Hi, LWP. You are not whining because there's a sort of wry self-awareness in your tone that is far from a whining sound:) I have felt just like you through both surgery and rsdiation.
A good cry can be cathartic although it's difficult when your kids are young. Writing, writing about your fear, pain, frustration and disappointment can help too. I love what you say about Canada's short but awesome summer because I always wondered how you guys coped with all that SNOW!
I hope you can get adequate pain relief from your RO. I refuse to feel pain if it can be thwarted by drugs. Felt very little during the whole 6 weeks, finishing on 19 May. Was given Oxycodone which I believe is almost identical to morphine and had the benefit in its immediate release form of delivering a mild euphoria. I'm also on anti-depressants and seeing a psychologist. Like you I've had a pile of disasters, one on top of the other and needed help.
I'm older and have no pressing responsibilities but remember how I felt when I got ovarian cancer at 49. First thought is to protect the kids who are just entering adolescence or adult life and it's hard, hard, hard.
Wishing you all the best.

Hi LWP, I sent you a PM, if you look at the flashing icon on the menu bar next to "My stuff," and then select "Messages" you'll see it.

Good luck. PS, I don't think you're a whiner at all, my message is about how to deal with anxiety from a practical and "mechanical" approach.

Good Luck with this business,

Bart

Little update - Week Four starts tomorrow.

The Good News - after some ups and downs - started IV fluids and they have made a bit difference in my pain level. My swallowing was really painful and so I was not able to get too much down, but I didn't find the hydromorphine really that helpful with the swallowing. After I stopped the fluoride trays, my mouth stopped burning as much as it had been.

My doctor recommended I up the dosage of the hydromorphine which made me start to get nauseous... So luckily I had some gravol around and it took a couple of days for my stomach to settle out. But now I am not taking anything for the pain, swallowing is still painful, but not nearly as bad.

I'm hoping to beg and plead and keep the IV hydration for the duration. It's made the world of difference, I know I still need to be eating more (or drinking more calories rather) but at least I seem to have a strategy that is working... for now...

Plus Week Four out of Seven feels good to say! Getting there....

I had 2 bags of IV fluids a day starting the week after treatment for about 5 months. I even carried a little fanny pack pump to work. It was mostly because the Cisplatin caused some creatinine issues but I felt so much better they kept doing it until the creatinine came back down.

Glad you've seen some improvement. Small victories add up.

It'a surprises me that ports and at least weekly fluids are not standard for our Tx. After my Tx nearly killed me literally, I begged Moffitt to do that to all future patients but they said I was the exception....yeah RIGHT!

Sometimes a little drama in the doctor's office (tears work) saves big drama like being hospitalized and going off-protocol for your treatment. And you really want to stay on protocol to beat this thing and get back to the horses.

Best wishes for the remainder of your treatment. And remember, your doctor listening to your communications isn't nearly as bad as what, say, a cranky mare might do to the vet.
Maria

Another update! I am mid way through Week 5 - and technically 66% there! Not that I am counting down the days, hours and minutes of this.... treatment.... journey... hell???

So - had a PICC line put in place today, even though I was struggling with tummy troubles. I am still struggling to find meal options. Ensure, One Resource, Boost all do NOT agree with my tummy. At all - I learned that the hard way (almost a very embarrassing situation avoided only by parking in a completely illegal spot and rushing into the nearest washroom!) that they are not a good fit for me. I am quasi-lactose intolerant - there is some stuff I can take, and some I can't. And, I can't take them...

At least the PICC line makes the hydration easier, and the WaterPik has been a lifesaver - really has improved my mouth hygiene and reduced the pain I was feeling. But the days of painkillers are back now...

I'm just hoping that my jaw continues to open enough to get to the end of the treatment - it's not a happy bunny right now

11 to go... I can see the finish line glimmering in the distance...

Thanks all for the support - your words help...

Seriously about the lactose intolerance. My mom is not lactose intolerant at all so all is good, but if it were me? I would be in a world of calorie hurt.

LWP,

Listen you must find a way to get the calories down and the water down without discomfort and nausea. Unfortunately it's probably going to get worse, even much worse from now until about 3 weeks post Tx. I would consider a nasal tube. It's a non surgical option to the PEG and it can REALLY help bypass the mouth pain and the gag reflex when swallowing.

I didnt realize any dairy products were part of the over the counter formulas. Get a nasal tube ASAP. With a nasal tube you can ask for prescription formulas that are made for people who are lactose intolerant.

Bottom line is you MUST get more calories in or you will soon hit a brick wall, probably ending with hospitalization. Ive been down that road and its horrible. Im sure I gave you the minimums and explained how important they were... at least 2500 calories and 48-64 oz of water every single day until you hit your one year anniversary post rads.

Good luck!!!