Hi All,
Have posted in some of the different forums but just wanted to ask a question. Kevin was doing so well a couple of weeks out of tx. By Thanksgiving he could eat the meal with the family and could even taste quite a bit. But the longer we go the more his throat seems to hurt. It hurts on the left side. He is back to basically eggs, Ensure and oatmeal. He's going back to work in Alaska on January 3rd and I think is getting a little frustrated with the pain. We really feel like we have gone backwards. Thoughts? Latest scope was 2 weeks ago and everything looked great. This Tuesday he has a high contrast CT.
Thanks,
Kathy

It may be related to the scar tissue. Hopefully his scan is clear... Blessings to you both.

Someone mentioned to me on here that pain and discomfort can increase as time goes on post Tx as nerves begin to heal and recover from the radiation trauma

Hi Kathy,

I have read some of your previous posts and, first, I want to tell you that I admire how you are a such great advocate for your husband. I am sure that your suppport, right from diagnosis, has been incredibly valuable to him to him. I, too, am a caregiver, and know how vital that role is to successful treatment.

My husband's diagnosis and treatment was almost 8 years ago. Yes, they got the cancer, but the after effects of radiation seem to be never ending. Your husband will probably continue to need your help and support for a long time, as new after effects manifest themselves.

When Kevin goes to Alaska, will he be in a place where he can get medical help if needed? Much of Alaska is very isolated. Of course, I don't know Kevin's particular situation. It sounds like he is doing well in many ways, and that is great, but he (and you) should feel very comfortable him about going so far from home and from his support team, just a few months after completing this very trying treatment. The treatment he had is not like other kinds of medical treatment where they just fix it and it is over. I am sure that your doctors can help guide you on this.

Best wishes to you and Kevin.

Very similar story with Simon. After treatment finished, his throat improved, then got sorer. His eating also, slightly improved then went backwards. He has been given the same advice by his medical team as mentioned by HankXavier.

He is now on the slow improve. I think he expected to get a lot better a lot sooner, but is now more realistic about the pace. It's such a long, drawn-out and uncomfortable treatment, it's no surprise people get absolutely fed up.

If Kevin is going back to work on 3 Jan he's doing very well, but do you think he may be going back too soon?

Thanks for your responses. This truly is a lonely place to be. As the caregiver you try to be positive and upbeat but the longer this goes on the more quiet he gets. As far as where he will be in Alaska...he is on the arctic slope. As desolate as you can get, but it is a camp and they do have medics. In an extreme emergency they would fly him out.
Yes, I do think it's too early. I'm beginning to hear doubt in his voice too, but if he doesn't go back he will be terminated and he is our sole provider. We adopted 3 children 2.5 years ago and took my 86 year old mom in a year ago August. (He may want to go back to get away from the zoo!!) The hope is that if he at least makes a presence but can't stay the full 14 days they will keep him on. Then he would come home and have 4-5 weeks again. Not sure if that would fly the next time though. He usually works 3 weeks (21/12 hour days)straight, then comes home for 3 weeks.This first hitch they are letting him work just 2 weeks as it is. I don't know. We have tried to get rid of debt in order for him to be able to either not work or work locally, but of course we were living the American dream when this happened. As everyone knows, we weren't expecting it.
Hopefully the CT tomorrow is clear. Again, I know you've been where we are. The Dr did clear him for work, but he gave him some physical expectations of which he hasn't even attempted. I am also watching him get smaller and smaller. He had the 50lbs to lose, now it's beginning to push it.
Anyway, thanks for listening!! And I don't know if I mentioned my biopsies, but they came back today benign. Phew!

Kathy,
I have to say that I think Kevin is attempting too much. I guess if you are used to the cold, rugged life, maybe it won't bother him, just sounds incredibly demanding to this petite, older, music teacher! I went back to work something like 6 or 7 weeks post treatment part time, and that was rough. Of course kids can be difficult to manage. Lots of folks thought I was crazy for going back that soon, and looking back I see that it might have been rushing things, but I wanted to go back. I see where you are coming from as far as financial needs, but I wish he could have another month at the least, considering the physical demands of a 12 hour day--wow.

As far as a sore throat, my treatment was different from your husband's, but I did keep tensing muscles that would give me a sore throat or ear pain. I seem to have gotten past that now, but you can see why a person would tense muscles after this cancer and ensuing treatment! Then too, there is no way he is healed yet.

Best to you both,
Anne

is it legal to terminate someone who is off work due to illness? It is certainly illegal here in Australia.

Having said that, employers have ways around it and my Alex agreed to be terminated after 12 months because he thought it unfair on the employer. I had a different attitude to it but it isn't my life ...

Employers in the US must walk a fine line regarding terminating an employee due to their medical condition. We have something called Family Medical Leave (FMLA). It entitles any full time employee who has been at their current job for a minimum of 1 year up to 12 weeks off per year to care for either themselves or a closely related relative or dependent. Its up to each employer if the employee would receive any compensation such as sick time, disability, etc. Of course employers who want to get rid of someone can always find a good reason for firing someone. They could end up paying some unemployment or risking a lawsuit but sometimes employees are not worth keeping so they risk it and fire them anyway.

Employees in the US are also protected by the Americans with Disabilities Act. It is dependent on the size of the company as to how much compliance is required. However, cancer patients and survivors are covered under it.

If a cancer survivor returns to work with a diminished ability to perform his or her job, the employer is required to accommodate the disability and find a suitable position for the employee. Also, the treatment process must be accommodated, as well. Large employers are not allowed to terminate employees as a result of absenteeism due to treatment, recovery and/or inability to perform at the level prior to illness.

I wish I didn't need to become aware of this legislation. But, as an unfortunate result of chemotherapy and the misdiagnosis of cancer in our family, we were slapped with the worst case scenario of this situation at the beginning of December.