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!