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Lymph-what-oedema

Primary & Secondary Lymphoedema Online & in the Community

Guest Blog Barbara Brookes

My Story 

Following Breast Cancer Surgery, in 2003, I didn’t develop Lymphoedema until 8 months afterwards and when at first, ‘it reared its ugly head’ - it frightened the living day lights out of me!  I’d been to my Daughters the night before for a meal, with some family & close friends, having gone straight from work I’d travelled the motorway home and after having fed the cat, and followed my night time ritual etc, I retired to bed as I had work the following day.

I arose at my usual time 6.15, feeling a bit flu like, took my morning shower where I noted my left arm felt heavier and was a ‘little pink and blotchy!’ By the time I’d completed my morning dress ritual, prior to travelling the 15-mile drive to work, it became apparent I was feeling so poorly I wouldn’t make it to the car never mind the motorway! I was astounded by just how quickly I began to feel so -so ill.

'What the heck was going on now?'  I recall thinking to myself!

I had begun throwing up without even having eaten four spoons of my breakfast and my left arm was gaining a vibrant red map like appearance, by now I felt so so hot! I also began to shiver as if I’d been in a snow storm! I’d rang through to our main message centre at work leaving a message stating I was going to my GP as feeling very unwell!  I didn’t elaborate too much detail as wasn’t sure who’d intercept my message before Managers arrived (usually much later than any of our team). 

I’d tried to ring my Daughter in Birmingham, but she was by now about to complete the school run plus had to attend a hearing appointment for my youngest (at the time) Grandson (she had three boys all under 10) so I had left a message with her neighbour, and a good friend to me. I’d tried to close my eyes whilst on the sofa thinking ‘maybe if I have a little sleep it’ll pass! So so wrong was I’!  I began really shivering and naturally wanted to pull a throw up over myself but was so nauseated I had to keep going to the bathroom!

When Donna my eldest Daughter had been informed of my dilemma, she had in turn rang my Partner Jon (I had not yet consented to getting hitched, as we’d both married before) and Jon had taken a Management position by working / staying in London at his Mums weekdays and it would be a couple of hours before he could get up to the Midlands via busy morning rush hour traffic! - especially M25 & M40!!

I'd tried to ring for a GP appointment but 'as always'- the phone was constantly engaged!

As I was getting ‘a bit panicky, ‘I rang my Breast Cancer Team at Nuneaton George Elliot hospital where I’d undergone my initial surgery, and early morning ‘though it was’ I knew someone would be there on call duty, I was immediately put through to a Mrs Sheila Differ, (a Specialist Lymphoedema Sister in the Oncology Dept).

Sheila was very helpful, calm, kind and reassuring.

After I’d described to her my symptoms, Sheila explained to me it sounded like I had a ‘severe lymphatic infection namely - cellulitis under the heading of Lymphoedema! and that it didn’t always appear following Cancer surgery, but that I’d need antibiotics immediately, though as I was experiencing such bad nausea, quite likely ‘I’d need to go to hospital to have them intravenously! 

 

I had no concept of what this meant to be truthful!

I rang the GP again and this time got through - where it was suggested by receptionist I try to get to the surgery; however, the surgery was approx 2 -3 miles away and there were no buses from the village I then lived in! (Near Tamworth). I could not have driven with my swollen and now extremely painful arm! No offer of any transport or other means of it were suggested, from receptionist!

I was ready to call a taxi after I’d put down the phone to GP, but then I saw a neighbour through my window who was getting in her car, I opened my front door and called to her ‘were it possible to give her the money for petrol , in return for a lift to the surgery approx 3 miles away, however, she said  'No ‘sorry, I’m already late for work'  and drove off!

My arm was now heavier extremely swollen and painful and crimson red! I could barely stay focused, stand, nor raise my arm up. All this since rising at 6.15 am this morning! I was reeling with how poorly I felt, I’d had to half sit half lie on my sofa as I felt I was so feverish, though shivering I would pass out!

I felt so ill, so scared and alone I just could not believe how I’d deteriorated since rising from my bed this morning.  I drifted in and out of what must have been semi consciousness!

I glanced at the clock it was now 11.25 am.  My front door knocker went Jon stood there saying ‘I’m here! I have ‘never felt so so relieved to see someone in all my life! He’d received Donna’s message and driven over 240 odd miles to be at my side! He took one look at me and said ‘I’m taking you straight to A & E Dept at George Elliot Hospital! Meanwhile the phone went and Sheila Differ had rang my GP who was calling me to say ‘forget coming to the surgery, go straight to hospital ‘- I replied I am, my partner has arrived from London and he’s taking me!

I was admitted immediately by a Consultant Dr, and varied numbers of ‘student Doctors kept coming to the cubicle I was in, to see my arm and make notes, as I awaited a bed on a ward! They’d had the condition ‘touched upon lightly in their tutorials but had never actually had in depth details or seen examples of the serious conditions!  ‘I felt too awfully sick to concern myself; or resent me ‘feeling like the student’s afternoon Matinee show’.  By now it looked as if I’d had bright red paint thrown up my left arm or been burned!  They had ‘ever seen anything like it they whispered as they made their interpretations of ‘in medical terminology ‘what was happening to my arm!

A cannula had been rather amateurly attempted 3 times in my right wrist by a couple of the poor students, in order to later administer the antibiotics Inter-Venously!

Although they looked worried at the outcome, I feel sure ‘I beat them with my concerns as I watched my life blood drip all over the bedding’! They eventually resolved to fetching a Consultant ‘somewhat more experienced‘ to achieve the end result - ‘thank goodness!!’ At last I was admitted to the ward, kept on IV antibiotics and stayed there for three long days, when I was informed of the rules that would ‘dominate my life long and quite debilitating condition forth -with! ‘

(1) I would have to wear compression sleeve to reduce swelling once infection was ‘in hand’

(2) No injections including IV drips, or needles of any kind, no blood pressure cuffs, were ever to be used in that arm!

(3) I would need to take great care of the skin, keep it clean, supple - & prevent the risk of mozzy bites / or other insect bites! To avoid infection!

(4) As I had a pet cat be careful of scratches!

(5) Gardening - thorns, I would now have to wear gloves to protect my left hand from any risk of infection where the skin could be broken!

In fact, to generally to monitor every household chore and its risks on a daily basis for the rest of my days!

The ‘Good news’ I was informed by my Consultant was! - that if I promised to rest completely, also complete a ‘full 14-day course of antibiotics‘ or more if necessary following my release from my hospital bed, he would consider my discharge, ‘This plus a referral to Mrs Sheila Differ for compression sleeve fitting, plus regular appointments to ensure my condition ‘Lymphoedema’ was being monitored until it was felt I was confidently ‘self-managing it’.  I was due to be discharged on the Friday, saying I would return to work on the Monday! “Then if that is the case, said the Consultant, I shall not discharge you!

I explained that since losing time from work through Cancer surgery and follow up treatment, the previous year, my Managers had made life ‘doubly hellish’, they made it very clear my job was under potential threat, and I could have my employment Terminated! Although my youngest Daughter was now in her own accommodation I was very aware that my home was at risk!

I still had a mortgage to pay and this was so frightening!

The Consultant was extremely supportive and said ‘I shall write to your Managers making it very clear I am signing you off work for at least six working weeks’!  We shall see if they choose to challenge this ‘in Law ‘they would be acting ‘both foolishly as well as ‘illegally’.

I don’t wish to ‘bore you all with the stressful time I underwent on my return to work’ - where I had been  for over 26 years!, but I felt I had to turn ‘emotional summersaults on a daily basis, ‘ to ensure I stayed employed - with hindsight it was the worse period of my life, including having lost both parents as a child of 6 & 12 years of age! 

However, suffice to say I was extremely bullied, had to fight through an appeal against a written warning for a ‘secondary sick leave period’ - having explained that it should have been included in the period of sickness covering my Cancer treatment as Lymphoedema was as a ‘direct result of life saving Breast Cancer Surgery!

I ‘won my appeal, hands down through the keeping of ‘copious notes of meetings, telephone conversations, and exchanges of emails- in my daily diary!

I am a dyslexic person and suffered ‘bullying techniques - including placing me in locations which far exceeded my then current mileage / travelling time-  to my usual places of work! 

Closing down my post and putting me on a redeployment list where I had ‘only jobs offered at lower salary scales, and on permanent nights!  I was sent to work in an office library, with no windows no telephone no proper desk or chair! any equal pay posts I’d applied for was regularly turned down! Even though there were no real skills gaps! Or training offered to fill any identified gaps within new fields of employment!

They had waited & hoped for me to ‘have had enough to make me resign!

I refused and thought - If I beat Cancer, I’m not gonna let you beat me now!!!

Not conducive to help my Lymphoedema at all, as we all know Stress has a negative effect on our bodies and immune deficit!  Terrible stressful time I’ve practised well to choose to forget!

I eventually took a lower paid post to maintain my mortgage, of course this impacted on my pension outcome, as our pensions were then based on the final three years of our working life income!  I also lost my ‘car user allowance too ‘, so was also financially down trodden!   However, I managed to gain a promotion once in my new position for a year, and eventually I began feeling ‘more content with a new Management structure who valued & respected me, and so I slowly began to recover from the memories of the ‘previous oppressive atmosphere I’d been made to endure!’ 

I also believe in ‘Karma!!!

On a much happier note Jon and I had married, and I feel this was an uplifting and obviously joyful experience, which helped get me through the bad times. We spend a lot of time at work and need to feel as least stressed as possible whilst we are there; I completed a further 5 years before taking my retirement with Joy in 2011. Sadly fate ‘struck us another cruel blow’, as it was confirmed Jon was going to lose his job, at the same time and being profoundly deaf and disabled (we’re both deaf but I use two hearing aids) he struggled to secure further employment!  We had fortunately cleared our mortgage thank goodness and have survived the storm! 

I have managed my condition quite well over the past 15 or so years - having only been hospitalised twice since that first time mentioned above, making three in total!  One time was for two day’s stay on IV antibiotics, the first New Year’s Day night, we had moved town and house to where we now live back in 2005!

Whilst the last time being five days’ in 2014 in my local hospital bed, where the worst spread of infection / cellulitis came on within 3 hours one morning and no prior warning had occurred! (I’ve enclosed a photo of my left arm in this period of infection.

I had been long term member of a Lymphoedema support group founded by Sheila Differ, where I’d been a member for approx 7-8 years prior to later becoming chair - person lasting approx another 4 years! after the group moving the base we used for our meetings! 

Sadly, we had to eventually close our group July 2017 owing to losing attendance of members numbers for various reasons, and being unable to attract new members, due to the policies & politics of hospitals, staffing levels and advertising posters / leaflets being refused or withdrawn.  Not ‘all changes are geared towards progress. Unfortunately.

‘However, ‘In between time I had also joined Gaynor’s ‘on line support group L-W-O, ‘which as ‘I’m sure your all aware’ has grown and gone from strength to strength.   We have witnessed Gaynor and her small team working tirelessly to promote the awareness and seek better information both for patients and medical organisations!

We have seen Gaynor develop her group from just a handful of ‘local on-line people’-  to hundreds, of Global members, to initiate her first Annual Awareness Day, and as such a total success, that it went to a new level with her 2nd one!  Now looking forward to her 3rd one on the 16th May 2018! Which I’m sure will bring the quality and professional content yet again!  I have found this group to provide a ‘wealth of information, support, fun, answers as well as a real passion to ‘promote the education of what Lymphoedema is all about.

 ‘Not only to its members’ but also their family and friends who have a genuine interest’ and on a ‘need to know basis’. Ensuring they are equipped to share with all those affected so enabling them to receive an excellent service, as well as to spread the word making sure that the various Medical professions are bought up to date with all facts relevant to that service! 

I wish to say we’ll done Gaynor, and her team, and best wishes to continue to grow in passion and numbers!  ‘Who better to raise awareness than those of us with ‘first-hand experience ‘of the gaps that still sometimes exist today! ‘ ?  Who better to help ‘close those gaps?

We ‘are the real Teachers, and there is a saying that goes! -

‘When the student is ready, the Teacher will appear!!’ 

‘Together we’re Better’ 

And only by ‘raising awareness can we educate the students of today - towards a better and more knowledgeable ‘Tomorrow!

Kind Regards,

‘Love and strength to ‘all’

B xx

L-W-O © 1st May 2018

Unauthorised use and/or duplication of this material without express permission of L-W-O is strictly prohibited.

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