Following is a narrative written by my wife on Facebook about her recent experience with breast cancer surgery. We now have to wait for her to heal and then find out what follow-up treatment will be required. Facebook friends have been very supportive. Their comments are much appreciated.
”I had breast cancer 35 years ago last month and underwent a lumpectomy and a total axillary lymphadenectomy on my left side. I was living in Saskatoon Saskatchewan at the time and went to Toronto for surgery and radiation since the prescribed treatment from a very uncaring surgeon was a total mastectomy. I have never thought of or referred to myself as a survivor. As some stranger said to me a week ago Thursday – Well, you had a longer life and raised your children. I am still in shock that someone, whom I have never met and who I will never see again said something so totally thoughtless.
About 3 months ago I learned that I had breast cancer again – this time on my right side. It has been an uphill battle with the Ontario Health Care System – I have not experienced this level of frustration in any other Province – but a week ago today I had a modified mastectomy and a sentinel lymph node removal. Exceptionally good and caring surgeon and an excellent experience at Joe Brant hospital in Burlington. It was to be day surgery – yes that is what they do these days to avoid infection – but I was kept over night as I had some breathing difficulties. Released with no dressings but simply Steri-strips at both incision sites. I was showering 48 hours after release and wearing a loose bra the same day. Tylenol took care of any discomfort for 3 days. I feel very fortunate.
Because I have lymphedema in my left arm and torso, all vitals and treatment had to be done on my right side. One young nurse termed me as paranoid which gave me the opportunity to explain the dangers involved in taking blood pressure and using needles on the affected side. She checked with her charge nurse and came back to apologise. Hopefully the next person with lymphedema that she treats will have understanding and not scorn.
I had a manual lymphatic drainage treatment on the Friday before the surgery and one on the Thursday after. There was no swelling at the site. I will have another in two weeks. These cost $100 per treatment and are not covered by our health care but are covered only to $450 a year by my supplemental coverage. Because the swelling in my abdomen presses on my diaphragm, I have trouble breathing but this is still not covered. The useless antibiotics that my family doctor keeps prescribing for this is covered. Go figure. All of the tests for lymphedema are covered but none of the treatment is. 75% of the cost of the custom sleeves for my arm – they cost $400 each vs $120 off the rack which are not covered – are covered by a special fund but none of the compression garments – at $190 each – for my torso are covered.
You would think that if you develop a condition from surgery for cancer that the cost of treatment would be covered. There are no medications or corrective surgeries for lymphedema. It is a life long and life altering condition. Sometimes I can’t put on my socks or tie my shoes because I cannot bend in the middle. Clothes with long sleeves have to be carefully purchased and form fitting ones are out of the question. The affected regions must be kept out of the sun (makes going to the beach problematic) and protected from insect bites and cuts. No more manicures in case of infection. Can’t walk a golf course any more because of the uneven ground and walking long distances is not going to happen because of shortness of breath.
I do not see the surgeon until November 7 to find out the follow-on treatment. I am afraid of radiation since that damages the lymph nodes and so am very concerned about developing lymphedema in my right side. I don’t know how I would manage with my full upper body being affected. Others do so I would have to learn to manage.
I am grateful for a very understanding husband who has cooked and cleaned this past week, who has put my compression sleeves on for me because I cannot put pressure or weight on my right side yet, who always puts on my socks and ties my shoes when I can’t, and who is undoing and doing up my bra after my showers. He even switched sides on our bed to allow me to use my left side to maneuver in and out.
I would like to say to that thoughtless person – I am not finished with my life yet. It may not be as easy to live as yours, but I expect a few more years to enjoy the world and my family!”
I will write more in the coming days about follow up treatment that may be required post surgery and about coping with and managing the effects of lymphedema which is a major concern on its own. Unfortunately the medical profession knows little about lymphedema and how to treat it.