Hi Everyone, (again)
Firstly, let me say a big THANKS to all of you for your posts and advice to me throughout the past few difficult months.
Husband finished TX May 11. May 3 we had to take to Emergency as he was severely dehydrated. Last (7th) chemo scheduled that day, cancelled. Admitted in hospital and stayed 9 days. Blood sugar over 1000! Heart rate high, dehydrated, pneumonia et al. Put on insulin and a cocktail of drugs. Had to take break of 4 days of Rad, resumed day 5 with only 5 more TX to go. Finished May 11 and home May 12. Stayed on numerous meds. Had home health care for aprox 3 wks.
Now it's been 7 wks post TX and he's doing SO MUCH BETTER! Except for swallowing. Having speech/swallowing therapy twice wkly. Waiting to have Esophagol Dilation. (How do you spell all these looooong medical words?)!!!!
His lymphocytes are still very low so he's on antibiotics to prevent recurrence of pneumonia and now off the insulin as sugar is down, but on Riomet to lower BS and help build up lymphocytes. Ongoing mucositis which is ghastly! Had some diarrhea due to meds. But, considering what his body has been through, he is doing extremely well and we are humbled and grateful! We have RO follow up July 8 and surgeon follow up Aug 6 with PET CT Scan same day and peg and port removed Aug 8, providing he can take food or liquids by mouth.
Now my turn. I've been through rough times in my life but nothing could have prepared me for this. Watching someone you love suffer through this is so devastating. Putting on a bright, happy face and positive attitude takes tremendous effort, while on the inside there is fear, hopelessness, anger, depression, exhaustion, and sometimes, numbness. It all feels like a nightmare that you will awake from and then that sinking feeling in the pit of your stomach tells you it's really happening. On my worst days of feeling I couldn't cope anymore, I would tell myself, it's worse for him, he's the one with cancer, and then put on my happy face again. I held myself together, hardly shed a tear, even while he was in hospital. After sharing 12 hour shifts with my step son at the hospital, I would be so exhausted I could hardly eat and would fall into bed and then not be able to sleep. I was so distraught I couldn't bear to look at this site. Every moment I was away from my husband I felt guilty I wasn't by his side, although I hardly left his side. There's always an upside, I did lose weight! Although I wouldn't recommend the diet! The worst for me was when he came home from the hospital and I was so anxious that I wouldn't be able to care for him properly. I had to make a graph of all the meds (which was two pages long) so I could keep track of times and doses. I also had to give him insulin shots 4 times daily (and I was always afraid of needles! Not now). I called the nurses umpteen times a day with questions, and according to my daughter in law, drove them crazy IN the hospital and OUT! As I walked down the hallway of the hospital, I could see them looking at me and whispering "Quick, it's her. Duck!" LOL. Poor things. About half way through the hospital stay, I had my breakdown. And boy, was it a breakdown. I'm English, we keep a stiff upper lip, and just get on with it, but we had a nasty RO who wanted to over radiate my love and he confronted me that week. (We had been for a second opinion with a wonderful RO and have since transferred all records and he will be our RO from now on). So I lost it, just sobbed and sobbed, heart racing, shaking all over, tears and snot flying everywhere, all in front of the nasty (previous) RO and all the nurses and ambulance crew. The nurses were so kind and I will always remember that.
So, back to "home." It's been 7 weeks, and at first, it was dreadful. I drank a few "bowls" of wine to get through some nights, I can tell you. But, as the days and weeks have gone by, it's getting easier and to see my husband roll his eyes upwards as I remind (nag) him about taking his meds and exercising etc, it fills me with joy as I know he's on the mend! I so look forward to the day after he has the peg removed so I can give him the hugest belly hug ever. We have good days and bad, but mostly it's all good now. Of course, we are worried about the upcoming tests and procedures and results, but more than anything we are looking forward to putting this behind us, learning from the experience and moving on in the best way we can by enjoying every moment, knowing that life is precious and being grateful for what we have and who we have in our lives and counting our blessings.
I intend to keep checking out this site and want to be a 'help' to anyone else out there, especially caregivers. Give yourselves a hug, cry when you need to, but know that you WILL get through this and there most certainly, is a light at the end of the tunnel.
Thank you, (for reading my book!)
Pamela

Great update, Pamela! I love seeing posts like this. It gives others hope which is what all the patients and caregivers who are in the middle of their struggle need. Its like the beacon of the lighthouse to a lost sailor.

Wishing you and your husband continued improvements with the recovery process.

Oh Pamela. This brought back lots of awful memories and emotions. I too was the wife they all tried their best to avoid - or at least that's what I thought. The second time around was an awful month of living, eating and breathing the whole hospital thing. It is so much better and easier to be the staff member. Not the patient's Wife.
But you are right. We do indeed get through all this. Our lives move on, slowly but surely. After some time we do realise that things are better. Not ever the same. Better, but different. I also am grateful. So grateful for Life and that I still have my Darling.
Still have angst prior to each checkup/scope though. Guess that wont ever change, though I don't really dwell on these things.
Everything you said resonated with me.
I wish you and your Darling much life and great joy,
Tammy

Dear Pamela,I went through the same roller-coaster ride. It's been exactly six months since the end of my husband's Tx and while I have seen tremendous improvement in his mood and energy level, we have had to deal with other health issues which are either the side effects of the Tx (low thyroid level, swallowing difficulties) or recurrence of conditions which were under control before but have now returned probably because of his low resistance (pericarditis)after Tx, or newly discovered conditions (gallstones and sleep apnea). There are days when it's been hard to cope, but I have to say that our nurse/case manager has been very supportive even though I keep bugging her.

All sounds normal to me. lol

Glad the worst is over.

Pamela,
Thanks for the update. It is always good to hear from the caregivers to see what they face as the patient struggles to mend.

Glad to hear things are improving and much more sunny days ahead.

don

Thank you for sharing your "book". What a journey you and your husband have been through.
It gives me hope that there is "light at the end of the tunnel". My husband is at the end of his 2nd week of radiation and Monday will be 4 of 7 days of chemo.
Today is the first day of the PEG tube, it is has been hard for him to swallow, without the food feeling like it is stuck in his upper chest. I was hoping that he would be one of the few, who experienced little or no side effects of the treatment. Obviously, not to be.
So as we start dealing with this "junk" stuff that comes with this treatment, your post has been encouraging to me, Pamela.

At the risk of sounding totally ignorant, as I am new to this Forum, what does NED stand for? I have looked at the list of abbreviations and have not found what it means. I know that when you folks tell me, I will be smacking myself for not being able to figure it out.
Gloria & Tammy use it in their signature and I notice that PaulB also has used it twice in his signature.
????
Thank you!
Barbara, wife & caregiver of Richard

no evidence of disease

AHHA.... N.E.D. Good stuff!