It is not a coincidence that I haven’t blogged since January and that this post is about things I wish I knew about cancer but didn’t. Someone I loved dearly passed away mid-January from aggressive renal (kidney) cancer and it has not been in me to write publicly since then. But, when I read in today’s Globe and Mail about how a family didn’t know the dad had cancer until near the end because they didn’t follow-up on his biopsy results I knew today was the day to post something I’ve been adding to from time to time since January. My guess is that as I will no doubt become more knowledgeable I will update this post. Until then here is some stuff I’ve learned and wish I’d known earlier. I hope it helps.

Getting Organized:

1. Start to document what is happening. As my husband likes to point out, because of my German background I like order and subsequently also binders. But, figure out what is the best way for you to keep a lot of information organized and easy to access. You will not believe how much paperwork there is when someone gets sick. Binders work well for me. I like that I can add loose leaf paper and easily re-organize information if it later makes sense to do so- which it almost always does.

2. Keep a list of emergency number and contact information for all doctors involved in your case handy and near the front of your binder or book. Add new names as you meet new people.

3. Take your binder (or whatever system you develop) with you to every doctor’s visit. Have one section just for doctor’s visits. Date each entry and make notes of the meeting, who was present and if necessary who said what. Before your visit write down any questions you have leaving space for the answers below. This way as the doctor is giving you more new information and you are writing it down, it will still be easier to ensure the questions you came in with get answered before you leave.

4. If the illness is originally diagnosed in the hospital, start at that point to keep notes especially if medication is involved. Getting medication right can be a challenging process that can take months and may sometimes never really happen. Having information on what has been prescribed and how much and what worked and what didn’t and what may have caused a reaction and what subdued the reaction is all information you will want to have handy. To re-invent the wheel or to re-try something that hasn’t worked in one hospital when you are now in another hospital is hard on the body and completely unnecessary and avoidable. For example, there are many different drugs that can be used to bring down one’s blood pressure but if the most commonly prescribed drugs caused problems before when faced with the same problem you will want to be able to tell the doctors what worked last time and what definitely did not.

5. Make notes in your binder (system) each time you call a doctor’s office, book an appointment or are calling to follow-up on a test. It’s a great back-up tool when you’re trying to juggle doctor’s appointments, trips to the pharmacy and other responsibilities that are now suddenly yours. Also, should it happen that you have to call a doctor’s office three days in a row to get an answer to, what could be, a simple question you will want to let the person picking up the messages know that today is the third day you’ve called and no one has gotten back to you yet. When cancer comes to live in your home it is stressful enough without having your message misplaced. I suppose it goes without saying that if you haven’t heard back from the doctor’s office in a reasonable amount of time that it really is up to you to call again.

6. Keep receipts for parking, cab fares, out of town hotel costs, meals and uncovered medical expenses. Talk to an accountant to find out what may qualify as a possible deduction on next year’s taxes. Put these receipts in a separate envelope so that they do not get lost or misplaced.

Working with Doctors and Health Care Professionals

1. Take a buddy with you. If you have no significant other, enlist the help of a family member or a good friend to go with you to the doctors. Cancer is daunting, even when the prognosis is good. Having someone with you to take notes will help especially if you are still trying to digest one new piece of information and the doctor has moved onto the next or if a test result is not what you expected. There can be many twists and turns when determining what the best treatment plan ought to be. Visits can be tense and intense so having someone to debrief with and to support you during the visit is definitely worth doing.

2. Memorize the phrase “I am not sure what that means. Would you please explain it to me?” Doctors and sometimes nurses too have a vocabulary that you will likely not be familiar with. Like everyone else they sometimes forget that not everyone knows what they know. But like pretty much everyone else they will gladly explain when asked. Ask when you don’t know. Not knowing or being confused will stress you out. Avoid unnecessary stress.

3. If someone you know who has a medical background offers to help you sort through the information coming your way take them up on their offer. They may provide more insight or help you to ask questions you hadn’t thought of; plus if you let your doctors know you have a team of people supporting you it could be helpful.

4. If after going over your notes you still don’t really understand something and your support person hasn’t been able to help you find the answer you need to call the doctor’s nurse. I have found that nurses are remarkable persons; they are sometimes the angels that walk the earth. And I have never in the last 20 months met one who didn’t help when asked. I am most grateful for these individuals. Be kind to them- they deserve it.

5. Get copies of your test results. Every facility has a release of information office. There is usually a fee associated with getting copies of your test results but its money well spent. You may end up working with doctors in different facilities or specialties such as pain management. Having copies of your test results, whether its blood test results or biopsy results, can help the doctor seated across from you make a more informed decision which is always a good idea.

6. Take all your drugs with you. It is easier for the doctor to see what you are taking if you have the bottles with you. Remember to take them home again with you. Yes, I, being responsible for the medication have had to go back and pick it up after forgetting to re-pack it.

At Home

1. Start doing daily log forms. It’s a great way to make sure medication is taken properly and on time especially if you’ve gone from being healthy one day to taking 18-20 pills the next. It’s a huge adjustment so if you can make it easier do so. An excel work sheet is one solution. Having one column for the date and the times at which the medication is to be taken, followed by a list of the medications and their dose is a good place to start. I’ve also included columns on food being eaten, fluids drank (good for avoiding dehydration), symptoms, and comments. If you leave yourself some space at the bottom you can note how much exercise gets done, if the person has been able to work, or if the day has been a rough one. It makes sense that on days when you’ve got a doctor’s appointment stress levels will be high so making sure to take it easy the rest of the day and noting if that works is helpful. It is also a good way to mark what is going on in the long run because sometimes day to day progress can be slow but by looking back over a week or two you can get a better picture. This can be encouraging when some days simply aren’t.

2. When you are prescribed drugs it is always a good idea to ask if the dose being taken is considered low, standard or high. If the dose is high it is all the more important to discuss possible side effects with the doctor prescribing the drug and you will want to ask how your body will be monitored to ensure that the side effects are well managed and if possible avoided. This may involve regular blood testing or working with a doctor who is qualified to monitor and adjust medication as required. This will be especially important if it involves possible blood clots or potential liver, kidney or pancreas damage.

3. Toxicity: Some drugs may damage your organs. When these are the drugs you are required to take make sure enzyme levels are measured regularly. If possible avoid food and drinks that put an extra strain on these organs.

4. Steroids: I never knew that if one takes steroids it can cause blood sugar levels to rise to the point of being dangerous. If your doctor prescribes steroids, which is very likely if you have a biopsy as they control inflammation, make sure your blood is tested regularly (possibly weekly) for the time that you are on the steroids. I’ve been told it doesn’t always happen but it can. It’s never a bad idea to eliminate refined sugar products that can cause blood sugar fluctuations. There are many natural sweeteners such as stevia and agave on the market today that take hours to break down if you are not able to go without a bit of sweetness here and there.

5. Blood work: If regular blood work is required, especially if it is fasting blood work, request that your doctor set up a regular house call visit by your local medical testing lab. There is a fee associated with having this done. For example, in Waterloo Region where I live, Lifelabs charges $25 a house call and 5 days to process the request. Well worth not having to sit in a crowded waiting home (if there are seats) filled with people hacking, sneezing and wheezing, not to mention left behind germs.

Stay well and if not, well informed