Back in May I joined this group to be able to share the process we're going through with the return of my wife's breast cancer after a 17-year hiatus. This time, in 2019 it had reached stage 4 before being discovered, and we are living with the challenges. The comments from members on my post then, and reading what others are going through, has helped me put things in perspective as we chart our own path through this process. I do appreciate more now that this is not a unique experience, and that everyone is dealing with some level of emotional and physical challenges as part of the journey.
After almost 2 years of oral chemo (Capecitabine) the blood tests and scans showed that the cancer was starting to spread again in multiple locations and the oncologist recommended moving to Paclitaxol which we had experience with during the first round in 2002. We agreed, and then had some real issues with getting that started. A combination of the cancer agency being very busy, a new computer system, and some seeming reluctance to get started caused a nearly 90-day delay in starting treatments. I finally became a little pushy and went up the chain at the agency and we managed to get schedules and treatments started. Quite frankly I think I unintentionally annoyed the oncologist who has ignored us over the past few weeks after that action, but I think my job is to get my wife's treatment organized and make sure we can get everything scheduled. Maybe reading too much into some of the interactions but as long as treatment is happening I can live with everyone not liking me.
The Taxol treatments are smaller doses than were used in 2002, with 3 weekly infusions followed by a week off. The first round of 3 infusions has just completed and she is handling the physical side well. I'm aware the effect is cumulative, but the level of fatigue is not too great and at this point there is no neuropathy as yet which was an issue back in 2002. Wouldn't it be good if that continued - we will see.
The big challenge is emotional, as a combination of a surge in family issues has caused some drama that we don't need. I suppose we're not immune because of cancer, but it all seems to pour on at once sometimes. And then, the hair-loss thing happened sooner than we were ready for, and yesterday I helped her remove what was left. Did you know that an average woman's hair weighs something like 2 ounces? We looked it up. That small bit of weight has so much meaning and this was a very tough day. But looking forward we are planning on being with friends and family with the vaccines in place and pandemic holding off for now, and looking for positive ways to deal with this ongoing process. So, if yesterday was the low then let's hope that the highs to come are well appreciated.
I see so many others here struggling with the day-to-day, and realize we are lucky in many ways. Thank you for this space to vent a bit, and share the emotions and facts we've gathered.
@DJC001 - I am so glad you came back and express what you are going through. That was by no means a rant , though they are certainly welcomed here as needed. I am sorry to hear that there was a delay in getting this new treatment started. Kudos to you for advocating for your wife. I understand not caring about making any friends. I have a family member who has been in hospital for 7 months ( not cancer ) and I promise you I have annoyed a lot of people while trying to get the basics of care for them. Oh well ha
It is true that cancer doesn't care about what else is going on in our worlds, or visa versa. Hopefully you can keep the other drama going on at bay in order to focus on what is important - and that certainly includes being with others who bring you joy and give you a respite from the day to day of cancer treatment. For both of you.
I too know all too well the emotions that come with having your partner shave off your thinning hair. I had a box of Kleenex and an adult beverage to help me through it. My hair was a part of my identity and was difficult to look in the mirror for quite some time. It was imperative for me to have a wig and yet I rarely used it. I did find a lot of great hats though that are meant for those who have experienced hair loss , as they cover more of the head. I used a company called www.headcovers.com but I am sure there are many out there now.
Keepin you both in my thoughts. She is very lucky to have you in her corner.
Thank you Lianne - much appreciated. I've passed on the headcovers website to my wife, and also found a website discussing the ice packs and will show her that as well. She is a crafts person by hobby, so has already begun making her own headcover. We have some wigs left from the first time, but like you she just didn't use them much.
We definitely have learned that you need to be your own advocate within the healthcare system but sometimes it would be nice if they got things working a little more effectively without that constant pushing that seems to be required. But until that happens we'll keep up the work required to get attention.
Thank you again for being one of the moderators here - this site does more good than you can imagine even if a member just reads and follows what others are experiencing. It is very much what I needed.
@DJC001 - you are so right about the advocacy. How wonderful would it be if things just ran well and patients were always treated with the utmost dignity. I recently wrote to our health authority with some of our most pressing issues and some of it is really low hanging fruit that doesn't take a system overhaul or the like to obtain.
How nice that your wife is making her own. I do not have that type of ability or creativity but I bet it helps with putting the focus somewhere other than the cancer treatments,, if only for a little bit.
Thank you for your kind words as well about the site.