Chemo-moaning session

It seems that I had it easy first time round on Chemotherapy.  I was given a dosage of a single drug over a period of 5 days - it was a pain to have to carry the pump around, I got some mouth sores and a little nauseous, and I was permanently tired, but that was the extent of the side effects.

This time's a bit different.  I have a 2-hour infusion session on a Monday where they pump me with 3 different drugs in one sitting, then I have to carry a pump for 2 days to finish me off.  They warned me loud and clear about what side-effects were going to come, and boy have they come.



One of the drugs I am taking is called Oxaliplatin, and seems to be responsible for much of what is described below.

Difficulty swallowing and shortness of breath.  The infusion nurse warned me that I may get a feeling like I'm being strangled.  This hasn't happened yet.  What has happened is that when I try to eat, I get a sort of burning sensation in the back of the throat, as if my body is wanting to reject what I am trying to feed it.  It goes away after the first couple of mouthfuls, but if you take a break of even a few minutes, the sensation comes back! 

Cold foods and drinks are absolutely out - even tap water is verging on too much.  When you put something cold in your mouth, there is this sharp rising pain.

Cold sensitivity.  Doesn't sound like a biggie, especially in California, right?  But I walked outside to get the mail last night - it was very gently drizzling and a little on the cool side.  My hands felt like they were being stabbed! I've never felt anything like it! Later in the evening, the loo overflowed and I tried to clear it up with some old towels.  During the process, I stepped on a wet towel in my socks and suddenly had the most shockingly cold sensation, which would not go away for about 15 minutes!  It's remarkably debilitating and not a great deal of fun!

Of course, being forewarned is very handy, but I really wasn't prepared for the full reality until I have started to experience it!


On top of all this, I am still lethargic and slow - can't really do any heavy lifting.  I've driven to the store and back, which went OK, but I did have to sit down for an hour afterwards.  I really don't feel ready to face work again - I think the drive there would pretty much wipe me out!



Sorry for the whinge, but it's been a bit of a shock to see how much this is effecting me this time around,  hopefully it will ease over time.  Next appointment is Wednesday to get the pump removed, then I have nearly 2 weeks with nothing until my next infusion session! Yay!

Chemo live

Sitting in the infusion room in a comfy  reclining chair and a warm blanket,  getting pumped full of stuff that is trying to make me feel shitty! Woohoo!

There's a list off side effects that may our may not occur,  some of which don't seem too bad,  but a couple off them sound pretty scary.

I described my Friday experience to the pharmacist and he agreed that it was probably as I had assumed, a result of  the various drugs I'd been given,  and possibly a migraine thrown in for good measure.  That explanation will do for me.

It's a hive  of  activity in here and everyone is very positive in  a trying situation - It's very obvious that I'm a newbie,  the old hands just lay back and doze off - maybe next time that can be me!  Still about am hour to go and then I will be given my pump to carry round for the next two days.

I seem to only be writing on Sundays

It's been a whole week - so sorry.

Ok, so... main thing this week was the  port insertion,  which went fairly well and all the staff and doctors were kind and charming. 

The next day was tricky.  We've been having well problems at home and the work to fix it was due to new finish that day.  Jean was hiring a van and shooting off to somewhere on the peninsula to pick up a table and chairs,  so I had the simple task of opening the door,  saying "Hi", and making sure they had everything they needed to get it done.  The day started with a headache,  so I took my oxycodone and my tylenol and thought nothing of it. 

Before long I was reduced to lying on the sofa with a blanket over my head.  If I tried to read anything,  I simply couldn't read what it said.  I had to spell it out to myself letter by letter and then try to make sense of the next word and then try to  link them together.  I tried sending Jean a text message and it took me about 10 minutes to write a short message. After I sent it,  I realised that I had repeated one word multiple times in a row! It was scary and deeply worrying.

This is the exact text  of  the message I sent to Jean:

"I really can't think think straigit at  the moment and i really don't know know know know know why?"

Later I answered a phone call from a solar engineer who wanted to talk about the quote he wants to give us.  I have not a clue what he said or what I said in  reply!

Later in  the day,  I threw up and managed to sleep for a while and that seemed to help get me straightened out.

I'm assuming that it was a result of the drugs I've been on, and maybe the additional drugs used during the port placement, so I have decided to stop the oxycodone right away - the level of  pain is way more tolerable now,  so it should not be a problem.

So next up are.....More new drugs!

Chemotherapy part two starts now.  I'll try to write in  detail about what it  involves and how it goes.  It's yet another start of yet another phase of this journey.

Still moving very slowly!

I've been home for nearly 2 weeks now and am getting back to normal.  Still have pain from the incisions and am still learning to deal with "the bag".

Good appointment with Dr Akhtar, my oncologist.  He told me that the pre-Xmas treatment had shrunk the tumour down to less than a centimeter and that the operation had removed all trace of disease.  We now embark on another round of Chemo to get rid of the untraceable remains!  This is scheduled to begin on March 20th.  There will be 8 fortnightly treatments and I will have to carry a pump around for 2 days after each one.  

He said that later on in the treatment, delaying a session by a week or so would not be a problem, so it looks like a UK trip might be possible - Yay!
 
Also visited another Ostomy nurse down in San Rafael, who was very encouraging and kind. She reckoned that my stoma should stay pretty constant at 1 and 1/8th inch, so has ordered me new bags that I will not have to cut to size, which will be nice!

I had to renew my Oxycodone prescription because the pain is not contained by Acetaminaphen alone, but I am trying to stretch out the time between taking them and hopefully will wean myself off pretty soon.

Today's Sunday, so that means next week is another round of appointments - Dr Alkoraishi down in SF on Tuesday and to the Santa Rosa hospital on Thursday to have a port installed in my chest to facilitate the chemo - it's a bit more simple to manage than the picc line, which would have been the alternative.  Because I seem to react to the dressings they use with the Picc, I hope that I'm going to be better off with the port, even though the installation is a more complicated procedure.

1 Week since surgery

Time flies,  eh?

Pain is still bad,  but manageable - I'm trying not to reach for the Oxycodone at the stroke of the 4th hour,  and last night I woke up only twice,  so that it's progress.

I've been walking round the garden,  and up and down the stairs,  but have not moved far from the reclining chair these last two days.

I'm getting used to the bag,  but am extremely self conscious about it - emptying it is now just a chore rather than a disgusting ordeal.  I'm yet to embark upon a bag change unassisted - that will happen on Saturday. 

I got 3 months supplies through the mail today,  so should anything good awry,  I will be OK for backup. 

Next week I have appointments with my oncologist here in Santa Rosa and with an Ostomy nurse down in San Raphael,  then a follow- up with my surgeon the next week down in SF.  After all that I should know when the  next set of chemo is going to start and end.