Hello and welcome to my first blog post from the wintery island of Shetland. This is my story based on facts with some reflective poems.
What is Lymphoedema?
Firstly, in the United Kingdom Lymphoedema affects up to a quarter of a million people but globally the figure is in its millions. Lymphoedema occurs when the lymph nodes become blocked or are removed from the body. These lymph nodes are found under the arms, neck and groin areas. The lymphatics are often described as the plumbing system of the body and that its main job is to fight off infection in the body defence mechanism. I specifically have ‘Secondary Lymphoedema’. The ‘secondary’ part means it was not cancerous and it is either caused by an infection, injury, part of cancer treatment, inflammation of the limb, or a lack of limb movement.
I visualise my limb disability using the metaphor of ‘hydroponics’. Hydroponics is a water circulatory system used in botanicals to grow plants without soil. Since, it is essentially my ‘leg’ limb that is affected I just put the two together and called it ‘legoponics’. The reason why I did this is because I get fed up telling people what the word ‘Lymphoedema’ means. Their eyes glaze over or, it feels like it goes in one ear and quickly out the other. It isn’t in simple ‘layman or laywoman’ terms. It is medical jargon best kept for those that understand this type of terminology.
‘Leg-o-ponics’, at least gives an idea to what is wrong with the ‘water works’ in my leg. A visual ‘H2O’ hint
If others cannot still understand then at least I have tried my best to uncomplicate this word ‘Lymphoedema’.
In this legoponics blog I aim to write in a frank and open narrative. Importantly, I aim for this personal account to help others with secondary lymphoedema who may feel at times vulnerable, alone or struggling with this condition.
To ‘help inform and raise awareness’ from a personal perspective
I have source material mostly from my reflective journal entries from 2013, my artwork, photos and notes from a mobile app. Lastly, in some parts I have added my poems to help convey my emotions to help navigate the narrative.
It was Christmas day 2013 when I first noticed something was odd. This oddity and strangeness appeared when I was putting on my sheepskin lined winter boots. I was getting ready to drive and spend Christmas with my family. My whole right lower shin was completely snug into my knee length boot. However, the top of my left boot was loose by a one-centimetre concentric gap. I wasn’t immediately concerned as distracted by Christmas day preparations. I never viewed this as a major threat to my health or life as there was no pain; just a minor discomfort.
Unknown to me at the time this ‘strange’ and subtle change was the beginning of a whole new life path
Ironically the little labels stitched onto the sides of each boot said ‘Strange’. I loved wearing these boots as they were unique and fashionable for wintertime. They were leather with a specialist distressed look; almost a crackle effect. They looked good with black or blue denim jeans or skirts and they felt so cosy on a cold winters day. It took me two years to get around to wearing them. Still in their original box they were an expensive impulse buy. In total I got to wear them for three winter seasons and Christmas 2013 was sadly the last. Reluctantly in late 2014 I eventually sold my strange boots on eBay. It wasn’t the only shoe or boot grief that I had to succumb to; there was more to follow in its footsteps. No more heels, ankle or welly boots. In terms of clothing no more skinny jeans or anything that constricted my lower half of the body. Like any lymphie fashion the more elastic and stretch the better!
‘Skinny Black Jeans’ the other day in town I saw a stranger walk down da street she wore skinny black jeans and black leather boots it occurred to my memory my once narrow pins were clad in similar attire they looked exactly like hers a flash back to the past only thinking of errands to complete with no mind of any walking obstacles now I must look where I am walking! pavement slabs, concrete kerbs wet tarmac, and uneven tracks the everyday mundane underfoot it now holds my attention I don’t miss skinny jeans I have boot cuts jeans instead elastane stretched preferred or leggings with wide calf boots with knee length dresses or skirts I have moved on from skinny black jeans
I learn since my diagnosis in 2014 that ‘comfort’ comes before fashion. More importantly I cannot afford to impulse buy and let shoes live in their boxes anymore.
I feel every woman or man has at one time bought an item of clothing or footwear and thought, ‘yeah I can wear this somewhere, with something?’ ‘but!’ when is another thing
Fashion guilt purchases yes! I am guilty of these. Presently, everything I buy must count and take on a more practical ‘common-sense’ approach. It is a far removed from the glamour of catwalk fashionista narrative.
Presently, clothes shopping takes on a new meaning for me. In the past I could pop into a clothes shop and buy items without thinking of looking at the labels to see if it is elasticated or not. I must now carefully select items and then check each label ‘one by one’. I mentally question every item and ponder
‘What is the pe rcentage of elastane?’ or, ‘is it going to fit, stretch, reveal, hide or look strange on my leg or body?’
Due to living on a Scottish island with less shopping choices I prefer like many to buy online or visit the mainland. Sometimes I visit second-hand shops and still come across a bargain or items to accessorize. I love clothes shopping but now I must plan how long it takes to go from A to B in terms of travel planning. On a good day I get everything done. On a bad day I cancel: I can’t face the journey ahead of me. So far in 2018, most days are good.
From February to August the 1st of 2014 was the medical time scale of how long it took to fully understand what I had.
An unanswered question popped up in my head, perhaps my location didn’t help? living on a Scottish island? The fact was it wasn’t a recognisable health condition and left all medical staff on the island puzzled?
It was on the mainland Scotland that I eventually got a name to my health problem. I am grateful to all medical NHS staff on the island and the mainland who did their best to find a solution. However, in hindsight from what I have experience there needs to be more awareness of this ‘subtle and painless’ health condition.
One lady I met in 2015 didn’t get a diagnosis for over a decade she thought she just couldn’t lose weight in her teens.
There are a few stories like this found by reading personal accounts on the internet a ‘common delayed diagnosis’
I sometimes wonder if both my legs went large at the same time I wouldn’t straight away think it was a medical issue! Depending on your age group it could be easily dismissed as weight gain due to diet and lifestyle, or the menopause or the expected middle-aged spread. My account is from a female perspective only and I cannot comment on what it is like for men but there might be some similarities like diet and lifestyle causes.
In the whole of February 2014, the initial sign for me was having one ankle consistently more swollen than the other. Since that Christmas day warning in 2013 I never worried as it disappeared the next day. Even now each morning after sleeping the swelling goes down and the ankle is near normal looking again. It has a pattern like the oceans on earth: a low tide and a high tide. It has very subtle warning signs; just silent tidal movements.
Before I went to my doctor in the last week of February I had one dramatic and painful incident. It is maybe connected to my Lymphoedema from a walk I did on February the 1st 2014. This walk took place on a secluded beach in Northmavine, Shetland accompanied by my daughter. I remember it being a sunny and fresh day with a pale winter sun that set early afternoon. To catch the best of this winter sun was to hit the road and drive somewhere not too far rather sooner than later. My daughter and I walked slowly down to the beach.
It was a great way to clear away the cobwebs and start afresh for 2014 or so I thought! At the end of the walk both my daughter and I got our feet waterlogged. Both trainers and wellies alike were filled up with freezing seawater. We both got carried away running in and out of the surf and getting chills off the waves hitting the isolated beach again and again. Soon it was all over, and we were home, warm and dry while the winter sun set behind the black shadowed hills.
The following day after sunrise, I tried to get up out of bed but couldn’t move. An intense pain from my kidney area seared my whole being. I cried out for help. My daughter came running anxiously waiting for me to say something. The pain had its say first and I had no choice but stay still and listen. For twenty minutes intense hot and then cold stabbing pains took their turns to play its dark tango with my hypothalamus.
‘What is going on?!’, I screamed in my head. Eventually, a state of calm descended, and the deadly tango started to go at a more sedate pace
Eventually I rang a NHS 111 helpline and was told to go to see my doctor. Thankfully, since that morning I have not had any repeats. At the time I was just grateful my daughter was staying over that weekend and was there to help.
Strangely it wasn’t this painful one-off incident that prompted me to see my doctor; only the consistent swollen ankle. I felt something was very wrong when this swelling was not going way and there was no recent injury. I phoned up the doctor and got a routine appointment on that same day.
‘Process of Elimination’
The appointment became more urgent than routine when my doctor extended more time to investigate further. I was there for forty-five minutes when bloods were taken. I walked out with an urgent referral.
Journal entry 28th of February 2014 –Hospital investigation. Spent six hours in A&E. Saw doctors and nurses, which took a long time; a process of elimination. Last piece of investigation of the day was in the X-ray department for an ultrasound for my upper abdomen and pelvic area.
The following are questions I was asked: any trauma to leg area; any travel to exotic countries to rule out any insect bites; recent surgeries in the last few years. Family history of clots; contraceptive methods; IV drugs injected? I did have mandatory immunisations in late 2013.
Once all the above tests were completed and the results were normal, deep vein thrombosis was excluded. It concluded that a Lymph node biopsy was to be performed soon in the beginning of March. During the biopsy I was awake. I could feel the stitches. This made me glad that I could talk to the anaesthetist and request more painkillers.
I was discharged later in the day and I was waiting to get picked up outside the hospital. I was not in any state to drive thirty miles home. My friend took the wrong turning and drove over many speed bumps, we started giggling at the hilarity of it all. Each speed bump induced more giggles and so the amusement went on. Eventually I arrived home bump free.
On a later date of 18th of April 2014 my doctor was updated about my lymph node biopsy. In conclusion I had normal lymph nodes and x-ray on my back tested normal. In time after the operation I did feel my leg become a bit swollen. It was noted my leg measurements had a three-centimetre difference. The next hospital investigation was to do a MRI scan on my pelvic area to be conducted on the mainland. All travel arrangements were made, and I did a one-day journey and returned the same day.
It was into late June 2014 my MRI scan results showed no other signs of any abnormities. It was concluded there was no reason given to how or why I had lymphoedema. It was puzzling to my consultant. She seemed mystified as to why I had this problem. However, the next step was to give me the long-awaited answer.
It was a beautiful morning on the 1st of August 2014 I was told I had Secondary Lymphoedema: it was for the rest of my life
I remember after my first visit I had panicky feelings. It was all unknown and I did my own research. I read everything I could find online and started getting confused with the differences between Lymphoedema and Lipoedema. It took a while to really understand what Lymphoedema was and how to live with it.
I rang them up and relayed my first initial fears. They offer an excellent listening ear and were very helpful!
They gave me advice and information leaflets. The membership fees are low, and you can get informative magazines four times a year. I purchased a medical alert card from their online shop. It is useful for employment and if you are going into hospital.