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Primary, Secondary & Paediatric Lymphoedema Online & in the Community

Life with Lymphoedema & Pelvic Radiation Disease

Author: Val

Published: by Gaynor Leech, Founder of L-W-O

Hello, my name’s Val and I have Lymphoedema and Pelvic Radiation Damage.

Yes, I know, I sound like an addict, don’t I?  But that sentence pretty much sums me up as everything I do daily evolves around my care and maintenance on these two chronic conditions.  Of course, I’m lots of other things besides like the rest of you.  I enjoy art after gaining my Fine Art degree at the late age of 50 with the intention of using it to gain my master’s in art therapy before I realised how unreliable my physical problems made me. I love to cook, paint, write poetry, be politically and socially active through my illustrative work based on human rights which has been published in the strangest of places all over the world but most of all I love to be with people who are funny and entertaining whenever I can and I’m lucky enough know a good few of those!  I’ve recently taken up violin again and am still on page 7 of a starter book with a teacher but will persevere at least until page 10!  I’ve got 2 grown up children and a lovely supportive husband who I feel is the only one who knows me and goes through these bothersome obstructions in our life together with a smile on his face I might add, he is amazing.  I’m clumsy, I eat too much, vegetarian for many years with a longing to move over to the dark side (vegan) which I’ve failed at twice after managing both times for months! People say you’re either an animal or a person lover, I do both. And when I fail, I fail spectacularly, yes, no half measure for me!  So now you know a little of my background I’d like to share with you my experience of the last 30 years outlining my journey through cervical cancer and bi-lateral lower limb lymphoedema, now moving up into my body. I will try and keep it as brief as I can although I’m never a success on that one so please be patient.

I’d just celebrated my 30th birthday and sadly had parted from my partner taking my two young children 4 and 6 with me to begin again. Everything was a mess emotionally, as I’d just lost my sister about 6 months beforehand unexpectedly which I think prompted me to think about what I wanted from my life. Never a good idea when you’re hit with loss of any kind on hindsight. I had Cervical Screening  done a couple of years before my 30th birthday and had received a letter saying they’d found irregular cells but no further action for another year when another check would be due. I did phone to query that letter, but they told me not to worry as some smears show up irregular cells that are nothing to worry about like an infection of some kind. So, with that in mind I got on with a busy next 2 years, moving house and getting lost in busy family life. Two years on I’d begun spotting blood and went to see my GP who referred me to a gynaecologist at my local hospital. I had an inkling it might not be good as my appointment was arranged immediately and sure enough after a colposcopy examination where they take a tiny piece of tissue along with a photograph of your cervix I was told by my gynaecologist that I’d got ‘aggressive, invasive carcinoma’ which put plainly meant ’Cervical cancer’

My cancer wasn’t staged at or graded at that point but the treatment plan at the local cancer hospital in Manchester was ‘Brachytherapy’ internal radiotherapy as well as external radiotherapy.

There are different types of brachytherapy.  For example, there’s brachytherapy for women who have not had a hysterectomy and brachytherapy for those who have.

I was offered internal radiotherapy or brachytherapy as an inpatient for 24-48 hours but they discovered whilst I was in theatre it wasn’t possible due to the tumour being in the way so they referred me firstly for a radical hysterectomy so that it could be performed later after healing.   After surgery I completed 6 weeks external beam, the old type not the proton beam as this was back in 1990 before they made headway with the new technology. The proton beams these days is perfectly directed at the tumour and doesn’t harm any tissue or cells on the way through your body but the kind I had damaged everything in its path both good and bad. Followed by, the internal radiotherapy or brachytherapy.  The radiation treatment was in the pelvic area and I did ask if I’d have any side effects but was told no by the oncologist but yes by the radiotherapy team. Conflicting opinions didn’t make for a confident patient as I remember but soon learned that the radiotherapy team were right, it wasn’t too bad if you could put up with having to stay close to a toilet for a couple of hours each day but it was inconvenient as it meant I couldn’t pick up the children from school or feed them tea and put them to bed at times. These initial effects began around the third week of treatment and ended around the tenth. Tiredness was also prevalent, but I knew it would pass as the other physical symptoms appeared to be settling. This was what I refer to as my initial treatment response. 

As the early symptoms came and disappeared with treatment others started to appear around the 3rd and increasingly became more prevalent. Firstly, I began with cystitis which I learned after A&E admissions were ‘radiation cystitis’ which were painful and debilitating. I was advised by an A&E doctor to treat like an infection if it persisted with antibiotics as well as drinking over the counter potassium citrate to take the sting out of the sensation and it really helped.   I was 30, with a commode in my bedroom exhausted from lack of sleep jumping on and off this thing that in my mind was meant for the older generation. Then I learned how to deal with it and it eventually lessened in intensity as well as the number of occurrences, but I still have it today.

Then around the 3 months mark I noticed my whole left leg and foot was beginning to feel different feeling tight and it looked like it was swelling. It was and I mentioned it each time at my 2 or 3 monthly cancer hospital reviews. They said they’d keep an eye on it not offering me any real explanation. My leg continued to get bigger to the point I couldn’t get a man’s size 10 slipper on my left foot or a matching pair of shoes to fit and that mattered not just in looks but it was winter by then so it meant I was restricted in mobility and embarrassed. An epiphany ensued when my husband came home excited to show me what he’d read at work. I remember quite clearly his words ‘Val, I know what you’ve got!’ whilst thrusting a full-page article at me from the Guardian about a man who had lymphoedema in one leg. Hallelujah, I thought and took it to my next review to show my oncologist who responded by fluffing my hair obviously amused that I’d self-diagnosed. He also responded verbally ‘Yes Val, it is lymphoedema, we were hoping it would go away’ I shall not discuss the conversation we had after that as in hindsight it was disappointing as he ended by saying if I wanted to I could get an over the counter compression stocking that they use for flights as some patients believe work for them but ultimately there is no treatment. I was in shock and felt I needed to be proactive and find out all I could about this condition which I did. I found the hospital had set up a lymphedema clinic which wasn’t much more than a cupboard full of supplies under the stairs at the time and a small office with a couple of ladies running it but they did their best. Then I found my local hospice ‘St Ann’s’ and my life improved dramatically, I didn’t feel so alone, and I learned how to manage and maintain lymphoedema. 

Finding my local lymphoedema clinic was a lifeline because during the development of the condition I was struggling with new symptoms constantly rearing their heads which turned out to be radiation disease so being able to tackle just one of them like the lymphoedema by someone who offered a clear plan on how to move forward and gain back some control was uplifting and just what I needed as up to that point I’d felt like isolated like I was going crazy. I been experiencing sudden urgency bowel issues with bleeding, bladder issues, a pelvic lympho-cyst with pelvic chronic pain. The pain I experienced with the bowel flare ups were acute and unmanageable making me almost pass out. At the time I canvassed the possibility of IBS which I know now it isn’t after having spoken to a gastroenterologist who specialises in PRD (pelvic radiation disease) who explained the A&E referrals to bowel specialists were not looking in the right place as it was one of the specific side effect of pelvic radiotherapy damage. Everything together began to take its emotional and psychological toll on me.  I lost confidence in accepting invitations to social gatherings with friends or family. I hid my continued side effects from as many people as I could as I found them embarrassing and to be fair I tried to protect people from their embarrassment too as some symptoms bordered on taboo subjects that no one really wants to share or be a recipient of hearing about them.  Also, I was afraid that people who viewed me as being ‘cured’ after treatment ended would think I was ungrateful or making things up. I was a mess and alone with all these feelings not knowing what to do or who to talk to. 

 

My palliative care consultant who I was eventually referred to was amazing and acknowledged the damage and has since told me that she has veered towards helping people like me at a Macmillan conference where I was asked to speak if needed and so I know I am not alone on it anymore. I have the utmost respect for her honesty and professionalism with her practical attitude in helping me feel better.  The cancer hospital also asked me many years ago to speak to professional clinicians about side effects and treatment from a patient’s perspective and although I did feel quite let down in some ways at least they were making efforts to listen to people like me. I was not comfortable doing it, in fact I felt very nervous, but I kept thinking what if? What if my daughter, sister, friend developed what I had? How could things improve if we didn’t speak up in a proactive practical manner whilst trying hard not to be confrontational thinking about those with poor bedside manners. I was told ‘Don’t ask questions, just do as I advise as I’m here to save your life’. I felt we had to have some say in our treatment or our after treatment or at the very least feel acknowledged in our concerns. I know I’m not a medical person, but I do know how my body feels right? But when we go through treatment we are at our most vulnerable and sometimes unable to speak up, even me.  I even had a nurse follow me to my car on one occasion and thank me for making a doctor write my feedback in my notes as in her words ‘Your symptoms aren’t unusual or unheard of as he said, I hear them a lot so thank you for the ones that don’t say anything but want to’ It’s important to realise that many people don’t want to be seen as ‘complaining’ and if you are anything like me I was brought up to not question doctors. Now aged 60 I know better. I know I can do it without being rude of confrontational and that is important to me. If I ask something, I want to know the answer, the full answer. I realise not everyone does but if I ask then I want an answer. I think this ties in with the old point of view about cancer patients and not telling them everything unless put on the spot which I can’t disagree with entirely, not everyone is ready for the whole truth but I’m pleased to see hospital booklets and organisations on cancer subjects offering advice on treatment options and symptoms following treatment. Recently I pointed out to a helpful lymphoedema core group local to me that I’d not seen any booklets from them on lymphoedema as well as their booklet on ‘Late radiation side effects or complications’ which they very kindly produce for everyone’s benefit. On my trips to my local GP and hospitals I’d looked out for them on their stand and they were absent. Hopefully I’ll be able to try and arrange this being rectified in my area at least so that they’ll be included. I’ve found Macmillan to be very helpful when approached.  It was Macmillan who pointed me in the right direction to the PRD organisation after I’d phoned them feeling desperately ill and low with pain. They asked me ‘Have you heard of pelvic radiation damage Valerie?’ I answered saying I know I’ve got pelvic radiation damage, but I didn’t know about a disease. From there they gave me a link to Pelvic Radiation Disease Association and from that found a closed Facebook page for people to chat about their side effects Pelvic Radiation Disease Late Effects Worldwide which is not run by PRDA but by those who have symptoms. I’ve learned lots from them as I have from the worthwhile Lymphoedema Support Network  as well as the British Lymphology Society 

I have to mention my now husband who has been the clichéd ‘Rock’ He wasn’t there in the beginning and although he thought he knew what he was taking on he had a lot to get his head around, including how it affected our intimate lives which was devastating as symptoms got worse. It didn’t help when we mentioned intimacy difficulties during reviews where I was offered anything from a complete vaginal reconstruction to a tube of KY Jelly. The reconstruction was advised against due to the amount of surgery and the radical nature of further intervention causing me possible more problems so I felt stuck between a rock and a hard place on that one as you can imagine! 

And now I’m in a similar position as after my initial swelling of my left leg almost immediately after treatment followed by the right leg that developed 5 years later (which no one warned me of the possibility) I have new swelling travelling upwards into my torso and genital area. This has been a shock as the genital swelling only began about 3 years ago. While busy congratulating myself of self-maintenance trying my best to utilise the 4 cornerstones of treatment my groin began to swell. Hell, I could even open kitchen cupboard doors with it which my sisters found hilarious as I laughed along too making a joke of it. But it’s not, it’s not a joke when I’m lay in bed at night thinking how to best attack the next day asking myself questions. Did I overdo it with my 4 year old granddaughter, yesterday I was at the park, a gallery, making art, face painting and cooking so today I’m having what I call my ‘Frida Kahlo’ day which means painting or writing in bed. Frida Kahlo was an artist who had lots of physical stumbling blocks to her creativity and is a hero of mine so I try to do when I cannot physically mobilise myself either because of lymphoedema or pelvic radiation disease elements which try and stop me.

I didn’t cope very well early on and it’s not surprising when I look back but when after constantly presenting all my side effects to my cancer hospital in desperation for help instead of feeling like I’d been swept under the carpet. I challenged a doctor at one of my last reviews there after he asked me how I was and I knew his interest understandably was looking out for symptoms of cancer recurrence and not the question I’d asked him 5 years on eluding to my inability to continue with a ’normal’ intimate relationship with my husband. His and other responses there were always ‘That’s unusual’ but on this day I asked him to re-enter the room to show me where he’d written my concerns. He hadn’t, so I suggested maybe he hadn’t because perhaps no one was putting them down in my medical records? Then I asked to speak to a woman oncologist who said ‘Valerie, has no one ever explained to you that you’ve had 2 thirds of your vagina taken away and the third that is left has no elasticity due to the radiation treatment?’ Followed by, I see you weren’t given a vaginal applicator to keep your canal open so maybe that’s had an effect too. What vaginal applicator I asked, and she went on to explain how I’d been selected to be part of an experiment where I’d not been given one to see if it made a difference to others struggling. So, it was clear I was not alone in this. Somehow that felt shocking and comforting all at the same time. I thought I was imagining my symptoms and had wondered if my husband thought that too! They referred me to a wonderful palliative care consultant who got me through the roughest of years and then even helped me ditch all my meds when I felt I wanted to see if I could cope with the radiation pain. It took me a long time to withdraw but I am now relatively drug free in comparison and only take something when it feels like I cannot cope instead of the constant daily dosages administered through skin patches and the oral medication I’d had for years.  

In hindsight, I look back and think that the oncologists aren’t purposely deceitful, I try to think of them as hopeful. I wonder if they can even cope with the thought that they may have saved my life but replaced it with one of pain or discomfort instead. I truly did feel swept under the carpet feeling like felt an embarrassment or reminder of things gone wrong. I felt they didn’t know how to deal with people like me, but it appears things are improving on that scale and we are being taken very seriously and provided for with treatment plans these days. It’s still difficult to unearth the diagnosis at root level from both the patient’s side as well as the GP’s as one or multiple symptoms are not always immediately linked together so treated individually and not linked to both surgical and radiation treatment. But, as education of patients and clinicians improve on this topic to recognise the link referrals will hopefully become easier and is welcomed by people like me and those to come as we need help, now! On that subject I’ve recently been encouraged by current knowledge on complications on PRD & lymphoedema from a urologist.  Due to recent intensified genital swelling issues I was told my issues were too complex for him as a consultant having dual issues and agreed with my lymphoedema specialist that I needed to be referred to Professor Vaughan Keeley in Derby and I wait on that appointment now.  I must be sensible and acknowledge that it must be very difficult for GP’s when you present with differing side effects over a various timeline to link them together and therefore education on this subject is so vital. Lymphoedema and other radiation side effects can vary and take years to develop and no 2 people will experience the same symptoms or acuteness of effect. Whilst one person may lose their bowel or bladder another may be a little inconvenienced or have no symptom at all which is even better. People may experience any combination of side effects which affects them acutely or even mildly without too much upheaval to themselves or their family as yes it can affect your family, especially when they worry about you. I hope whoever is reading this is has the latter of the two options and I hope you consider my account as not a total waste of your time but an opportunity to soak up some information that just might resonate should you meet someone one day who talks or confides in you and mentions some of the things I’ve talked about here and then you’re perseverance in reading this wordy article might pay off and you can help them? Yes, that would be a positive result for me to know I’ve made a difference of any kind that helps!      

I know one thing; I can’t stop trying to raise awareness and I must keep moving which essential for me in so many ways as it is for the rest of us lymphies. Move it when you can or lose it is the motto I cling on to.  But I know through having these 2 very separate whilst conjoined chronic conditions that some days are beyond me and it’s on those days I allow some much needed rest and self-care in the  knowledge of what I need to do to get me through that day. We are all individuals, trying to learn and help support each other and I thank each day for the opportunity to do that. One day at a time! 

The idea for this article started after I attended a Living Well Beyond Cancer (LWBC) event and lymphoedema wasn’t mention as a side effect of radiotherapy treatment.  That evening through various discussions we lit up Twitter and the question that came up time and time again was “Did they mention Pelvic Radiation Disease?” The answer was no. This led to various heated discussions and after speaking to Val via support group and through private messages I asked could we co-author her story and she agreed.  However, when Val sent me her story it was so well written and researched, I decided that I would simply publish.  Val has been a member of L-W-O support group since January 2017, her sense of humour and insight has been invaluable to our community.

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