A picture of a glacier taken in Alberta, Canada during one of our travels.
Fatigue – There are different definitions provided for this as a noun including: “acauseofweariness;slowordeal;exertion” or “atiringactivityoreffort” (Source: Dictionary.com). Repeatedly throughout this process, from our preliminary discussions with our GP to the meetings with Oncology, we have discussed the side effects of chemotherapy particularly fatigue. To be sure, this is one of the most debilitating things to deal with. Normally when I write these pieces I don’t confer with my husband, after all this is my blog, my thoughts and my opinions, but for this one I did. I asked him to describe what the fatigue he experiences is like. I know what I see, I don’t know what he feels.
He finds the fatigue frustrating, debilitating and discouraging. More than anything else, the fatigue makes him question why he is doing this. A day goes by and he doesn’t know where it went. He sleeps more than he is awake, some days he can get up to 12 to 14 hours of sleep.
He finds it an effort to do the simplest things. He believes that fatigue and apathy go hand in hand. When there is any physical exertion required he has to psych himself up for it, something as basic as getting up from the bed to go to the bathroom is exhausting. He has no concept of time; his perception of time is skewed. He may take 20 minutes sitting at the side of the bed before he is able to get into it – time has no meaning at all. In day-to-day activities, he has no interest in doing much of anything because he can’t participate at any level – he doesn’t have the strength or stamina.
Over the course of this journey we have discussed many different things – this side effect is the most challenging because it is the one most difficult for him. Activity, involvement, creativity and fun are things near and dear to his heart, and right now they are out of reach. So each day he pushes himself to try to do a little bit more because he knows he will feel better for it, but to have to push himself to do such basic tasks reminds him of how much this disease has broken him down. I have learnt to listen more than speak when he vents about this. He knows what he needs to do, I don’t have to remind him.
One of the stations for chemotherapy at our local hospital. Lots of windows and natural light.
We are back at it again today. At the hospital in the Chemo Suite. Interesting how next to no one here wears a mask and yet all around us people are sneezing and coughing. Not my husband – he wears his mask throughout the whole process. It is cold and flu season so why take chances?
My husband woke up with very high blood pressure – remarkably high 172\94. He slept poorly and it showed. He is more anxious this time than for any other treatment. This is because of the blood clot and the fact that he had three weeks of feeling lousy after treatment 2. It was hard to get him going and out the door this morning needless to say.
Fortunately we have a very professional nurse today – very informative. You can tell she loves her job. We spoke about the blood clot and his concern about some slight swelling he has had in his other foot – could it be another clot? The nurse said it was likely just some fluid retention and would be highly unlikely that another clot had formed since he is on a high dose of Fragmin which should prevent the existing clot from worsening and the body from making more.
I watch as the chemo drug flows into his body and see his colour go from healthy to an ashen waxen colour. His body language is remarkably telling too, his shoulders slump and he appears very fatigued. By the time the treatment is over it has been five hours and he is beat. We pack up and head home. No formal dinner tonight, whatever I can get into him I feel lucky about. So two bowls of soup, one slice of bread, a couple cups of tea and that’s about it. I’ve got jello ready for later if he fancies something. It’s likely fluids for the rest of the evening – but at least it is some sort of nourishment.
We have the visiting nurse coming to the house tomorrow to do a litre of hydration – very slowly, at least a five hour drip. This is in deference to the blood clot. To allow his body to process the fluids a bit better. As always I am thankful when we successfully get through each day (and night).
Our garden is watched over by the “Travellers”; sculptures created by my husband. To me they are organic and harmonious, a peaceful addition to the landscape.
This is the challenge isn’t it? How to stay upbeat when you just feel like crap. I’ve watched my husband over the last two weeks get leveled by chemo, a blood clot, thrush, headaches, and nausea. The side effects of the disease and the treatment are debilitating. We know that success in battling cancer depends on the psychological state of the individual – which speaks volumes to those survivors since both the disease and treatment drag you down. Ultimately it comes down to small time pain and hardship for long term gain. That’s the prize isn’t it – long term gain. The present setbacks have to be put into perspective as temporary with the goal firmly ahead of getting past them and into a state of harmony and health. It’s finding a strategy or a method that works for the individual to keep them looking forward.
For us our strategy is keeping focused on near future events. Like an Art Show in October that he’d like to put a picture in. Like having the family home for Christmas and enjoying just being together. Like a new grand baby due in February. These things keep us going, keep him emotionally grounded, and provide a reason for going through all that he is going through. It helps to have a strong support network too and in that way we are very fortunate. Wherever this journey may take us we know that we have a web of family and friends gently behind us to catch us if we falter. Thank you all.
Yesterday we went to the dentist. Our Oncologist had requested a dental check up as part of the ongoing treatment plan for my husband’s cancer. My husband’s bones are quite thin, brittle and fragile as a result of the bone cancer and the subsequent radiation. He’s already had an injection of a bone strengthening agent which he will get every six months. The Oncologist has also recommended a bone “infusion” as part of my husband’s treatment. This will be administered at home through the use of a drip.
Prior to commencing the therapy my husband required a dental inspection to ensure that all is well. One of the potential side effects of the drug can be osteonecrosis of the jaw, which is quite painful as healthy bone tissue in the jaw dies. Needless to say, this side effect can cause the patient all sorts of grief. The treatment cannot commence without a dental inspection to ensure that there are no major issues with the patient related to the teeth and jaw.
When I had made the appointment I had advised the dentist that my husband was on a blood thinner as part of the cancer treatment. This was important and meant that they deferred cleaning his teeth. When we attended the dentist’s office we went through all the medications that my husband is presently on, after which they did some x-rays and an inspection. He passed with flying colors. We also talked about thrush and bacteria in the mouth. The dentist and the dental technician gave us some great tips on how to prevent mouth sores and keep thrush at bay. We left with a prescription for a mouth wash in the event he develops mouth sores. I will hold on to the script and hopefully won’t have to get it filled.
I think the dental appointment was very important – regardless of whether he takes the infusion or not. It helps to know that your teeth, jaw, etc., are in good shape and that you have no issues brewing there. So I think it was a good thing, however, I do have questions about the “infusion” and what that means. He’s getting an injection already for his bone density, what will the “infusion” do, does he need both? What’s the difference? Are there any side effects to the infusion? What does it do in the body? What is the timing for it? I want his chemo to have optimal effect and not make the body work twice as hard at processing another treatment at the same time.
We see the Oncologist next week – lucky guy – so many questions, so much to learn ..
So we are prepping this week for chemo on Wednesday – things we need to do and what we can expect. We got a call last week to get the much needed B12 shot for energy. (Thanks for the suggestion!) We also were instructed to start taking folic acid daily for five days preceding the chemo start date, continue throughout and for 15 days after the last treatment.
Additional advice was to start increasing intake of protein especially on treatment day. An egg, peameal bacon or something similar to start the day. Our visiting nurse says that going in well hydrated is essential and to continue to hydrate throughout and after the session will make it easier on him. The picc line will need to be flushed on Thursday and so this will be an opportunity for the nurse to visit the house to check on him. We also have our GP visiting on Friday. So at least there will be some medical professionals to help us through this first treatment.
It is a frightening process and it is almost upon us. Positive thoughts and positive energy will help get us through this.