Living in the Dark

I too would like to know what it is like to have chemotherapy. All I have ever heard is about the Nausea and Vomiting or that you get hooked on medical MJ (which my state has).  I have been diagnosed with lymphocytosis and had my CT scan of chest and abdomen today and will have a bone marrow biopsy end of the week.  I was kind of surprised that nothing was said after the CT scan. Somehow I thought there would be results right away. The technician looked kind of puzzled when I asked when the results would be in  and could not give me an answer.   Now I have to wait three more days for the bone marrow biopsy.  Can anyone tell me how they cope with all that uncertainly.  My State does not have a Wellness Community and the Cancer Center I go to does not have any support groups (In fact they will be closing end of November).  All of the other support groups in town are for Breast Cancer.  Any feedback would be helpful.

[Aelens]

Hi there;


I see many patients who are going through this as well. The time when you are having al those tests and have to wait for results is very hard, and can cause massive anxiety. I cannot, and will not, comment on your symptons and/or test results, but I can perhaps help  a little by explainig what we do in our practice.

Everyone undergoing tests for a cancer diagnoses struggles. Unfortunatly tests take time. Some results may be available quickly whereas other test results take longer simply because of the processes required to obtain a result. Doctors often prefer to have a "complete picture" so they can explain the results in the correct context, and give you the best recommendation for your treament. We explain this to our patients.

Patients cope all in different ways, but all the patients I talk to tell me they preferred to wait untill all the result are available, and get the complete "picture" from their doctor.  Laboratory staff, people who take bloodsamples, or CT technicians cannot tell you when the result of a test will be available, because many test results need to interpreted together in the context of other results for a complete picture. The doctor who requested the tests should be able to tell you when results are ready to be discussed with you.

I would recommend you do contact the breast cancer support group, and explain your situation to them. Although you have no breastcancer, someone in that group might know of a person or a group that could help you, and advise you.

Chemotherapy is not easy. Your doctor and your nurse will explain you what chemotherapy you might require, what the side effects would be, and what they will do to help you with the side effects, and what you can and must do yourself to complete your chemotherapy, safely. To be able to explain the side effect of the chemotherapy, it is really nessecerry to know which chemo they might recommend you to have.

While you are waiting to learn what treatment you maybe need, now is the time to turn to your closest family and friends and share your concerns with them. Ask for someone to accompany you when the day comes to get the results of your tests from your doctor. They can help you ask questions and remember what was discussed. Take your time to write down all your questions now ! Take that list with you when you see your doctor, so you can get the answers you need.

Hang in  there !!

Lex.

[summerluvr]

Hi when you get diagnoaed with cancer it is really scary.  You don't know what to expect, anxious, scared etc. Your days get full of appointments, and seems like constatnt tests, and no one really telling you the results.

Once they finally diagnose you and decide on a treatment plan things become more routine.  For example, chemo is delivered in "cycles" so they tell you you will have 4 cycles, and each cycle is three weeks.  Usually you take multiple medications, and they have different schedules, so a calender is helpful to keep track.  (one drug twice a week IV, one drug orally everyday, anti nasusea meds every 12 hours etc)

It is not fun, but it becomes your life for the moment.  Waiting around for appointments, reslults, doctor visits is just part of the cancer "journey" (I  am not sure how I feel about this word, but it is the one people use frequently)

Make sure you ask the chemo daycare nurses where you can find help!  They are very knowledgable!  They often will put together information packs for you with pamphlets, contacts etc.  For example in Ontario, Cancer Ontario has a program of volunteer drivers to take you too and from chemo appointments.  There are resources out there, you just need to be conected with them.  There are also a lot of great web resources, support groups etc.

Bring someone with you whom you trust is my advice.  Going alone is much harder.

[summerluvr]

Oh yes and the chemo side effects vary greatly depending on the meds.  I didn't loose my hair until I had a stem cell transplant, but I did 4 cycles of chemo before that.  Biggest side effect was neuropathy (nerve pains) in my feet.