Alex has had a rocky road through treatment. From the 1st chemo treatment, he endured a massive pneumothorax (collapsed lung) which interfered with his recovery from chemo and stretched us both. For the first 90 days from diagnosis, we expected 6 days in hospital (2 per chemo cycle) and actually achieved 50! Nearly all the other days were caused by an ongoing comedy of errors around the original collapsed lung. Besides having so many holes in his chest we have lost count, he has had 3 collapses, 2 corrective procedures (pleurodeses) and one major op (thoractomy) which nearly killed him. There were 3 emergency admissions - only 1 cancer related, and this was all during his scheduled 9 weeks chemo (3 rounds). One advantage of undergoing chemo whilst in the cardiothoracic ward or Jurassic Park as Alex calls it(referring to the actions of the doctors not the age of the patients) was that he got a single room because he was "purple" and the nurses were scared enough to leave him alone. In our part of the world a single room is a huge bonus because it is the one with the view of the Sydney Harbour Bridge and the Opera House. The Sun rising over the water, and hitting the tiles of the Opera House is enough to make you forget you are sick for 30 minutes every morning. The other bonus was not having to battle peak hour traffic to get to chemo on time as the wardsman just rolled Alex to the 12th floor (lucky devil didn't even have to get out of bed).

The complications did make Alex very sick though and the doctors decided to give him a bonus round of chemo when it became clear he would not be fit for radiation in time. So, 4 or 5 weeks behind schedule we began chemoradiation. He cruised through it(relatively speaking) and the pain from ulcers didn't knock him completely flat until last week - his final week of radiation (although the phlegm drove him mad from day 1 of both chemo and chemoradiation). He is unable to talk, swallow or spit without pain and excess phlegm creates need to swallow and spit often. Alex has elected not to talk and I have been banned from the house to assist in this resolution. I think he has done extraordinarily well considering the poor bugger has been full of cisplatin since the middle of March.

We were on the single figure countdown when things went awry ... 2 days before the end of treatment, his bloods came back crappy and chemo was postponed in favour of a blood transfusion. Alex was devastated. It was supposed to be the last of his 7 cisplatin doses. To add insult to injury, we were told that another chemo cycle would be scheduled the following week which put us back another week from recovery and that houseboat we have been talking about.

Today we had 2 great things happen. An email from the oncologist in response to my question about why we should have to undergo another chemo round if Alex had already finished his radiation. Dr A had the correct answer: We don't! So we are done!!! And have been for 4 days and didn't know it which means we are also 4 days through the worst of the radiation effects!!! Tears and leaping about the place (well, Alex waved his arms about - I did the happy dance)!

Then the 2nd thing happened - I hit the thread on this forum that discusses pain and ulcers and read about the use of Fentanyl. Oooh we haven't tried that one yet and we just happened to have an appointment with our primary physician a today. So I asked the doctor about it. Not a problem. Alex is currently spaced out but feeling like this might be a good solution and we only have a couple of weeks to go before we can start looking forward to teeth, eating, working and finding that houseboat to rent!

Life is good (even if my boyfriend is not talking to me) smile


Karen
Love of Life to Alex T4N2M0 SCC Tonsil, BOT, R lymph nodes
Dx March 2010 51yrs. Unresectable. HPV+ve
Tx Chemo x 3+1 cycles(cisplatin,docetaxel,5FU)- complete May 31
Chemoradiation (IMRTx35 + weekly cisplatin)
Finish Aug 27
Return to work 2 years on
3 years out Aug 27 2013 NED smile
Still underweight