Lymphoedema Awareness Week 2018 Day 7 ~ Bal

LYMPHOEDEMA AWARENESS WEEK 4TH-10TH MARCH 2018

Loss
Yearning
Mourning
Pain
Help
Empathy
Damage
Endurance
Manage
Actively

Just when I thought the ‘Cancer’ Journey was over! Along comes Lymphoedema Arm!

I was diagnosed with breast cancer in August 2015 and had surgery, chemotherapy and radiotherapy. I was never prepared for this kind of continued upheaval in my life, had I not had enough of being butchered/poisoned/burnt/drugged and now more endurance with pain after 2 years of being diagnosed with secondary lymphoedema?!

Lymphatic Obstruction
This is a blockage in the lymphatic system, which consists of lymph nodes and vessels that help drain excess fluids from the human body’s tissues, these fluids can carry toxins and other human waste products to your lymph nodes before your internal system can eradicate them.

Lymph nodes are everywhere, very tiny, small as a ‘’baked bean’’, glands that can be found in different parts of the human body, i.e. neck, groin and armpits. Glands are vital for the immune system, because they provide red blood cells that help beat infections in the human body.

So therefore if there is a blockage, this then causes swelling (fluid in the arms and legs), which results in lymphoedema.

You can be born with primary lymphoedema, a secondary condition is a complication with cancer treatment i.e. a mastectomy is the most common cause because during surgery taking away lymph nodes under the arm(s) when a cancerous breast is removed, prohibits fluid drainage and swelling under the arm and/or whole arm(s) & hand(s) can occur.

This can also be caused by treatment such as radiotherapy (tumours and scar tissues (from radiation and surgical intervention causes blockage).

My symptoms started in November 2017, I had constant tingling in my arm/hands, at first I thought maybe I have picked up something heavy like shopping bags or even washing basket! My arm was swollen and cording started in arm.

I asked my oncologist and he flippantly said it was not his problem, ‘go and get the surgeon to check it out’ or your GP!

Surprisingly my GP did not have a clue (even though she is a medical professional).

Guys Hospital London could not help either as I was not in their catchment area or referral from my GP was rejected.

At my routine 6 month medical check-up, I casually mentioned to my surgeon about the pain in my arm/hands. He started measuring both my arms and confirmed my fears, breast care nurse referred me to a specialist. (Fortunately all my treatment was private).

My consultant surgeon and breast care nurse did some analysis, i.e. measured both arms and came to the conclusion that one was bigger than the other, I could have told them that without all this fuss. Breast care nurse was very helpful and she referred me straight away to a private consultant who specialised in lymphoedema. It was a 45 minute drive each way. I had 6 weekly sessions of lymphatic drainage massage, this was a machine that looked like an iron which was moved up and down my arm for 45 minutes continuously and then over my right chest wall and right side/back. She carried out a manual massage for 15 minutes, it was extremely exhausting and was painful and made me lightheaded so when I used to get home I had to rest for a few hours after each session in order to feel better.

Specialist provided me with tips/exercises for long term maintenance for my secondary lymphoedema.

In my experience, my GP did not know of any clinics and asked me to ask the consultant surgeon/breast care nurse. Surely as a medical professional she should be better equipped/knowledgeable to support me and perhaps others in my situation?

Please help existing/future patients have access to information about who to contact and raise awareness, support and a successful outcome for all.

Together we will be stronger and safer for tomorrow and ‘thrive’ for a better future.

Bal

#ResilienceInLymphoedema
#LAW2018
#LymphoedemaAwareness
#thebriccentre

Lymphoedema Awareness Week 2018 Day 6 ~ Carol

"My biggest frustration was my surgeon telling me that I can't have lymphoedema because they didn't do a full lymph node clearance....."

LYMPHOEDEMA AWARENESS WEEK 4TH-10TH MARCH 2018

I was diagnosed with breast cancer early July 2012, hormone sensitive in the left breast. I had a lumpectomy and sentinel node biopsy in late July 2012. Around three/four weeks after this I went to my GP as I had a golf ball size lump in my left armpit. My lovely GP wasn't entirely sure, but the new practice nurse had just joined from the healthy legs and lymphoedema team, so she was called in to have a look. She could see very mild lymphoedema in my left arm and a referral was made to the lymphoedema team.

As I was still due to have radiotherapy, they were unable to offer any support other than advising about manual massage/drainage (I forget the exact terminology). An appointment was set for December for me to go back but because they hadn't booked me a series of appointments, treatment didn't start until January 2013 - which included laser treatment and kinesio tape (I loved the pink tape!).

I had another visit in the following few years and eventually had a sleeve prescribed for me.

In September 2016, I was diagnosed with DCIS in my right breast, so I opted for a double mastectomy without reconstruction. I had some challenges with swelling across my chest area and the lymphoedema team supported me with laser treatment and kinesio tape. My right arm is okay, but we are looking at preventative treatment.

My biggest frustration was my surgeon telling me that I can't have lymphoedema because they didn't do a full lymph node clearance; and then when I had revision surgery last December, I ended up arguing with the anaesthetist who didn't accept that he couldn't put the anaesthesia through either arm, again because I hadn't had full node clearance - it was only when I said that my lymphoedema nurse would disagree with him that he accepted that he would have to do it in my foot, which is very painful.

Carol

#ResilienceInLymphoedema
#LAW2018
#LymphoedemaAwareness
#thebriccentre

Lymphoedema Awareness Week 2018 Day 6 ~ Serena

LYMPHOEDEMA AWARENESS WEEK 4TH-10TH MARCH 2018

I was diagnosed with Stage 3 Triple Negative Breast Cancer in March 2015. I had a lumpectomy at the end March/Early April but did not have clear margins so had a second operation to go back in and take a little more. I had sentinel nodes removed but no others. I had a course of chemo Fec(T) followed by 3 weeks of radio.

I went back to work full time towards the end of my radiotherapy. My arm and shoulder on my surgery side had always ached and I had to have physio on my shoulder as it was so tight, so I did not really think much of it at the time. However my breast started to swell every morning. It's really heavy and significantly larger than my left breast, it also really became really itchy.

I went to a follow-up up appointment where the consultant noticed the swelling too and I was then referred to a clinic where it was then confirmed that I had developed lymphoedema in my breast, and under my breast in my trunk sometimes, affecting my ribs under my breast. We tried kinesio taping however I reacted badly to the tape.

The nurses helped me to manually drain the fluid using massage and showed me how to do this myself. However I have found this to be very time consuming, especially in the morning when it affects me the most. I am not great in the mornings and take ages to come to by which time I am rushing off to work.

I have yet to find a bra which does not make it worse as every little seam leaves massive indentations in my breast. I know we are not supposed to wear underwired bras so I have ones without wires but have not found one without any seams as all my fluid collects at the bottom of the breast so even just the band irritates mine.

I find it very frustrating having lymphoedema but I do consider myself lucky compared to other people who are affected in their arms and hand.

Serena

#ResilienceInLymphoedema
#LAW2018
#LymphoedemaAwareness
#thebriccentre

Lymphoedema Awareness Week 2018 Day 6 ~ Anita

LYMPHOEDEMA AWARENESS WEEK 4TH-10TH MARCH 2018

It will be my 5 years cancer-versary soon - on the 27th of March. I was aged 43 when I was diagnosed with primary breast cancer, the day after my birthday. I had a lumpectomy and cancer was found in 3 lymph nodes also so I had the full 17 nodes took out of my left arm. A few weeks later I started 6 rounds of FEC chemotherapy-followed by 20 sessions of radiotherapy.

Soon after that, I noticed my arm was starting to be a problem. I had been doing the exercises that I had been taught throughout treatment with my arm to try to gain more movement but was in some pain with shooting pains, nerve damage and scar tissue forming. I noticed my arm was swelling, feeling heavy and very painful. The GP suspected lymphoedema and referred me to Sheffield Lymphoedema Clinic. There was a waiting list but I was soon offered an appointment. They assessed me, gave advice and information and measured me up for compression garments and a glove.

I also have oedema in my breast and have a lot of swelling and heaviness there so was given this ugly, uncomfortable compression bra. I go to the clinic 2 to 3 times a year they are brilliant and understand the condition more that GPs. It’s difficult to get appointments at the clinic as there is so much need in a big city.

I had 5 days of manual lymphatic drainage a few years back where I had to go each day for around an hour. The massage therapy helps to encourage lymph fluid to move away from where it’s collecting and diverts it across the heart into other nearby lymph nodes. This helped a lot. I felt less heavy and it really made a difference to my breast. I was taught to do this myself daily, but my memory is so bad that I forget how to do it correctly. I try to keep my arm moisturised and not too dry and I don’t use any perfumed products on my affected arm.

My arm really swells and is painful when I have done too much like lifting, heavy shopping, cleaning and wearing tight garments especially with all the layers I have been wearing lately with the cold weather. Sometimes, I have to sleep with my arm elevated and I must admit I rarely wear the compression sleeve as I find it so uncomfortable and restrictive in my job.

Over the last 2 to 3 years I have had many cellulitis infections (4 times last year) .The first time I had an infection I just noticed my arm was hot, with redness and more swollen, with a rash spreading but before this, I had flu like symptoms with a fever and felt shocking. I have also had an infection in my hand which took a few weeks to go and I’m now left with swelling constantly in my hand and this is difficult to treat. I have to always have a supply of 2 weeks worth of antibiotics at home and remember to take them anywhere I go, as without them I become very ill really quickly.

Last summer, I wore sun cream on my arm and I don’t know if it was a bit of sunburn or any perfume in the cream that may have started me off with cellulitis. I am waiting currently for some more manual lymphatic drainage treatment again but there is a big waiting list as there is only one therapist at the clinic that is qualified to do this.

I would love to know if there are any other treatments that are successful in managing the condition. I hate not being able to wear what I want and can’t wear anything long sleeved that is restrictive and dread wearing vest tops in the summer. I feel it is a real disability at times and I worry about being off work a lot due to my arm and also missing work to attend appointments relating to this condition. I also struggle at night to sleep and turning over in bed is a struggle with pain and swelling sometimes with my arm and breast.

My mum, who also had cancer 4 years before me, has lymphoedema but has never suffered with any pain from it although swollen, and has never had an infection. I have been advised that if I don’t get it under control soon, and if I continue to get infections, then I may have to go onto a low dose course of antibiotics permanently to prevent any infections.

Anita

#ResilienceInLymphoedema
#LAW2018
#LymphoedemaAwareness
#thebriccentre

International Women's Day 8th March 2018

We are celebrating International Women's Day #IWD2018💁‍♀️🎉‼️⚡️

Inspired by all the #IWD2018 activity, we want to highlight the dedicated efforts of Naz, who works tirelessly to raise awareness of, and support the psychological needs of women with primary and secondary breast cancer; to our wonderful ambassadors, Anita, Caroline, Jan and Jenny as well as all our amazing members who do so much to support other women.

Vicky and Tamsin

#ResilienceInAction

#IWD2018

Lymphoedema Awareness Week 2018 Day 5 ~ Lynn

LYMPHOEDEMA AWARENESS WEEK 4TH-10TH MARCH 2018 ~ LYNN

I was diagnosed with breast cancer two years ago this week, 6th March 2016. I had chemotherapy, a mastectomy then finally radiotherapy.

I knew nothing of lymphoedema until after my last chemotherapy when my watch became tight on my wrist. As I hadn’t had surgery yet, I thought it was just swelling due to the last chemo as they had trouble finding a vein, but when I asked the Breast Care Nurse she said it looks like lymphoedema, so my last chemotherapy caused this.

It took me a while to come to terms with this, a bit of a double edged sword - compared to breast cancer it’s not life threatening but I have it for ever and nothing can be done. I don’t like the sleeve but it’s a necessity. I was given a glove but don’t wear it as it’s too restrictive and my hand swelling has actually gone down quite a lot.

People don’t actually realise how it is a serious thing to live with and the consequences of not managing it properly. As a work colleague said ‘but you're alright now'. Yes, I am, apart from lymphoedema but I’m here and that’s what matters.

#ResilienceInLymphoedema
#LAW2018
#LymphoedemaAwareness
#thebriccentre

Lymphoedema Awareness Week 2018 Day 5 ~ Jane

LYMPHOEDEMA AWARENESS WEEK 4TH-10TH MARCH 2018 ~ JANE

I was diagnosed with breast cancer just after my 41st birthday.

I had chemotherapy first, then a mastectomy and lymph node clearance, then radiotherapy. I was known for having lots of side effects! My right arm started feeling strange after my surgery. It was very achy and if I used it to do anything at all the ache was just so strong.

I was referred to the lymphoedema clinic and was diagnosed then. The swelling has gone down a bit in time, I used to really notice how tight my tops were across my arm. I still wear my support bandage, occasionally I don't, but feel the pain later that evening. With the surgery effects too, I do have limited mobility in my arm and find this frustrating.

#ResilienceInLymphoedema
#LAW2018
#LymphoedemaAwareness
#thebriccentre