Lymphomaniac
or
Why I Tried to Hang on to My Lymph Nodes
I got a paper cut this week. Normally, for most people, this would be a very minor issue (if it's an issue at all!) They hurt but it's nothing serious.
Unless you've had all your lymph nodes removed from your left axilla (armpit) and the 'injury' is on your left forefinger. Like me. I had to go to to our long suffering GP with a paper cut...
I was looking at a map (I walked 50 miles with the LDWA (Long Distance Walkers Association) this weekend and was having a look at the route.) Such an easy, common occurrence... And EXACTLY why I didn't want to relinquish my lymph nodes without very good reason.
The lymph nodes (of which we all have many, at various strategic sites all over our bodies) filter the lymph, help to keep it moving and channel it away from our extremities. This support system which aids the blood with cleaning and healing wounds and infections, does not have a central pump like the heart but relies on us moving around to keep it moving around. But it needs clear channels and preferably a full set of healthy lymph nodes... Which is exactly what I DON'have for my left arm, breast and upper chest...
After any sort of injury, lymph is 'sent' by the body to the wound and if it doesn't have a way of escaping, it will pool in the area and cause swelling. Lymphoedema, a chronic and once present, incurable condition requiring specialist lymphatic massage and tight, surgical bandages, is the name given to this uncomfortable and inconvenient condition.
Being a reasonably persuasive person when I want to be (at least I get to use the acting training for something!), I managed to convince Mr Hadjiminas (the breast surgeon) , in the post scans, pre-op consultation, that it was worthwhile trying to hang on to as many of my lymph nodes as possible.
Reasons I gave for keeping my lymph nodes included: being clumsy and thus more vulnerable to injury and therefore at higher risk of Lymphoedema; being very active and thus more vulnerable etc.; I cited cooking as one of my main passions, that coupled with the 'clumsy' and cuts and burns potential was high risk; and an absolute refusal to compromise my lifestyle - the thought of wrapping myself in cotton wool for the rest of my (hopefully) long life... NO WAY!
I'd done some online research before the meeting and looked at some of the recent innovations in lymph node testing and removal. The one that caught my eye was the OSNA (one step nucleic acid test) system whereby a sample of the lymph nodes is tested during the operation (instead of being sent off to the lab and waiting a week for the results).
Unfortunately my short-term memory (never particularly reliable at the best of times) deserted me in the stress of the meeting, and I couldn't recall the name of the test. So I described it.
The consultation room was slightly overcrowded at that appointment. I was joined by my husband, Mike and accompanying Mr Hadjiminas were Dr Tasoulis (who we'd seen at the slightly pointless pre-scan meeting) and Vanessa, my breast care nurse. Mr H had been given the heads up that I wasn't going to let all my lymph nodes without a fight. There was a slightly awkward silence at the outset of the meeting before he asked me what I wanted to do. I told him. But without the benefit of the actual name of the new testing procedure, my layman's description was lost in translation and a small(ish) misunderstanding was initiated...
Mr H agreed to remove just a small sample of lymph nodes (including the one definitely positive LLN) using the sentinel lymph node test (where a coloured dye is injected into the area of the original tumour and then flows through the lymph highlighting the first (sentinel) node reached.
So. The plan was to have a lumpectomy (or wide local excision) to remove the Lump and a margin of cancer-free surrounding tissue, with a sentinel node biopsy. In order to minimise scaring and prevent a crater under the skin, in the space left by the Lump and its margins, Mr H proposed a cosmetic procedure usually undertaken to reduce and lift big, saggy boobs - not something I suffered from on either count (or so I thought!) and a small(ish) incision in my armpit to remove the LLN and its immediate neighbours. I agreed.
The operation was set for Thursday 10th July, exactly five weeks after the initial diagnosis. And only just over seven since I found the Lump.
The day before the procedure, I had to go in to the Breast Care department to have a dye injection which would show up the lymph nodes to be sampled. It was a blue colour and I was warned that I might have greenish wee for a few hours after the op...
I had to be at the hospital day ward for 7:30am the following morning and (as it would be my last chance for a while), I decided to walk the six and a half miles from Hanwell to Hammersmith. It was the perfect mode of transport for me and helped to settle my nerves and centre me (which is what walking always does for me).
After a bit of a kerfuffle over a guide wire issue. (If a tumour is deep within the breast or small and difficult to detect, the ultrasound unit insert a wire into the lump to guide the surgical team) Turned out, after waiting over an hour outside the breast ultrasound unit in a very fetching hospital gown, my Lump was so near the surface and clearly defined that a wire was unnecessary. Instead, feeling a little bit like a pirate treasure map, I returned to the ward with a great big, scruffy, black X to mark the spot.
I also signed up to take part in clinical trials for a new procedure. If successful it will help surgeons to identify all cancerous tissue during the initial operation thus preventing the need for further surgery. It involved dye. This time yellow...
Eventually after signing countless forms and having my left bosom decorated with further marks and arrows, I was called to the anteroom of the operating theatre to be put under by the rather jolly anaesthetist. After administering the anaesthetic, instead of asking me to count down from 10, he asked me to describe my perfect holiday. My reply? "Walking",
"Where?"
"Anywhe..."
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