In May 2012 I was treated for cancer that had spread to a lymph node in my left leg (groin). My swollen leg was the first sign something wasn't right and also the pain I had when walking. The pressure in my shin was ridiculous. There were lots of Drs telling me it could be DVT. Luckily my bowel surgeon and oncologist looked a bit closer and found the cancer. The swelling started to reduce six weeks into the chemotherapy and I was able to wear my clothes as I wanted, even my size 12 stuff.
Unfortunately since October 2012 I've noticed the swelling has got worse. I finally saw someone at the lymphoedema clinic a month ago. She measured my left leg and it was at the time 44% bigger than my right.
22 January I was taken into the local hospice for a break because the pain had got too much. The pain I suffer is in my lower back and almost wraps around my hips, the whole pelvis feels like it's being tortured. The hospice have had me on all sorts of medication to try and stop the pain. When I first got here I couldn't even sleep in my bed as I can't lay flat on my front or back. Laying on my side I can just about manage but only if I have loads of cushions to pad everything out.
The swelling in my left leg has gone down from below the knee mostly and as I type my left thigh is still as big as it usually is. The swelling also spreads to my waist and lower back meaning I can't wear any of my usual clothes.
I've been given a pair of compression tights to wear. I was told to wear them once I'd seen the clinic again as they'd go through how to wear them and they'd also look at massage technique so I can do it when required. Unfortunately I have to wait until next week for this appointment. I have worn the tights twice though, just to see what happens. They don't seem to help me, instead they cause my lower back and pelvic pain to be so bad I can't walk. I'm basically stuck in a hospice bedroom either sat in an armchair or a bed. If I go out it hurts to walk so much it stops me in my tracks and I sob. I've even had a woman stop her car and offer a lift to me because she could see the agony I was in.
I've had a bone scan and they came back pretty much normal:
'...The bone scan said there is no evidence of metastatic disease in the bones. The uptake in the cervical spine and SI joints would be consistent with minor degenerative change. I do not think that the uptake on the bone scan is sufficient to account for the patients pain.'
The MRI result came back:
'Comparison is made with the previous study of August 2012. This scan was performed under intravenous Propofol sedation by Dr F, Consultant Anaesthetic, without complication.
There is now more extensive high signal change in the pre-sacral space on the inversion recovery sequence but no progressive mass is identified, which would favour an inflammatory rather than a neoplastic process, and perhaps reflects previous radiation therapy. These changes are likely predominantly oedematous as there is no significant pathological enhancement. Furthermore, there is no oedema of the sacrum or pelvis to suggest direct infiltration by tumour.
No other pelvic mass or free fluid is demonstrated. There is significant oedema of the let thigh and of the buttock although the sacral oedema may reflect immobility rather than lymphatic infiltration or obstruction.
Conclusion: Extensive inflammatory reaction in the pre sacral space likely to reflect later effect of previous radiotherapy. There is no convincing evidence of tumour mass and no bone destruction or other significant abnormality in the pelvis.'
The radiotherapy they refer to in these two reports started 7 February 2011 and lasted 5 weeks, I had it everyday, but weekends off.
It's frustrating to think that two years down the line I am now experiencing real complications of radiotherapy to my pelvis. I am wondering though that the combined problem with radiotherapy and the oedema caused due to the lymph node no longer working means that I'm going to suffer extreme mobility issues. I can't walk on my own with a hand bag. I need morphine before I attempt a walk outside. I now can't take part in anything that involves standing. I need lifts everywhere and people to help me. I'm not used to asking for help. I have a boyfriend - we've been together nearly a year and I just want to get on with living. I don't want to be treated like an old lady. People suggest sticks, walking frames and wheelchairs. I can't even think about those. I'm only 29. I turn 30 in just over a month.
Does anyone have any tips or helpful hints on how to keep the swelling down? What's worked for some people?
This is my first post about this and I'm a bit all over the place. I'm sorry if I've missed any information out.
I'd just like to know people have somehow got their lives back after this?