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!