Musings and random thoughts......

Speak your mind, and make sure to clarify:
The reason for this thought is that people in general hear you speak, but don't listen before they make up their mind of what you're saying. Bad thing can be that the rest of the interactions will develop from there.
Let me explain with 2 very clear instances :-)
- When I got the result from the biopsy as: "We don't know what it is, but it's not cancer. It's an incapsulated infection or something" my first thought was WTF that's assenine, my second was a little better formulated, and exactly my question to the doctor: "If you don't know what it is, how can you be sure it's not cancer?" This was not because I wanted it to BE cancer, as his answer implied, but merely me trying to understand how they had excluded it, so I could rest easy. When he answered that "I should be happy with the answer, and not want to have something",  I was so taken aback that I didn't clarify why I asked or what the information was that I was after.  This had no further impact in my treatment at the time as it was a follow-up to the surgery, nothing more, but it kept me from trusting that I was "safe".
- The second instance was after my treatment ended, and we had moved to The Netherlands, but the impact was much bigger. When the physician asked me what I was thinking about having a clear test, I told him: "I have to get used to being healthy" but didn't finish the thought out loud, by adding that I had to start trusting my body, that a sneeze was just a sneeze, having an upset stomach was ok and muscle pain, was just that.... By not clarifying he assumed I didn't want to be healthy, and after that, every time I had a question, he waved it off as "the problem only being in my head. I was clear and shouldn't dwell on it" and my wondering why I could walk easily on a treadmill but couldn't breath outside, resulted in a "there there..... don't worry about it. You're getting older" attitude. The fact that the whole check up consisted of a bloodtest and nothing else, while in The States, it was a check of lymph-nodes, nails, spleen and a bloodtest had me freaked out but was seen as "worrying about something that was not an issue"......

Sooooooo if you have a question, make sure you keep pushing until you either get your point across, or an answer you can work with :-)

 

Find something to smile about at least once a day or better yet, laugh out loud. I know this sounds like some "touchy feely crap" but I'm serious. It works wonders. Even if it is just watching the birds on a bird feeder, or a squirrel running across a powerline, find something or someone other than your current predicament to feel good about. I sincerely believe, that part of my recovery, was the fact that I could be something else than a "patient" when I was watching the world go by on our Sunday drives, while I was not allowed to be around people because of my bloodcount. On weekdays, when Mike was working, I would watch movies, either on my laptop, or on the TV, depending on whether I could move that day, or not. It helped that we both have a somewhat twisted sense of humor, but seriously.... laughing makes the shit that you're dealing with a whole lot less heavy to carry!

 

NEVER submit!  yes the pain will still be there, as is the tiredness after being awake for 3 days after chemo, the difference in taste, the bonedeep cold followed by hotflashes, but that is not all that you are, nor is it all you  should accept. NEVER accept that all you are is a patient. Never accept people talking about you to your companion as if you were not aware, and most of all, never accept that your recovery has a ceiling. If I had done that, I would not be walking now, nor would I be able to type this blog. I was told that "whatever feeling you have in your hands and feet after 6 months, is as much as you'll get" and "after 6 months, there's not much improvement expected, so you'll have to find a way to live with it". 

At that 6 month mark, my fingers would not bend, I would pick up things with the side of my fingers, (officially called a "monkey grab" by the physical therapist) because the tips of them wouldn't feel what was expected of them, I walked with flat feet, because my muscles wouldn't allow me to bend my foot and roll from my heel to my toes  (I would get passed by some 80 year old grandpa with a walker, I walked that slow)  and my memory wouldn't last from the kitchen to the livingroom in a 450 quare foot appartment...... Since that time, I learned another profession, because I realized that, no matter how much I improved my mobility, I would never again be able to type at 12000 keystrokes an hour, but I can code a website, and I walked 11 kilometers on a walk to collect money for cancer research in 2021.... One Kilometer for every year I was clear!

Don't keep your feelings and thoughts to yourself. If you have a signicant other, or anyone person that stands beside you in this fight, has your back when things get rough and stands in front of  you to protect you.... TALK TO THEM. They need to know what keeps you busy, worried or awake. They cannot help, if you don't tell them what's on your mind. Do not, ever, think you shield them by not talking to them. They hurt because you hurt, and not being able to fix things for you hurts them more than knowing what's bugging you!!! 

I didn't talk about things, because I didn't want to pile my crap on top of what  he was going thru by having to take care of me, and I'm still finding out things that bothered Mike at the time (and since) so try and find out what has them worried as well and if you can't deal with it yourself, try and get them to talk to someone about it, even informal, a good friend maybe or the spouse of someone who either has/had cancer or another illness that kept them from their regular routine.  I know in Iowa, there were groups that got together for people that were partners of cancer patients, but we didn't find out about them until we were pretty far into the treatments.  Mike never went, didn't realize he didn't have to do it alone, and I never thought of suggesting it might help him, because I was doing my own bit to hang on, not realizing how hard it was on him.  Maybe because I had been sorta-kinda sick for a lot longer than the actual cancer treatment, but he just took over and let me be. Pushed when I needed it, but in general, just made sure I knew what was going on and what was coming up in way of tests, checks and treatments. Anything else, I didn't have to worry about, because I knew he would take care of it. Is that normal? I do not know, it's just the way it went. But the one thing I learned is that you have to keep talking and asking questions. The better you communicate the better the help is that you're getting and the better "your" person will come out of the ordeal, as well. 

Check the websites for the Mayo clinic and other medical organizations. No, not to read stories of what could happen, or odds or other horrorstories..... PLEASE DO NOT DO THIS TO YOURSELF!!!! Instead, check for helpful information. Mike found website after website with tips about what to eat to minimize discomfort/damage from chemo and to ease the nausea, which foods would help get the chemicals out of my system the quickest, which foods would help the white blood count and so on.... (I may make a list on another page with some of these, and things I found will help, as they come to mind) The sites will also be helpful in finding organizations in your area, or at least places to look. In Hiawatha, for instance, there was a whole organization with volunteers that would drive people to and from treatments and follow up appointments and even physical therapy for as long as was needed, even after treatments were done, if they didn't have someone to drive them. They also had "retreats" for current and cleared cancer patients, just so you could talk to someone who had "been there", because, no matter how emphatic people are, unless you've had the treatments, had the anxiety of knowing that you may not make your next birthday, or had the realization that your body is turning on you, the conversations are lobsided. I can tell somebody that I'm scared of heights, but unless they're just as scared of heights to the same level I am, there's always a disconnect in the understanding of just HOW terrified I am when I'm 2 feet of the ground...... Cancer is no different. Most spouses/significant others/caregivers hurt because you hurt, and are upset by how things affect you and they feel helpless because there is no "fixing things" for them, but at the same time, they do not feel what you feel. This is not meant as a slam, it's just the way things are. However, you can minimize the disconnect by talking to them about it, and by getting their input as well on how things affect them. Like everything in life that is worth fighting for, if you have the option of doing it together, instead of seperate, it makes you stronger.

It's ok to be grumpy.  No, this is not a freebie to be a bear about what's going on, but it's not healthy for your recovery to always be "Up" to ease the way for people around you. There will be times, you just don't know if it's worth the hassle of getting out of bed, getting dressed and be nice. That's fine, that's the day you make a big pot of tea, drag out that book you wanted to read for the longest time, or put in that movie you haven't had time to watch in like forever and veg. Just remember not to do that more than one day at a time, it's not a trail you'll want to walk on for too long. You'll need your "happy" to deal with what you're doing... and what you're doing is fighting for another day, another anniversary, another holiday season, another fall color daytrip or whatever makes you want to get better.

 

Make lists....... lots of them. We weren't told of one of the side effects. Well, actually we weren't told of ANY of the side effects, other than the "nausea after chemo, possible hairloss, odd taste etc" You know, the ones that everybody and his uncle knows about. So when I started forgetting things, little stuff at first but to the point that I actively was worried that on top of cancer, I would have to deal with Dementia, the doctor told me...."Oh, that's normal with this type of chemo. It should go away after treatment stops!" I started making lists of things I needed to remember to ask Mike when he got home from work, things I thought needed doing, where the stuff was that Mike had put together for lunch, when Mike would be home again,..... After treatment, it didn't go away. I effectively lost almost 3 years of my life, with an occasional memory of the really heavy stuff, that just wouldn't stay buried. I found the notepads I used, the other day, and it's an eye-opening experience to look at those lists.... Scary of what I needed to write down so I could at least feel like I was living, not just surviving, but also as a glaring light as to what has been accomplished since...

Everything aside.... Even if it is not a side effect of your treatment, make those lists. You have a lot on your mind, and somethings just won't stick around long enough to act on, but are still important. If a question pops in your head to ask either your partner or you doctor..... WRITE IT DOWN. Make a pact with your partner, that you will go thru the list before bed, and decide what needs acting on, and what just has a simple answer that can have you sleep just a little less stressed.  Actionable points go on the calender, so when you have that same thought, it's right there, already taken care of and as far as questions for your doctor... by the time your next visit rolls around, all you have to do, is follow your list and get everything answered. One of us would either write the answers behind the questions, or I would leave the list with the doctor, and she would send the answers to Mike by email.  Don't assume it's "stupid" or "a waste of their time". If your doctor doesn't have time for your questions, find another doctor!! You need their support as much as their treatments, because the more you understand what's going on, the better you can sort thru the bullshit and take care of the important shit.

Without being a bear about it, make sure you get to do what you can do once you're on the mend. Your partner will be so used to "doing things" for you that it is just as hard for them to let go, as for you to start up!!! Sometimes, when I have a couple of really bad days,  Mike will go back to taking over things I have no problem doing, because at one point I couldn't do them. At first I swallowed hard and let him be, and than I realized that letting him do that, not only undermined my getting better, but made it harder for him to get back to his life..... So I waited until we were on one of our drives and talked to him about it. (We have our best conversations in the car, on our way to somewhere else, or just driving and enjoying) Since than, I let him know when he's taking over and he is learning to let me ask if I need help, and we're both happier about it. If you're stubborn like me, not wanting to ask for help with every little thing that's hard, helps in getting stronger, and I count that as a very welkcome side-effect :-)  Former patients are not the only ones needing to get back to their life from before treatment....... your partner does as well!

If you have a choice of what oncologist to visit, call the local cancer society. When we moved from Texas to Iowa, I called them, and although at first they wouldn't give a recommendation, when I told her that I really, really hated doctors because most of them didn't take time to explain the basics, but the doctor I had now, had met us at the hospital entrance, and personally  pushed my wheelchair to the room and tucked me into bed, while Mike parked the car, she gave me the name of a physician that would  fit me well. Not saying ALLl of these offices work that way, but if your initial physician who knows you and whom you hopefully trust, can't give you a  recommandation, it's worth a shot. It's an important part to getting the upperhand if you trust the person in charge of your recovery.

Don't stick with a docter that you don't click with on the important stuff, because of the hassle of finding another one... Unless it's superficial stuff, if you don't trust your caregiver to give the care you need to get thru this, get a second opnion. Talk to the cancer society in your area, talk to other people in your dingy and see what shakes loose on information. It may not be "just you" that doesn't jell with that physicion.... Some people need someone who tells them what's going to happen, without input or questions, some need a blow by blow of what's coming and some can go either way..... There are as many different ways to do this, as there are people on this journey. Be you, do what's needed for you to get where you need to go and take any help offered. 

Don't disregard recommendations given by your docter, but follow your instincts.... My cancer was mainly located in my spleen and had spread pretty much everywhere.  Obviously that' how Hodgkins Lymphoma works..... Because of my weight and the agressive chemo treatment, my white bloodcount was almost zero after about 3 doses. There was this shot the doc recommended that would possibly stimulate the bonemarrow into making white bloodcells, and she really really thought I should do this, so I wouldn't run as much risk of getting sick on top of things. 

Mike found it on line, and we read the risks and benefits together. Mike asked what I thought and my whole body locked up with fear, because one of the possible side effects, was a ruptured spleen...... My brain could not be persuaded that it COULD happen and not necessarily would happen, but my vision of all the cancer cells that were, in my mind at least, mainly locked up in my spleen, would be set free, and end me...... So Mike fought for me every time the doc suggested it, and I had explained why I didn't want to do it. She understood, and accepted my decision, but when the numbers got really low, she would ask if I would reconsider.  

The result of not taking the shot, was that I was not allowed outside during rain, wind or snow, (in Iowa, in the fall!) I was not to go where people were and as soon as I felt the least little bit off, to go to the emergency room and call the doc on the way there.....  So we found a way around the walls closing in on me. Every Sunday, Mike would bundle me up, help me into his worktruck and we would drive....... Sometimes we wouldn't go far, but we'd park and talk, sometimes all we did was drive, and sometimes it was a mix. The first stop would always be at Casey's and Mike would get a couple of maple glazed, cream filled donuts and a Banana Foster coffee for me and regular ones with black coffee for him and we'd stay out as long as I was able. Those are still the best memories! 

What I'm trying to say, is that your opinion and feelings count in accepting treatment. If it doesn't feel right, weigh the good and bad, and if in your mind the bad outweighs the possible benefits..... stick with what feels right.