Hi there all. I just want to pop in to say hullo. It's been a year since my late husband began to feel uncomfortable. After months of speculation and tests, he was diagnosed with ICC on 21 December 2014. He died exactly 3 months later.
Those 3 months were a whirlwind, or should I say a hurricane, of activity.
I nursed him 24/7, ran his business and managed 12 staff members from our dining room table. I never knew I had the strength and looking back, I do not know how I coped. After he died, things did not get better for me. We thought we had put all the legalities in place, but little did I know how much paperwork is involved when the owner of a business dies! I do not believe that I have begun to mourn yet, in the full sense of the word. The tears I cry are as a result of frustration.
There are many lessons I learnt which I hope will help some of you, in your day-to-day battle with this cancer.
* No question is "stupid" - ask the oncologist everything you need to know. And if you do not understand what he/she is saying. Ask them to speak normal English!
*The oncologists do not want to give a prognosis for this cancer. This discussion group was a source of much information and what I read here, helped me to realize that he would not have very long and to get things in order.
* Get the patient onto a liquid meal replacement immediately. Even if he/she is eating solid food, the body does not have the same ability to digest everything. Meal replacements are easily absorbed into the system. My husband made use of LifeGain, Forti-Sip and Nestles' Resource.
*Set up a timetable for medication. Have the times for each medication in columns and tick off when the medication is given to the patient. This helped us enormously as he had extreme pain and often asked for pain medication. The time table helped us to establish if any tablet was due or if it was too soon. IT also helped him to use his mind over the pain when he knew he could not have a tablet for another hour or what.
* Get as much sleep as possible. When the patient sleeps during the day, do the same. The house work and laundry can wait.
* If anyone asks if they can help in anyway, give them a bag of laundry to do for you!!! On the days when there is a doctor/oncologist appointment or the patient is in hospital, ask a friend or family member to vacuum your house and do other "noisy" tasks around the house.
*One needs to be sensitive about photographs. But if the patient is willing, get as many as possible in the early stages. Towards the end, my husband did not want the camera near him!
*Visitors can be a problem. Visitors were always welcome but I took control of the situation. IF someone indicated that they wanted to visit, I decided if they could, based on a few criteria. If they had had no contact with him for a long time, I seldom let these people visit. But I did if he asked for someone he had not seen for a long time. I based all visits on his state of mind and condition of his illness on that day. 5 – 10 minutes became a norm. Towards the end, he began forgetting people. A friend visited on a weekend, and returned the following Tuesday. By the 2nd visit, my husband did not know who he was.
*My husband felt that he was “labelled”. As this cancer is not common in our country, many oncologists came to examine him during his hospital visits. If possible, request that a certain few practitioners deal with the patient.
*Nursing staff are amazing people. Allow them to do their work with as little interference as possible. As loved ones, we tend to want to do everything for the patient, and often the nurses may do things a little differently to what we would. But remember that they are trained and paid to do what they do and they have the best interests of the patient at heart.
I would like to say to all, my thoughts are with you. Don’t give up, the treatments work differently for each one. Laugh often. All the best.