a bone marrow biopsy!!! And on my birthday!!! Thats apparently day 100 +1. Its to check my bone marrow, and for statistics! Sod that!
I have spoken to Clare, the nice nurse specialist (i don't mean that Sammie!) this morning and she has talked through a few things with me. If i talk to Dr Jack he may let me off the biopsy. I think with my brand of charm, he may. But the silver lining is, if i do have it, i can have some Midazolam (a sedative) to knock me out. And i do love Midazolam. Its like being on holiday, laying on a sunbed, in the warmth with the waves lapping on the shore. It does mean a cannula, but thats nothing compared to a bone marrow biopsy whilst you're conscious.
Other than that, i asked her why i still have nausea, retching weekly (how flipping odd!), headaches, indigestion to die for, problems with opening my mouth, and other stuff,  etc.  She thinks I'm just taking a while to recover, its unusual to still be like this, but it has been known. I just need to settle down! Does anyone have a magic wand?
My worry is, all the fun things i have booked into my diary. Im hoping i will be able to enjoy them as they  arrive on my social calendar. As long as i carry a bucket, tissues, meds, an oxygen tank (exaggeration used in excess there), a blow up bed, digestives (for anti sickness), a fireman (i think this is a necessity), ice cold water, and spaghetti hoops, i'll be fine.

24.6.16

My time at home has been filled with happiness but also symptoms that i thought had gone. Sadly they have returned. Its only normal. What did i expect after that awful week of chemo? Still onwards and upwards.
My lovely friends have rallied round. Ive had visitors galore. Gifts, mainly food, which is always nice.
Food has been a problem. My mouth doesnt open to its full capacity at the moment. I know that will shock some of you! And there is only certain things i can eat, and keep! Mostly soups. I do have a few portions of cottage pie in my freezer. That has hit the spot on 4 occasions so far, and i still have 4 more to look forward to. Im not too keen on sweet stuff. Although a rhubarb crumble has gone down a treat with some custard.
Drinking has been the biggest problem. I can't drink water. Absolutely can't do it. Tea and coffee have also left the building. Hot chocolate, half a cup at a push. And my recent liquid 'amuse bouche' is honey and lemon. I can't taste it as normal so I'm sure if anyone else tasted it they would probably suck their cheeks in at the sharpness of it.
It is all getting better slowly tho.
Well let me tell you about yesterday. All my troubles seemed so far away.....
Kickman line removal day.
I had a long wait until doctor Matt came to prep the area (anaesthetise it) ready for Dr Jack to come and pull my line. He normally pulls my leg!
Dr Fenella arrived and grabbed hold and pulled. And pulled. And pulled and pulled. But it was going nowhere. She warned me if a little bit breaks off it could go into my circulatory system and i would have to go to X-ray or ultrasound for them to find it, maybe from the femoral area. It can't stay in there.
She pulled again, and it snapped off.
She grabbed hold of the end (under the skin) so it couldn't be sucked in and Dr Jack was summoned urgently.
The cavalry.
NOW they anaesthetised me. Dr Matt had intended doing it but was told it wasn't needed!
Dr Jack tried to get hold of the end under the skin. It had shredded somewhat.
He decided to try the centre hoping to pull one end through and then the other end through. More anaesthetic.
It seemed my body had adhered itself all the way along the line from top to bottom so no amount of pulling was gonna shift it.
Blood spurted in my face. I was tugged at.  More anaesthetic. Different cut through packs. Scalpels. Forceps (hanging on the part of my line so it didn't disappear). It was not nice. Slits along my chest. Sutures needed, for removal in 7 days. Extra anti biotics.
Then hurrah, the top part of the line came free after slicing up the sides. It wasn't too much longer before the bottom half came out.
And all the way through it Dr Jack entertained me with his smart ass remarks and humour. As usual, he was lovely, as was Matt and Fenella.
At one stage i remember commenting on my scars and Dr Jack replied, 'i like a woman with scars.' I absolutely roared with laughter which was dodgy cos i was trying to keep still.
So stitched up like a kipper i was able to escape.
All in all, a really stressful procedure was lightened by humour.

18.6.16

Im home!
Don't worry, you havn't mislaid  a blog somewhere. I was told a couple of days ago that i could go home if my bloods recovered. Thursday my neutrophils were 0.4 and friday they were 2.3. That is epic. So i was so excited about going home, making plans, talking to people to arrange things, that i had no time to blog. So its all in this one.
So it was a question of whipping through observations, blood tests, IV antibiotics, drugs, trying to eat and drink, trying not to go to the loo, etc etc etc. And i did all that, and now I'm home.
So Jane collected me about midday. She's a twinkle. Dropped everything on her day off to ferry me and all my stuff around. We, and when i say we, i mean she,  got all my stuff in the car, i think i thought i was there for a month...... oh yes i was supposed to be there for a month!
Once in the car i had a cry. No reason, i just felt i should. It wasn't a crying cry, it was a laughing, excited, amazed cry and Jane kept laughing at me. It was elation! I was going home.
For so long now I've lived under the black cloud of a stem cell transplant, now i was going home. No better feeling in the world for me.
We got home and Jane unpacked. Jane made me some soup. Jane took stuff upstairs for me. Jane was a star. After a cuppa and a chat she left so i could have a well earned snooze. Doing nothing is very tiring.
Then Den arrived with a lovely bunch of flowers and a big smile.
She made me a cuppa and then we sat and gassed for a couple of hours. It was lovely. Then she left me for another snooze again.
Then Sam arrived home with the shopping. We sat and gassed for a bit and then it was time for bed.
My own bed.
Spider removed from hanging from the ceiling at the end of the bed, lights off, pillows arranged.....and sleep.
Night terror!
How rude. Ive not had one of them since before i went in for my treatment. Half an hour after falling asleep, as usual. They're very manageable now tho, not so much a night terror as a night irritation these days.
But nothing can dampen my spirits at the moment.
So I've woken this morning after a lovely long sleep, no interruptions. Ive been downstairs and made a cuppa tea, sorted my meds, washing up (i forgot the tap was running and it overflowed!), put my washing on, folded up Sams washing, and back in bed with my tea and a bowl of cornflakes. I forgot i wasn't 'normal'. The cornflakes didn't work, but the tea did.
And how did i manage to do the things i did downstairs? Im supposed to be helpless, weak and feeble, needing lots of rest. Otherwise i'll just crash and sleepzzzzzzzzzzzzzzzzzzzzzzzzzzzzzz

13.6.16

Ive not been up to blogging for a few days so now i have the task of 'catch up'.
Ive felt flipping rough. I never knew being neutropenic was so bad. Let me try and list a few symptoms.
My mouth is hideous. Mucositis to the nth degree. A white and brown tongue. I can barely open my mouth its so tender. Theres a constant awful taste which makes me feel nauseous. And theres an abundance of thick saliva - sorry if you're eating your brekky!
My oesophagus. Also severely mucositis-ed. If i swallow it feels like a bolder is blocking the passage. Needless to say i am not eating or drinking. I have attempted a few spaghetti hoops and they are able to slip down, unlike water, which causes no end of distress for me.
My tummy, also mucositis, is causing its own problems. I won't go into details.
I have fungal areas all over. Itchy, prickly areas.
My hands are so shaky and I'm so weak. When i go for a shower each morning I'm shattered afterwards, and just lay on the bed for the rest of the day.
My head feels like its been kicked in.
Anxiety. I have nothing to think about but my health so every thing done to me is hyper.  I worry about air bubbles in the giving set (you need 16mls of air for it to kill! Don't know who they tested that on!). I worry every time i have a drip. I watch it drip and it makes me nauseous. I feel nauseous when i say the name of the chemo drugs I've had! I worry when they inject a drug into my hickman. I feel i will react to everything. The saline can be a little cold and that makes me cringe.  When they take blood. When they give me jabs in the tummy. When they give me my tabs. When i lay down, when i get up again. This is all psychological. Strangely i no longer have night terrors! I suppose theres only so much stress/anxiety a body can have.
Tablets. I have buckets full, slightly exaggerated, but there might as well be buckets full for all the trouble they cause me. How do you swallow a tablet, and some are big buggers, when you can't swallow and you can't drink.
Nausea. Ive had constant mild nausea, which peaks on a few occasions into  'I'm gonna throw up' mode. This was the bit i was dreading, but i seem to have mastered it. I don't bother with the anti sickness tabs cos they have an effect on the rest of my body. Some make me shake and shiver, but make me drowsy. Another makes me so drowsy i can't keep my eyes open. And i still vomit. So whats the point of taking them. Ive always been one to take as little medication as i can. So it seems twice a day, usually when i try and rinse my mouth out, i retch and retch to the point my tummy muscles have braided themselves.
Observations every 4 hours. These are the latest readings. Pulse 120, BP 70/48, Temp 37.4. O2 normal!
When the pulse is up they're not happy with me. When the BP is down they're not happy with me, and they take it again and again. 'Try another machine', 'Try another arm'. And its always low.
'Drink more they say'. 'I can't cos i'll be sick'.
So then they start an intravenous infusion for a few hours to top up my fluids.
When my temp is up.....well thats a different story.
This means i have an infection. Not a good place to be when you have no neutrophils at all to fight it off. All hands on deck. Blood cultures taken. Loads of blood from each lumen of my hickman and also from a vein in my arm. All in the off chance they grow something and they can find out where the infections is. Normally a  50/50 chance they find that. Strong IV antibiotics started and every 6 hours. These have a wonderful effect on a body!!!! Lets just say i get plenty of exercise!
And because I'm in isolation i have to ask for everything that i need. I hate that and feel so guilty. They're all so busy, and so many times it gets forgotten and then asking again i feel worse. Luckily they are all lovely here. I was lucky to be put on the best ward.
Transfusion after transfusion. £200 a bag, and thats not including the giving sets and flushes etc. Ive had 5 now!
And now........my hair is starting to go again! Luckily its only about a centimetre long.  Its gonna get chilly.
And the thing that makes me smile is seeing Dr Jack. He always reassures me. He tells me I'm doing well, but with a bit of flirting, teasing and humour. He told me today I'm made of steel girders! I think that means I'm doing well.

9.6.16

Today i received the news I've been waiting for. Im neutropenic. That means i have no neutrophils, nothing to fight off any infections. This is the time i will start to feel rough but its the means to an end. I am now waiting for my bloods to recover so i can go home!  That won't be in the next week unfortunately. This is also the time i am put in isolation. No mixing with germs for me thank you very much. Apparently it is inevitable i will get an infection and they have to act quickly to get it under control. I have my wee tested every day, bloods daily, my temp, pulse, BP and O2 saturation rate every 4 hours in the hope they catch anything sooner rather than later. So this doesnt really sound like good news, but it is.  It means they've achieved what they set out to do, kill my bone marrow, in the hope of killing off any cancer in my body. The other good thing.... my platelets have dropped so much i don't have to have the heparin jabs (used to thin the bloods so as not to form clots) anymore. I flipping hate them jabs. They are painful for such a tiny needle and they turn my tummy into a colour swatch of blues, purples and greens.
However....
Maddy, one of the nurses, has just come into 'stalag 13' and informed me I've been written up for GCSF jabs!
Do you remember these from past blogs of mine? The ones i had 3 of every night to count my stem cells and then again before the harvest. Luckily its only 1 a day, and hopefully it won't be for too long if my bloods start to recover, and that jab should help with that, which should get me home quicker hopefully.
Theres a lot of use of the word hopefully here today!
Ive also been given some Nystatin Suspension to swirl round my mouth and swallow. It smells of almonds, which i love, but cos I'm Mrs Queasy from Queasyville at the mo, I'm a bit wary of trying it.
My mouth is a problem but I'm sure you've heard that before. Its that old devil called mucositis. Inflammation of the mucous membrane from the mouth down to the derriere. Causes no end of trouble. Pain, difficulty in swallowing, indigestion (big problem), nausea and of course the old deli belly.
Anyway, lets see what happens next.

7.6.15

Happy re-birthday to me.
Todays the day. Technically its not my re-birthday yet as I've not received my little life savers yet, but they are in da house!
Lets go back to this morning. I have spent all morning trying to catch up on missed sleep. It makes me very crotchety if i don't get my sleep.
I would like to thank the bright spark who ordered in metal pedal bins. All I've heard all morning is 'bang, bang, bang'. People knocking on the door. Trolleys up and down the corridor which i know can't be helped. But those bins.........
So im in stroppy ish mood. My mind wandered towards food. What delicacy have i ordered today? A light bulb moment. As I've been disconnected from the drip until my cells are ready, i decided to take a visit to Costa. I may be neutropenic soon and i won't be able to leave my room for 3 weeks.
So off i trot, huffing and puffing all the way. Did i say, I'm very very anaemic. My Hb is 81 and it should be 120 ish. Thats why i was so puffy, as well as the chemo.  I stood in front of the sandwiches trying to find the sausage and balsamic onion toastie. Took me a while but there it was. I was elated. Took it to the counter for toasting. £3.90, but i don't care. I throw caution to the wind when skipping hospital food.
And then there was the lovely Linzi who also recognised my head from behind (Dr Jack said that to me when i had an appointment with him 2 weeks ago!). She was armed with pineapple for the benefit of my poorly mouth. Not too bad at the mo, hoping the darned ice pops did the trick.
So here is a pic of my wonderful lunch.

And yes, it did cause happiness. And the fingers of pineapple did too.
So here i sit feeling satisfied, knowing my cells are ready and waiting. Not sure how long it will take, how many bags i will get, how it will affect me, but its another step forward.
So here goes.

So this is the container used to transport the cells, full of dry ice.

                                         And this is what happens when the lid is removed.

The bag of cells are frozen solid and have to be held with special gloves.

                                                    Paul and Sammie doing the admin.

                                                 The cells are placed in a boiler to defrost.

And here they are. They have to be used within 15 minutes or they turn toxic. The amount of cells needed is 200000000 (200 million). If you recall, i was superwoman and made absolutely loads of the beggars. In this bag alone there is 450000000 (450 million), and i have 2 more bags frozen with the same amount. I believe i signed a form to say they could be used for research if theres any left that i don't need. I think i should reimbursed for all my efforts!

So thats me done. Ive been grafted. Now time for the cells to do their thing and make me better again.  The sooner the better!

6.6.16

Done it!!!! Im so happy i could do a dance, but it would make me too dizzy!
Ive finished chemo.
I started with a diuretic (to make me wee loads to flush the drug out!), hydrocortisone which helps with nausea, recovery and other things but i can't think what at the mo, and anti emetic, also for nausea. All through my Kickman, so no needles.
I did a little twerking during the IV hydrocortisone. It gives you a sensation of prickly ants running round your undergarments! Really, it does. So i twerked, much to Paul, the charge nurses distress!
Ice pops.  I had 10 of the little lovers.

And heres me enjoying my favourite, a red one. 

I flipping hate them now.

And then as i lay there recovering  about 3 hours later, i see someone in the corridor that i thought i recognised. I managed to get out of bed and walk the corridor to find a lady who used to teach me belly dancing. Now no laughing, i know i have a belly to die for at the mo, but i was a fair bit trimmer in those days. Her hubby also has HL and he's relapsed too. We've had the same treatment and he has his SCT the end of this month. 

It was so lovely to see her, and him. But what a blast from the past. She hasn't changed a bit, I'm sure she's not saying the same thing about me!

Sadly my dancing mood didn't stay for too long. The steroids stopped me sleeping. I was up from 12mn till 2am chatting with the nurses on duty. Even then i couldn't sleep for at least an hour. I spent that time thinking of what I'm gonna do when I'm let out of hospital and I've recovered. The world will be my oyster. The only trouble is, I've forgotten what i decided. 

4.6.16

Day -3. My son Chris's 30th birthday and I'm not there to share it with him. This could be the first birthday I've not been with him. Feel like i have a limb missing! His reply would be, 'its not brain damage though, is it?'
I look forward to the time i can celebrate with him. It may not be his actual birthday, but it will be special to me especially cos he says he's taking me on a spa day with Chloe at Centre Parcs Aqua Sana.
Other than that, Sam visited me and brought me a quarter pounder meal from McD's. Then Linzi arrived bearing gifts, 3 x scratch cards and some little candles in china animals, so sweet.
After they departed i went for a wander upstairs on the ground floor and i spied a Costas. I dashed (whatever!) back to my room to get my purse and headed back there to see if there was something nice to eat for tea. When i got back to Costas i was informed it wasn't open till monday! Bummer.
 Back to the ward and dinner was served. Sweet and sour veggies with rice. Oh good golly Miss Molly, it was amazing, but i was still stuffed from the burger! Tomorrow is another day.
I was lucky enough to be pointed in the direction of the veggie menu by Glenn on the ward. What a fab idea. The food is so much better, although no meat obviously.
Day -2.  Woke up feeling tired and jaded, and itchy. Im wondering if Beryl has something contagious as she's been complaining of an itch for days. She's been complaining of a few other things too. Sunday morning is special when you're woken up by a few bowel sounds! A treat for the ears and the nose! Oh god, move me into my single room quickly!
I am now covered all over in a red spotty rash, very becoming. At least if i get bored i can do a dot to dot.
On the plus side, i enjoyed a vegetable curry and rice, and the 'small' portion was enough for me and my visitor! Im sticking with the veggie menu from now on. Result!
So my penultimate chemo tonight, and mango flan tomorrow. Dr Jack assures me its nowhere near as bad as the first day! But then he also told me i have scabies! He's such a card!
Sadly the ward have just run out of hot chocolate......thank goodness Costa opens tomorrow!
In my excitement, i have fashioned some slippers out of bed pans.  A little uncomfortable, but beggars can't be choosers. I wonder what the dress code is in Costa's. Is paper mache foot attire acceptable?

Day -1. Still itching like mad this morning. HCA has arrived with her bucket load of perfume on which normally i hate, it makes me feel sick, but today she has come in mighty handy. Feral Beryl has 'performed' after 6 days. Wafting the HCAs perfumed body round our bedroom has cleared the aroma! I must say Beryl is very sweet. She entertains me during the day with her funny little quips. But this side of her is unacceptable!
Anyway, fluids to be erected at 10 for 'Mango Flan' at 11. Any of you that tune in regularly to my blog will know mango flan is the final chemo drug, Melphalan. Ice pops starting at 10.40. Luckily its a sunny day to enjoy ice pops. I am, however, feeling slightly anxious.
My mouth also is starting to 'go'. Its feeling a bit numb and the mucous membrane feels thick, as if its about to drop off. Oh joy! But every second is a second nearer to going home.......and repeat.

1.6.16

Its June already, and possibly the most challenging month of the year for me. I am waiting for a phone call to tell me what time to be in hospital to start my last (hopefully) cycle of chemo. The worst cycle I've ever had. I wonder how i'll cope with it? Will i breeze through it? Or will i struggle this time? Time will tell. I'll let you know how it goes. Now I'm gonna enjoy a decaf coffee and some scrambled eggs. Catch you later.
Its not a good start! Ive just put all my tabs in my little pink dosset box only to tip them over and mix them all up. Im guessing which ones are which, fingers crossed! Then i got back upstairs with my coffee only to realise id left my hot water bottle downstairs (feel a bit chilly today, maybe anxiety induced?), and now my laptop is about to die and my charger is downstairs! They say things happen in threes!
Just to explain, instead of day 1, day 2, etc, the days are -6, -5, heading for the transplant that will be Day 0. Forewarned is forearmed!
Day -6. Well I've arrived! Ive been put in a room with a dear little lady with dementia. She's constantly laughing and chatting with herself. She keeps asking where her biscuit has gone. And now her ear seems to have dropped off and she can't find it, and nobody seems to be doing anything to help! She's just shouted, 'oh shoot'. She's a dear little thing but i would rather be somewhere with a little bit of peace and quiet. Hoping to be moved to another room later.
Not seen anyone yet except for one HCA who came in and weighed me......you have to get your priorities right don't you?
Well I've had the first lot. The karma sutra drug. Wow. That was horrid. The first 45 minutes were ok but suddenly my nose blocked up, my eyes were stinging and my throat was throbbing. Almost like that feeling when you eat a really hot chilli. It was so uncomfortable, almost unbearable. Its going off now the drugs finished. Thank god i only have that once.
So this is me before karma sutra.....

and this is me after 45 minutes.

Face all red and swollen. I have been likened to a swan vesta! Luckily its gone off now and normality is restored! Its amazing what these drugs can do. 

And I've found out the drug is a derivative of mustard gas! That explains a lot. 

Day -5. Feeling ok. Waiting for 2 infusions in the morning and another 2 in the afternoon. It turns out i had the first lot at 11am so the second lot can't be till 11 tonight! Hopefully ill sleep through it. Cant say I'm feeling wonderful after the first lot, and feeling very tired. 

Day -4. Same old, same old. Theres a few bright things on the horizon today. Paul, the charge nurse, is on duty today and theres a bit of banter between us.  A visit from the lovely Dr Jack, although his phone kept going off and he had to keep leaving me. So rude! The nurse said he's on call but I'm sure its another woman! He didn't have much to say other than to liken me to a squirrel today as i was all curled up on my bed whilst having chemo. He's gonna visit me over the weekend apparently. Hope he brings flowers! And then one of the chief executives came onto the ward to see how things are going so she came for a chat with me. I was asking how much all this treatment has cost. From last november and the PET scan, through an op to remove the gland, to a biopsy under ultrasound, to eventually having chemo x 2 admissions, all the stem cell growth stimulating jabs and district nurse visits, stem cell harvest, CT and radiotherapy, and now more chemo and stem cell transplant. And theres ongoing hospital visits and treatment. They will try and find out a rough idea but won't be able to tell me the whole cost. We are so lucky with the NHS. I never realised as much as i do now how lucky. 

28.5.16

My last few days before I'm incarcerated!
Today i have been to Castle Point to get a few last minute items i may need for my 'stay'. Athletes foot cream, a new problem for me. You'd think 'they' would realise i have enough to contend with with Lymphoma without adding a foot issue. A couple of t shirts. Some M&S food as a treat before the taste buds just up and leave.  I was gonna get a new nightie and undies but why get them just for a hospital stay.
Then on my return, i flaked out on the sofa in front of Escape to the Country. Thats wishful thinking!
Then i decided to 'do something'. When i come home i won't be up to doing much so what needs doing?
The summerhouse. Last time i went in there, with Rachel, i noticed lots of cobwebs and debris on the floor.
I have just blitzed it. Now don't take that too literally. I blitzed it as much as i was able. Sweat was dripping down the back of my freshly sprouting head. Unfortunately a few spiders were sucked up the hoover, i apologise. Only daddy long legs type spiders, in case Rachel is reading this. She's an arachnophobe. Cushions have been plumped. Surfaces wiped. A perfect little hideaway for when I'm let back into the community!
So going back to my last paragraph.....yes i have hair. Its about a cm long all over. Such a shame its gonna fall out again in the next week. And heres a photo of me. Lets see what i look like each week while I'm in hospital.

Sunday. Out for lunch with a friend, then he took me to The Range to buy a gazebo so i can recline under it when I'm released. Then round to Lyns for a BBQ. Sadly we had just had a roast dinner at The Kings Arms so a BBQ with no food, that would be greedy. Then back home for a coffee before he went off with a key so he can let himself in and erect my gazebo when its delivered.
All i gotta do is leave hospital and my gazebo will be up and running!
Monday.  Met up with Miss Linzi for a caesar salad and a chat. Then home to try and imagine what I'm gonna need over the next few weeks. Ive been given a few pointers for my admission from a fellow sufferer. He's a step further on from me having just gone through an allogeneic transplant where he received his sisters stem cells. He's on the road to recovery (7 months on) but still has issues. My respect for him and his journey is immense.  He has just told me the story of a man who has just raised £100k for Anthony Nolan. He has a rare form of Lymphoma that isn't usually treatable but he's just endured an auto and allo transplant almost back to back. Im lost for words. Is there a word bigger than respect?
Tuesday. Visited Julie for a slice of her wonderful lemon drizzle cake, and for a chat. I was explaining my next bout of treatment and mentioned how i had to have ice chips on the 6th day with the 'mango flan' drug. There was a look of confusion. She only thought i meant ice chips of the McCain variety! Now she may be tip top when it comes to grammar and spelling,  in fact downright critical of others mistakes,  but physics and the solid state of water is defiantly (definitely spelt/spelled wrong for her benefit, another of her pet hates) not her thing. She obviously never watched Titanic!
And tomorrow is Wednesday.
I will try and remember something my fellow sufferer Andy told me.
EACH SECOND THAT PASSES IS A SECOND CLOSER TO GOING HOME.
See you tomorrow where attempts will be made to save my life!

27.5.16

Ive remembered a few other things.  Haha chemo brain isn't gonna beat me!!!
Food. I can't eat anything thats not been cooked or peeled. No berries, no salad, no yoghurts, no soft cheese or soft boiled eggs, no shell fish.  Not too much of a problem cos i probably won't be able to taste anything anyway! My taste buds will go again. Maybe thats why they don't seem concerned that the hospital food is so dire. Most patients don't have taste buds that work!
I remember last time i was in, Dr Jack came to see me and i had discarded my meal. I think it was some sort of hotpot and peas.  Dr Jack commented, and it so tickled me.
'.....and they're not petit pois!'
NHS food and petit pois don't really go together, do they?
Ive been told to wear condoms! I did point out i didn't have a willy....!
Driving. After discharge, drive round the block to check I feel 'sharp'.  I will issue a statement when this is about to happen so you can all go indoors.
Of course i'll be having regular checkups and bloods. I think initially it will be weekly.  Id better ensure I'm sharp with my driving pretty quickly!
My Kickman line will still be in if my platelets are low, i may need a transfusion at a later date, otherwise it will be whipped out before i go home. Oh how wonderful, a proper bath where i can immerse completely like a hippo.....in more ways than one!
No holidays for 12 months,  but if i absolutely must, only to Europe. Im not allowed any holiday vaccinations.
Irradiated blood for life if i ever need a transfusion. This will ensure i don't get Transfusion Associated Graft v Host disease (TA-GvHD). This is a rare but serious complication for people whose immunity is compromised, lymphoma sufferers. The blood is treated with X Rays which removes all white cells prior to use.
My skin is likely to be dry, so plenty of moisturiser and Prosecco. I added the last one cos i feel it an absolute must for keeping moist!
And the last one.
Im expected to lose weight cos i won't be up to eating too much (i hope I'm not the exception to the rule). But if i lose 10% of my body weight whilst I'm in hospital they will want to pass a naso gastric tube on me in case my body goes into starvation mode. That'll be a first.  But have no fear, I'm sure i won't lose more than 10%, and if anyone comes near me with an NG tube, i will stuff as much food down my sore throat as i can.
Sore throat. Thats funny. More like raw throat.
My lovely district nurse, Tracy,  was  here today, possibly for the last time. Wow. It feels good saying the last time. Fingers crossed.
And i must say the nurse who came last week, Linda, said i was a 'Ray of Sunshine'. Maybe she means, I'm a star, hot, shiny and illuminating, but more than likely, radioactive,  giving off gas, and in the shape of a ball!

24.5.16

'I'd know the back of that head anywhere!'
What a greeting. Dr Jack always manages to make me smile!
This was my consent process appointment. You have to sign a consent form to have poison pumped into you. Oh yeah, its all above board! No slamming in a bit of desmethyl-epipodophyllotoxin whenever the mood takes them. I have to give consent.
Incidentally, desmethyl-epipodophyllotoxin is an ingredient used to make Etoposide (or my new name for it, Top of the Morning, said with an Irish accent).
So back to my appointment.
An appointment with Fergus is always an appointment full of fun, laughter, information and reassurance.
I mentioned my hair had started to grow back and of course i would be losing it all again with the next lot of intensive chemo. He replied, 'Yes, i dont want your hair to be longer than mine.'
I must say, i do model myself on him, hair style wise. I wonder if his bikini line is as sparse as mine?
We had our usual little game with a pen. Its his pen. He gives it to me to sign the consent form. He then needs to sign it too so i  offer to 'lend' him my pen. That one's always funny, it makes me laugh every time.
We discussed dongles and internet providers so i have some entertainment whilst I'm in hospital for 4 weeks. Apparently the monotony is the worst thing! Im not so sure its the worst thing!!! And we've moved a step closer - he showed me his own dongle! He even took the back off and displayed his battery to me. It was a revelation!
So much was discussed, I've forgotten most of it.
The positive - I should lose weight due to nausea, vomiting and loss of appetite.
The effect chemo will have. The first day should be not so good. A day of nausea and vomiting, but the next four days, not so bad. I may even be able to go out for a walk. I don't even do that now, so how I'm gonna have the energy to do it when I'm an inpatient, i really don't know.  Ive been advised to 'keep active'. It really helps in the recovery.
Did i mention i should lose weight?
I have a 60% chance of a cure. I had a lecture on HL which was very informative. Ive forgotten it all now, but it was very informative.
Afterwards, I will be on 2 different lots of antibiotics for 12 months,  Pen V and Septrin, and anti viral drugs for 12 months.
I will be very sore from the mouth down to the bum! Looking forward to that. I may not want to stray too far from the loo, if you get my drift.
All bodily fluids are tested regularly for infection. Any sign of anything untoward and I'm pumped with antibiotics and checked regularly to see they are working.
I will more than likely need various transfusions of different blood cells. Platelets, and possibly red ones. Its a shame theres no black cells. I find black to be so much more slimming.
Oh yes, i should lose weight.
He told me the morbidity rate was 2.4%. A low percentage of me dying, thats always good news. But he did say if i died, he'd be very sad! I wonder if he uses these chat up lines on all his stem cell transplant victims.
I need ice pops on the last day of chemo. Half hour before, during and half hour after. Chemo kills the fast growing cells in the body, cancer cells, hair follicles, skin, and gastrointestinal tract. Hence hair loss, rashes and 'the runs'. This is why chemo patients get ulcerated mouths and in bad cases oesophagus and further down. So as to lessen this symptom when having the Mango Flan chemo (Melphalan, day 6), ice will constrict the capillaries and stop the chemo getting to that part of the body.  Apparently, without ice pops (Dr Jack says i have to have 20 of them. Ive told him i can exceed that with my hands tied behind my back, AND the use of Ben and Jerrys would be desirable but I don't think the NHS can afford that!) there would be a need for a morphine pump. With the ice pops its not needed! We shall see, won't we?
I won't be up to much when i get home. I won't feel ill but i will be exhausted. I won't be able to do any cooking, cleaning, but i can have visitors.
And i may lose weight.
Oh the other positive - it may cure me!
A year after treatment ends i have to have all the vaccinations i had when i was at school. I wonder if i have to wear school uniform and have acne?
On a negative note, i must say there are times when going through this treatment i have gone to a dark place. You can't help but think things. Is it gonna work? Will i be told they can do no more for me (like I've seen for other lymphoma sufferers)? How would i feel being told that its the end? Everyone with cancer, I'm sure, goes there at some stage.  Its a scary place. Its not somewhere i go often, and i leave that place with a 'what will be, will be'.
However, my appointment today has been a reassurance (not a guarantee) and will prohibit my entry to that particular nightmare.
Oh talking of nightmares........... Im still having regular night terrors, although they are more of a night irritation than terror. I deal with them well and they have become a bit of fun when i see what my head is capable of thinking at times. A couple of nights ago, i vaguely remember waking up (funny how you have to try really hard to remember dreams and nightmares, when they were very real at the time) and telling myself i hadn't done something important. I remember deciding to write down what I'm supposed to do in reality so that i could reinforce this in the night when i wake up with confusion. D'ya get me?
The next morning i read my instructions......

Morning - 3 tabs
Night - if uterus drops out

Where did that come from? I don't know what I'm supposed to do if my uterus does drop out. But I suppose i should see if i can buy one to pop back in following my hysterectomy 7 years ago!

19.5.16

Having read a blog of a fellow lymph-homie, i felt the need to pull my finger out and write something. He hadn't written his blog for a while after his allogeneic stem cell transplant (using a donors cells, his sisters to be precise, rather than your own) as there was nothing to report. A check up, including PET scan showed enlarged glands!!!! Every lymphoma sufferers nightmare. Then begins the anxiety of bloods and the wait for results. Luckily his was a false alarm, but the nightmare of 'what if' is hair raising (if you still have some), blood curdling (literally), spine chilling and nerve racking.
So what about me then....
I have been waiting patiently for my date to go in for my autologous stem cell transplant (using my own cells). Its a feeling of impending doom, but equally its a life saver and its something that needs to be done, the sooner the better so i can start to recover, and so i don't have it hanging over my head like a deadly night shade type of mistletoe, waiting to administer the kiss of death!
I had a telephone call from Sammy the nurse specialist. I say a call, it was a voicemail cos i was out living it up at Lyns house with a cup of tea and a Belgian bun!
'Yes ill stop for another cuppa' i said, only to miss the call I've been waiting for for over 2 weeks or more.
The next morning i rang, 8.30, 9, 9.30 and eventually she got back to me at 10.
'You're next admission is on June 1st.'
Well i was expecting 23rd May.
'We hadn't factored in the rest you needed after radiotherapy,' she said.
I told her the radiographer had told me i needed 2 weeks off and that ends on the 23rd.
'Yeah, i can't get you in till june 1st!'
So nothing to do with the rest I needed.
It would have been so much better if she'd just said, 'thats the first date we can get you in,' I would have accepted it.
So, June 1st is B day. The first drug of my lifesaving cocktail BEAM. Usually its the initials of the drugs, the B is the initial for BicNU, the trade name. Its friends know it by the name Carmustine. As i did before, i would like to give my drugs a nicer name.
Carmustine will now be know as Karma Sutra!
Etoposide as Top of the morning, said with an Irish accent.
Cytarabine (AraC) as Itty bitty cat in a bin (Chris said to call it Sit on my Face!)
And Melphalan (the evilest drug that ever walked this earth) as Mango Flan.
Good. Thats that sorted then!

5.5.16

Today is review day for radiotherapy. A bit late if they need to change anything - ill only have 2 to go after today.
I presume its more about how I'm  doing? Who knows? I have a few questions of my own to ask. Poor fella won't know what hit him!
Yesterday i erected my mini greenhouse. Very pleased with myself, although it was an easy job, only made hard by my inability to perform. I huffed and puffed. My hat was on and off. I sweated in the warm weather. I feel i conquered Chemo Brain. Notice the capitals. Respect where respect's due! Anything that can turn ones brain into a walnut deserves respect.  I was able to sort out which bits were for which part. I now have a greenhouse. I now need to 'go shopping' for grow bags, tomato plants, lettuce seeds etc. I need to build up a bit more energy for that! And I'm hoping when I'm in hospital for 4 weeks, Sam will water them for me!!
I have proof my brain is not the size of a walnut!
During my review today i asked so many questions that he had to open up my file and look at my  past PET scans.

Look at the size of that brain!

The one on the right was done before my first lot of treatment. The left was done last november whilst they were trying to diagnose me...again. I haven't had another one done since, but i did have a CT scan prior to radiotherapy. It showed that the chemo hadn't removed it all unfortunately, but hopefully the radiotherapy has finished the job. And if all else fails, the next lot of chemo will blast anything left into space!

My next scan will be 3 months after my transplant. Looking forward to that!

30.4.16

The weekend again. Im so tired i don't know what to do with myself.
Why?
I went out last night. Had a whale of a time. I tried not to eat too much cos i still feel bloated in the evenings. So i had a burger without the bun, just the salad and pickles and a few chips. It was divine. And i said no to dessert! Go me. Ill be a size 10 before i know it, but don't hold your breath. My clothes are getting more and more fitted. Each time i recover from a round of chemo i find i need to eat things that set my mouth ablaze. My taste buds are like exploding fireworks, and i do exaggerate quite a lot there. My buds don't seem to fully recover, but when you actually taste something nice it feels like its multiplied by 100.
And i had a coffee. I went off coffee after the first round of chemo. Ive just had black tea or water ever since. Im gonna be a devil this morning and try a black coffee. I love being a rebel.
Anyway, where was i? Oh yes, the lovely Kelly drove me to Lyndhurst for a Rock Choir prefects meeting, including Chris, our leader. Oh we had a giggle. Theres a few things in the pipeline, but nothing i can tell you about otherwise i would have to kill you, but needless to say i really enjoyed myself. And i enjoyed the car journey with Kelly even if we had to sit in the cold cos of my thermostat malfunction.
So today i will be mainly relaxing (and dozing off). I may attempt a couple of small jobs in the garden, i may not! Either way i need to keep busy later in the day cos i always sleep better if I've had company in the evening, or gone out for the evening.
Anyone got a miners helmet so i can dig a veg patch at 8pm tonight?

27.4.16

To ring the bell or not to ring the bell...that is the question.
When i finished chemo in 2014, the highlight was to ring the bell. It signified the end of the treatment, the joy of knowing you'd beaten it (hopefully!), or maybe for some people, the acceptance that you'd finished chemo that was just to make life a little better for you until sadly you left this mortal coil.
Radiotherapy has a bell!
Last time i rang the bell i was told i was in complete remission. How wrong were they? My cancer comes under the category of 'chemo resistant'.
When i finish radiotherapy i know i still have to go through the chemo and stem cell transplant. I really don't feel like celebrating my last radio with a quick ding dong while everyone cheers and claps. Its not the end of my treatment. I just want to quietly walk out of the department after saying goodbye to all the lovely people that I've met there, every morning for 15 days. Some of them are wicked, such a good sense of humour, a few of them are very poorly. I want to walk out with my 'skechers go walk' shoes clicking and  squeaking on the vinyl flooring and making my arrival and departure so obvious, as they do every morning.  Everyone stops and stares. I couldn't be more obvious if i had speakers on my head blaring out 'Staying Alive' or 'The Final Countdown'.
Am i wrong to be a party pooper in this way?
Do i care?
The staff have been lovely, even when pulling my pants down on the bed and not warning me! Friendly, caring, interested, understanding. Many adjectives for them, and for the extra staff sat on the table who stay in the room when the other staff run for the hills when the 'beam is on'.

Here they are! Always stay with me whilst I'm being fried!

 

And here she is...Varian 1, and you can see the lovely table that i perch precariously on!

The only down side is the wait. Ive only had this once or twice in the 6 appointments so far.
When you arrive you watch the tv screen showing hospital info waiting for the screen shot that says whether your machine is running on time.
'Varian 1 is running on time'.
How can it be running late at 9am?
The last 2 days I've gone in on time, if not early, and one of my radio mates told me he was next and he had to wait for hours. He didn't get home till 1pm. What happened? Did i leave some sort of fall out?
Anyway, it was 'hump' day today. Half way through. And some good tunes were played for me whilst i lay waiting for action.
'I don't like reggae......i love it.' A 10CC number.
'Once i was 7 years old.' Lukas Graham. Nice lyrics!
The lovely Kelly took me today. Whilst she waited for me she went to the Harbour Hospital and got me a lovely hot chocolate. That kept me quiet all the way home. There was method in her madness.
And it was nice to beep at the junior doctors as we drove past them.
Now time to put my feet up!

23.4.16

Its saturday. A radiotherapy free day. And I'm mighty happy about that. I must say the last couple of days the treatment has been quicker and therefore a lot more tolerable. But Im hoping no radio = no symptoms.
And over the last few days I've been out to tea and cakey with my 'driver' which was nice. The response to my request for transport to the hospital has been unbelievable. I never knew i had such caring lovely friends.
So following saturday and sunday without radiotherapy, when i thought i would lose the symptoms, I'm sad to find I'm still nauseous and I'm very dizzy. I can't move too quickly otherwise the room follows a few minutes later making me feel like I've had some of the falling over juice.
So despite watching Jamie Olivers 15 minute meals, i find myself back on the Heinz tinned spaghetti bolognaise - its a 2 minute meal!
And being told to rest.....i have no choice. I fall asleep about 6 times during the day and each time i  wake up, i feel like I've been drugged. I feel so rough for about half an hour, and then i recover to my normal feeling of rough!  Oh whinge, whinge whinge. Anyone would think I'm having a hard time!
Sunday morning, actually its afternoon now, i had crunchy nut cornflakes in bed with a cup of black tea, and now, after an anti sickness tab, I've dragged myself downstairs to the lounge hoping i'll feel more normal.  The sky is blue with white fluffy clouds, one shaped like a dog. The birds are flying round my garden and the wind is blowing my trees and bushes, making me aware of all the pruning i have to do. Theres so much i want to do. I want to get the table and chairs out, and erect (haha i said erect!) a small portable plastic green house in my lean-to where i can grow lettuce, tomatoes, cucumber, etc so that i can eat healthier. Maybe a few herbs growing in the garden too.
So many plans, so little energy. Roll on mid june.
So tomorrow......Morag and Jilly sitting in a tree, R A D I O T H E R A P EEEEE, strap me to a bed and raise my arms up high, and any lymphoma cells can kiss my a** goodbye!
Ha ha that tickled me.
Good bye weekend, see you in 5 days.

20.4.16

Good morning. Ive been a bad girl and not blogged for a whole week, not cos i have nothing to say, but cos i feel soooooooo washed out.
This torment is getting relentless. One thing after another. No time to recover in between tortures.
So the torture of the moment is radiotherapy.
I arrived on monday hoping it would be as i expected. On the bed. Line up. Quick flash. You're free to go. But in true Jilly style, i had to be awkward. I got on the bed/table. A thin plastic/perspex sheet, it can't be soft otherwise it can change your position...and we don't want that. We don't want the beams getting to an important organ. They very quickly realised my tattoos (for radiotherapy, not my jewel on my shoulder or my cancer badge on my wrist) were not quite right. They couldn't line me up. Simon, another colleague was called and i was so worried they were gonna have to start again and do the CT scan and i was thinking of my bruised arms from the stem cell harvest attempts at cannulisation, so i was stressed, so flipping stressed. So Simon came and i was shunted, although i had to shunt myself which isn't easy when I'm stiff and achey before i even start. I moved up the bed and then couldn't place my arms in the position i was supposed to so had my hands on my head.....very similar to when you're in front of the firing squad!
Some foam wedges were put under my top arms and i was told to relax! Try it, its not easy. The wedges didn't work and my arms were precariously wobbling about and shaking for between 15 to 30 minutes. Really.......try it, its almost impossible. However, that was more pleasurable than a CT scan, so i shan't complain!
Number 2 was better, but still takes more time than i expected. My arms still shake but thats something ill have to put up with. I try to imagine I'm laying on a warm sandy beach, with the waves lapping at my feet. What tickles me is when I'm laying on the table and i have my leggings pulled down (their request, I'm not doing it cos I'm an exhibitionist!), they pull my pants down a little without even asking! How very rude! You don't normally get that on a warm sandy beach!
What i do like about it is the waiting room. Everyone greets everyone and they're all so friendly. Its the same faces. I presume the people are like me, having 3 weeks or so of radiotherapy and at the similar time. Theres a lot of joking and laughing, and they're all accepting of their situation. They all discuss their radiotherapy symptoms, and I've found the nausea is common! Yay!
What I'm surprised at is the tiredness. When i get home i lay on the sofa and I'm unconscious in seconds.
Number 3 is now gone, so only 12 left. Lets see if i can cope with them all!

13.4.16

Im happy to be reporting from my lounge on a beautifully sunny day. A day where Chris and Chloe are visiting. A day where at one stage i thought id still be in the Dorset Cancer Centre being mauled and abused.
Needless to say my stem cells were an acceptable amount and i was de-lined and sent home.
Removal of the line was the next bit of anxiety for me. How was it gonna feel? I didn't expect it to be excruciating, i think i just wanna be left alone. Its been quite a few weeks of being pumped with stuff and manhandled. Anyway, the removal. It wasn't bad, just felt like someone was pulling something out of the vein in my groin......and they were! It was about 6 inches long (for any men reading, thats normally 3 inches for you!) and it was quite girthy!!! Sorry i had to use that word after the 3 inch comment. It makes me shudder thinking about it, and i realise at some stage the one in my chest will have to be removed, and that ones had time to make itself feel at home.  Never mind, i'll panic about that one when it happens.
And the lovely Lyn and Martin came to pick me up at about 9.30 which was so nice of them.
Oh it was absolute heaven to be home.
And its quite interesting seeing all my bruises today. Ive been doing that thing where you try to interpret something from inkblots, the Rorschach test. So far i have seen a plate of spaghetti bolognaise, a dog, and a mosquito. One is starting to look remarkably like my cross stitch of the map of USA. That could be handy if i ever go there again.

12.4.16

The excitement of my last GCSF jab last night has done nothing to help me sleep. Its half past flipping 4 and my eyes are wide open. Amanda Lamb is selling houses on TV and i can hear the slight rumble of Sam snoring down stairs.
Today is stem cell harvest day. I feel i should take a wicker basket to  hospital with me to collect my little life savers along with a bunch of carrots, some onions and large bag of potatoes. Sadly I don't think its gonna be as much fun as harvesting a busy allotment.  Although more important!
Every little thing leads to anxiety, something I've not really been used to in the past. Last nights jab let the anxiety go out of the front door with the 2 lovely nurses as they left. I was so happy i even did a little dance, as well as partaking in a bag of mini cheddars. Eating at 10pm! Not something i allow myself to do cos of feeling so stuffed all the time. Im hoping by tonight i will feel a new woman.
The anxiety returned pretty quickly though.
The night terrors are back, albeit fairly mild. I have woken the last 3 nights panicking cos i haven't taken my meds........here we go again. I don't take any meds at nighttime. Last night i recall waking, putting on the light and searching for a push button? I seemed to remember i should have pressed it before bed. It really makes no sense.  And it takes a while for my sleepy head to realise I'm being an idiot.
So here i am. The alarm is set for 7.00am, something quite alien to me, and I'm wide awake now. Time to think about what the day holds for me. Im hoping i don't have to have the huge cannula inserted into my arm, hoping my kick man line is enough. Hoping i can park close by. And hoping the procedure doesn't take too long. My desire is to get home quick whenever I'm in hospital.
Stay right there.......I'll let you know how it goes.
Ive arrived.
Im back in the Dorset Cancer Centre, catchy little name, isn't it? Its nice to see all the girls who did my chemo last time, although id rather still be at home, in bed.
Ive had bloods taken to check my stem cells are suitably prolific and waiting for the results. If they come back too low, i'll eat my spleen!
They came back at 360 as opposed to the 400 last time. The acceptable amount is 15!
So i was transferred to my room where the machine had been cranked up. All the bags were in place to fulfil the procedure. Some special magic cream was applied to my inner elbow for in case they needed to cannulate me.
My Kickman line was my first problem. I was hoping it would be used but unfortunately it set the machine bleeping and alarming, regardless of the fact that they had used a wide bore line specially to accommodate the machine and its actions. So i was threatened with a cannula.
Oh what a disaster.
The cannula needed was a wide bore one - bloody mahoosive!
I was jabbed, jabbed again and then the other arm was attacked. Yes the arm that didn't have the magic cream. It was jabbed, jabbed again and then Jo (my favourite chemo nurse from my first lot of treatment) came and had a go. If anyone can do it, Jo can do it!
Nope.
Fergus came in and he had a fiddle with a tourniquet and my cubital fossa (that area on the inside of the elbow thats is commonly used for taking blood)!
He suggested i have some Medazolam to relax me, hoping that would help.
Ooh it was lovely.
It didn't work tho. My vein still had the barrier across - NO ENTRY.
A consultant anaesthetist, Chris Loew was bribed with a Kit Kat by Fergus to come and insert a femoral line.
He used ultrasound to check out my arm veins, but there was no chance he would get it in there.
I requested medazolam again. He wasn't too keen, but i managed to talk him round.
'With medazolam, you can do what you want,' i said.
Whilst i floated round the room, he inserted a femoral line.
He was lovely. Heres a picture of the little darling. I took the photo when i was high! I did ask his permission about 10 minutes later when i was more normal, whatever that is.

And heres the line, and oh the shame, you can see some hairs! Ive said before i look like a tarantula, and heres the proof! Please forgive me, i know not what i do.
Stem cell retrieval started and the machine didn't play ball. It kept making noises and sending messages.
Eventually it started to do its job. The bag for the plasma filled up, and the bag with the little stem cells filled up.

These are a very few stem cells. Im not hoping to fill the whole bag, but you never can tell.

This is a view of the machine in action. The left bag is heparin which mixes with the blood before its returned to stop it clotting, the next i think is just saline. The little one in the middle I've forgotten! Don't forget i was high for a period of this procedure. The next is my plasma and the last one the stem cells, possibly a little too red cos the machine couldn't find the right level being as there was soooooooo many stem cells.

And whilst I'm posting photos......heres one of the man himself, Dr Jack, and Sammie one of the lovely nurses - although thats another story!! Suffice to say she doesnt like it when her hubby snores. She's been known to throw things!!! Ill leave it there. 

Isn't he lovely? It looks in this picture as if he's lovingly cooked me a meal and is handing over the plate, either that or these are the divorce papers for his wife!

Oh god if he ever read this blog and the comments i make about him, he'd be mortified, and so would I. 

Anyway, long after Fergus and Chris escaped, Sammie and Clair, the specialist nurses weren't convinced i was getting good quality retrieval. 

To cut a long story short, i have been admitted to Sandbanks ward.  Im awaiting a telephone call to tell me if enough cells were taken. If there was enough, they will remove my line and send me home. If there wasn't enough, i have to stay in overnight and do it all again!
Stem cells crossed.

9.4.16

Why do i save everything for best? Ive done it all my life. I can quite honestly say I've bought stuff and its stayed in my wardrobe for years in some cases, whilst i save it for best.
Mary rang me yesterday, my nursey friend. We always end up in tears of laughter, unable to catch our breath, usually for something silly. Don't you just love friends like that? She's the reason I'm questioning saving stuff for best. Don't know how we got onto that subject, but we always go off at a tangent. She saves stuff too.
It made me think i should use all my 'best' stuff now, if it fits of course!
I made a patchwork quilt about 20 years ago, and I've never used it. So yesterday i changed my bed.

After a good nights sleep i know why i haven't used it! See the top bit where the pillows are? Theres a frill. It got on my nerves tickling my nose, and the bottom bit, i hadn't sewn on buttons or velcro or anything, so I'm expecting my quilt to fall out at any time during the night! Listen out for the blue language!

My other catch up project is a cross stitch that i started about 15 years ago. I took it to hospital last time and i actually did some after having put it down for about 10 years. It would be nice to finish it and frame it and put it on the wall somewhere!.

Still got a lot to do. A border all the way round in the fashion of stars and stripes and a load of buildings and signs. Its gonna take a while, so i better get on with it. A new pair of eyes would be beneficial. 

I never save food! Strange that. If its in the fridge, its fair game. And i have a bit of an OCD thing where i have to tidy it up. I can't leave it in the fridge, if it can be eaten....now. 

Saying that, since this recent treatment, i leave things for ages, even to go off and i have to throw it. I just don't have the same desperation to eat it. 

But theres one thing that i can't save........my tears. 

I can't help but cry at everything, not necessarily sad.

My most recent show of emotion was the orchestra that played on Britains Got Talent. They played/sang Don't stop me Now which we have covered at Rock Choir.

It was amazing and i really enjoyed.

My reaction?

'That was amazing. I would press the gold buzzer for that.' Then i erupted into tears. 

Luckily i was alone, therefore my embarrassment was saved!