Triple Whammy or How to Cope with Multiple Cancers: Part II – “Dearly Beloved” – by HD
Last week I talked about how therapeutic it was for me to learn all I could about my cancers and their treatment options. It gave me a feeling of actively “doing” something to fight back, and it enabled me to make a few important decisions regarding my treatment.
Today, I like to write about the importance of having a support system. What do I mean by that? – Well, one really should not fight cancer all alone. It is such a monumental task that I think we all need help with that.
Of course ones own spouse/partner is probably the most important person in your support system. If your spouse is not part of the team, than fighting this illness becomes so much harder. If you don’t have a spouse, maybe you have a good/best friend, or a brother/sister, or other relative that can fulfill this vital and important role for you. – For me, the support of my wife was absolutely crucial, I could not have gone through this without her.
What does one expect from such a support person? Well, that is a really good question and rather hard to put into words. – Loyalty, optimism, physical help, emotional help, friendship, guidance, protection, comfort, care and love, – all these words come to my mind when I try to describe this important role.
It is a very stressful and emotionally difficult job. Seeing someone you love suffer is tough enough as it is, but being cheery and optimistic around that sick person, when you perhaps feel down yourself, can be a tremendous burden.
Unfortunately sometimes the stress of a life-threatening illness is just too much for a relationship; and, sadly, I know of cases where the marriage or relationship broke apart because of a bout with cancer. (Usually the relationship was already weakened before the illness struck)
Right from the beginning of my diagnosis, my wife accompanied me to all my doctor visits. She came right into the exam rooms with me. One of the people I interviewed suggested to create a note book with all the relevant information, so my wife became the secretary to write things down for me. Besides, four ears hear more than just two, and it was really helpful when I asked things like “did I hear the doctor right when he said he wants to do such and such with me?”.
Also, as the medications started to pile up, she kept track of the prescriptions, whether they were to be taken on an empty stomach, or with food, or had interactions with other medications; or if they were to be taken only on nights with a bright full moon, or only if a certain party was in power in Washington. DC – As you can see, it became complicated fast, and she sorted through all this, and the notes helped greatly.
She also thought of good questions to ask the doctors, questions that I didn’t think of, or which would clarify things that were said before. And, when a doctor started to speak “medi-gibberish”, neither of us were too shy to ask to please translate that into regular English. I found it helpful to paraphrase back to the doctor how I understood what was said, that way he/she had a chance to correct me when I was wrong about something.
When you are fighting cancers, you have your plate very full, and there are things that you just don’t want to deal with at that time. Insurance worries come to mind. The good folks at our insurance company wanted to send me to a radiation facility that was 100 miles (160 km) away, one way that is. All only because this clinic was “in their plan”. Well, the good wife, with the help of our wonderful local cancer center in town (who agreed to accept as their payment whatever our insurance would allow), was able to fight the giants and change their minds; and I had my radiation sessions locally. That was a huge relief. Can you imaging the trouble and cost for staying seven weeks at a hotel in a strange town (that is how long my radiation sessions to my neck lasted).
The folks at our local cancer center were really magnificent. Not just the radiology oncologist doctor, but also the nurses, the receptionists, the business people, and of course the radiology technicians. I don’t know whether this center screened these people for having great and passionate empathy when they hired them, but they really made me feel welcome, and knew exactly how a patient and their family feels when they walk through their doors. – Unfortunately I cannot say the same of some of the other doctor offices I had to visit. Some of their reception staff (not so much the nurses) were bordering on rude; they certainly gave the impression that I as a patient was intruding onto their turf.
Besides my wonderful wife, friends and relatives were also great sources for moral and often practical support. – I already mentioned this physician who is our friend. She is also a accomplished musician, and while I was in the midst of my treatment, she and another musician come up to our house (a 110 mile drive) and performed a classical guitar and violin concert; imagine, just for me!!. – Even better, yet another friend had a piece of classical music just newly composed, and he gave permission that it might be performed for me for the very first time. A world premier. Needless to say that I was speechless and very, very touched by this show of extraordinary compassion and friendship. Well above and beyond the call of duty, I’d say.
The neighbors were wonderful, and the people of groups that I am associated with (like the arts center here in town), they all offered their help and support. If you belong to a religious or spiritual group, those also are great sources for support and comfort. So please, make use of your connections, it might be useful in pulling you through this crisis.
I didn’t make a secret at all of my illness. Right from the beginning I spoke openly and candidly about the cancers. It helped me deal with it while looking another person straight into the face.
The internet was a good source for additional support as well. One site I am active in is called www.sparkpeople.com, it deals with weight-loss and healthy life style. As soon as I mentioned something in this chat group about my medical problems (like, “I think I will stop the calorie counting for a whee while”) this great little group became part of my support system, they really rooted for me throughout the treatments, and made sure I checked in with them regularly.
As some of you know, I am from Germany, and all of my family (and many friends) are still over there; so, I had the problem of letting them know long distance what was going on with my health. After a while it became too cumbersome for me to write emails and do phone calls with each and every one them, so first I created an email distributed letter (one in English, another in German), and soon after that, I moved the set of letters onto a website and sort of transformed it into a bilingual blog. You can read it here.
With this website I now was able to give them all frequent updates and let them know what was happening to me in this fight. Great tool!
And, like the Dear Thyroid letters, writing about my illness was also therapeutic for me. Sometimes I was writing more for my own good, than for the sake of informing others. – I was also told by some other cancer sufferers that they started a blog or a good old paper diary about their own struggles.
Somebody described the fight against cancer(s) as a walk through a gloomy, dark, and unknown valley. The path is strenuous, often uphill, and sometimes very windy; and you never know what lurks around the next corner. I liked this analogy very much and now can well related to it. – So, being able to “lean” on a dearly beloved person, or group of people, during this tough journey was very comforting and reassuring.
What are your most important support systems? What advice can you give to fellow cancer sufferers? We want to hear from you, please chime in by writing a comment.
In the next segment of this series I want to write about positive thinking, motivation, and attitude to keep on fighting! See you then!
Here is to your health!
HD in Oregon
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