Day +54: The Pitts #100DaysDIEP
The Rash has stopped spreading thanks to steroids. As well as scar healing, I was really worried about the risk of lymphedema. Treatment for breast cancer can compromise your lymph nodes. This means that fluid may not drain properly from your arm or breast and can result in lymphedema. Once you have mild lymphedema you’re at greater risk of more serious lymphedema that can cause cause irreversible tissue damage. It’s therefore important to avoid anything that can cause fluid build up, such as infection. I have a low but life-long risk of lymphedema (cos I had radiotherapy to the axilla and two sentinel nodes removed). Reducing my risk is now part of my everyday life: I massage twice a day; don’t hang bags on my right arm; wear a compression sleeve when exercising or flying; ensure I don’t get bitten or sunburnt there; only get a manicure at a place I trust; don’t do saunas; and only have blood tests and pressure taken from my left arm. I regularly have an L-Dex measurement of how much fluid is in my right arm and see a lymphedema therapist. You know, I take it seriously. I was understandably worried when The Rash spread to my chest, especially when I noticed that the tissue under my DIEP’d breast was stiffer and ‘pitting’ - it stayed indented after I pressed it, a bit like over-worked play-doh. It’s been drummed into me: if you notice anything that could indicate lymphedema, such as pitting, get it looked at ASAP. So I dropped an email to my specialist’s office. I completely appreciate how fortunate I am that I can do this, but a line in the response has really fucking irked me. I was told that swelling following surgery was to be expected and to “Just allow this swelling to settle in its own time. There is no magic treatment to speed up this process”. I am completely over the paternalistic and dismissive attitude some (not all!) medical professionals have to logical, rational and informed questions I make about my body and the treatment of it. Not to mention the patronising implication that I’m hanging my hopes on magic treatment.
I’m writing about it here as it isn’t the only dumbed-down dismissive response I’ve had from a medical professional, and I’m not the only one who’s experienced it. I’ve spoken to a number of people who feel the same: that they’re treated as alarmist for pointing out concerns, or seen as catastrophising because they’ve asked what warning signs to look out for in the treatment of own bodies. We’ve dealt with a cancer diagnosis and all the gruelling and intensive treatments that go with it. We know our bodies and have a right to ask questions about how they are treated, and what is happening to them as a result of that treatment. I’m not looking for magic, I’m looking to be heard, listened and responded to with information that addresses my concerns (even if they appear unfounded, although in this case I was right to be concerned). My post-surgery swelling has been exacerbated by The Rash and steroids: it’s been made worse. If it goes on for longer than a month it’s a worry. The oedema can be (non-magically) treated by my lymph therapist with massage and compression garments. The compression is made up of soft foam chips in-between two pieces of fabric that ‘knead’ the tissue and promote drainage. This photo shows the indents (pitting) even this soft material causes after being worn for an hour.