When you are used to being at the top, you can forget how hard you had to work to get there.
This day started out tough and has continued downhill. My husband’s headache morphed into nausea and he has continued to feel lower and lower. The weather outside actually makes it harder on him to feel good. He’s sitting in the living room looking at the outside wishing that he could take advantage of the nice weather – but he can’t. He can’t walk for any length of time on his leg, it wouldn’t matter anyway because he’s just too dizzy to make it far. He still has to use a walker to get around, which in itself is extremely depressing for a guy who is used to being mobile and on the move. Add to that the headache and nausea and I’d say he’s just a mess.
What do I do to make this any better? Days like this are so challenging – how do I support him and help him without annoying him or coming across as a nag?
There is nothing easy about this journey.
Well it has been two weeks today that we went to the hospital with his blood clot. It has definitely been slow going. His leg and foot remain quite swollen and it is still painful to walk on. It’s taken a toll on him emotionally. Yesterday he was quite withdrawn and quiet. It was apparent just looking at him that he was feeling down. The visiting nurse came by to flush out his picc line and she chatted with him. He had hoped that his leg would be visibly on the mend and that his mobility would have improved by now. She reminded him that it was likely to take upwards of two months for his blood clot to disappear completely. Looking at his leg you can see certain parts where the swelling is going away, but it isn’t going fast enough for him. Today he woke up with a nasty headache and I have to think it is all related to how unhappy he is right now.
We’ve had a couple of days of lovely weather here in Ontario and unfortunately it has actually made him feel worse. To have this great weather and not be able to get out and enjoy it is frustrating. He continues to be lightheaded, likely because of the clot. His clot was his whole left leg, from his foot to his groin – and the leg/foot can be quite cool to the touch. His circulation can’t be great which may be what is causing him to feel woozy. Blood pressure and blood sugars are checked every day and have been pretty good lately. So our hope is that when more of the swelling goes from his leg, it means an improvement in his circulation and his wooziness will diminish.
It’s only been two weeks of a fairly lengthy process so we have to hope that the next couple of weeks we see significant improvement. We had put off his chemo treatment for a week to let the leg have time to heal, and I still think this was a good idea, however, we will proceed with chemo next week to keep up the assault on the cancer cells. In the meantime my role is to try and get him interested and involved in something that keeps his mind off of his leg. Easier said than done I’m afraid.
It’s late and I’m tired. Although things have settled down a bit, the worry never leaves. Today, he was very, very tired and lightheaded. He ended up going down on his knees in the hallway because he was “woozy”. No harm done, but there’s always the what ifs that linger. We are officially at the lowest immune level which mean the highest potential risk for catching infection. So although the nausea is gone, the invisible fears are still all around us. These things bring me back to our painful reality.
When my husband was diagnosed with this no one in the medical field offered us any hope. A simple visit to the emergency room at the hospital ended up with a diagnosis of inoperable lung and bone cancer. The man had been playing tennis the week before and in one day, 24 hours, our world was devastated. The resulting visits to the specialists didn’t give us much to go on. They wanted us to understand that this was a terminal illness. There would be no operations or miracles to come our way. Any treatment would be to gain quality of life, not longevity. The prognosis was given to us in months, not years.
So sometimes, like tonight, when he’s sleeping, I have my moments I cry, even though it doesn’t solve anything, I cry. It doesn’t mean I’ve given up hope, if anything it makes me more determined to prove them wrong. I am painfully aware that somewhere there is a giant clock ticking down the weeks, days and hours, but many people have been given the same “months to live” prognosis and are still alive and kicking years later. What did they do to stop that clock from counting down in real time? That’s what drives us on, the fact that many people have defied the odds and become members of an elite group of survivors. If ever there was a group that we want to get him into it is that one, the true survivors club.