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Updated: Sep 5, 2022




This product was shown for the first time at the 8th National Lymphoedema (virtual) Conference, presented by Sue Lawrence, Clinical Nurse Specialist within the topic ‘Management of Breast Oedema’. (Sponsored by Haddenham).


As a patient and patient advocate, I rarely get excited when manufacturers introduce a new compression garment. This is because as a breast cancer patient, I have felt that my type of breast cancer related lymphoedema (BCRL) has not been catered for.

My history

After a routine mammogram in 2010, I was diagnosed with a DCIS (ductal carcinoma in situ) - in simple terms this means the cancer was like grains of sand in the tissue, not a lump and wouldn’t have been found without a mammogram. I had the tissue removed via a wide local excision (WLE) also known as breast conserving surgery plus two sentinel nodes removed. This was followed by 15 days of radiotherapy treatment to mop up any cells that might remain.


My prognosis was good from the start, I was happy to receive treatment so quickly and even happier not to have had a mastectomy. As a direct result of radiotherapy treatment, I was diagnosed with lymphoedema a condition I had never heard of. To be exact I have breast and posterior chest wall lymphoedema. At that stage it never entered by head that I would spend the next four years searching for a bra that would fit properly or one I could feel comfortable wearing. Neither did I imagine that I would not be able to wear matching underwear again. To some that might seem trivial, after all most people will not see the underwear, you are wearing, but it does play a big part in body image and the feeling of wellbeing.

Breast Lymphoedema

As a society, we tend not to think about the things we cannot see. There are some very brave ladies who can talk about breast cancer and having a mastectomy and those of us who have had a WLE, talk about our breast cancer in general terms. However, we tend not to talk about the difficulties of controlling our breast lymphoedema or the difficulties that this brings in finding the correct bra. This attitude of “You are alive, aren’t you?” Sweeping statements like this only exasperate the feeling many women have over body image and walking around with what feels like a rugby ball attached to their chest.


So why did it take so long to buy a bra that was comfortable for me? Breast lymphoedema changes every day, you have good days and bad days, sometimes slight puffiness, swelling that is manageable and other days when you feel very puffy, and you are very swollen, and the swelling is a lot harder to manage. This is not just when get up in the morning but continues throughout the day. For example, breakfast time you could be a D cup by lunch time you could be a DD cup and by late afternoon a DDD and who knows what you could be by the end of the day. Skincare, movement, hydration, knowing which foods trigger more swelling all become part of your daily selfcare routine and ultimately your bra becomes your compression.


While I knew I needed compression I simply could not wear the type of bras that were available. Finding a bra with cotton linings that allow your skin to breathe, wide sides that would not allow the swelling to bulge over, straps that did not dig into your shoulders leaving deep indentations. I wanted something that would give me the compression I needed but was comfortable to wear and did not make me feel like I was in a strait jacket.





Innovation

Sitting happily watching the conference and suddenly on the screen the Comfiwave Breast Band was being presented. Initial thoughts “I want one”. That evening I shared the image of the band on our social media. Twitter lit up as did LinkedIn. Interest was phenomenal.

I was lucky enough to speak to Natalie Phillips at Haddenham who suggested if I wrote about the Comfiwave Breast Band she would send me one. Who is the Breast Band is aimed at?

  • For those with Lymphoedema extending into the breast/s and or lateral chest wall.

  • Aids softening of tissues as well as reduction of oedema.

  • Suitable immediately post-surgery, following breast augmentation or for those who have had breast conserving surgery such as lumpectomy.

  • Can be used over dressings for covering wounds, including fungating lesions

  • Useful in palliative care, where traditional compression is not suitable.

  • For use at night-time to aid comfortable sleep.

  • Can be used separately to or in combination with other types of compression bras and with Kinesiology taping applications for Lymphoedema.

VAT Relief

The Comfiwave Breast Band has been discussed across several of the social media support groups and while comments have been extremely favourable there has been some mutterings about the cost because at the point of writing this is not readily available on prescription. Having said that for those who have lymphoedema and some other conditions VAT relief is available. In addition to this at least one of L-W-O Community’s support group members has had this approved and ordered by her clinic. So, if you have breast lymphoedema do ask your clinic whether you are eligible.

My thoughts

I spoke to Natalie late on the Friday afternoon and was surprised to receive by Breast Band by the Saturday lunch time, extremely impressed with this service. I ordered the XL and initial thoughts I had ordered the wrong size, but I hadn’t. I waited until teatime when I just could not wait any longer. Because I have problems with my hands, I was concerned I wouldn’t be able to get the band on. I needn’t have worried it went on with ease. There is a nice, stitched feature on the back to show the right way up and distinguish from the front and back that does not interfere or protrude when you wear the band. I wore it for five hours. Concerned I might not be able to remove it properly hubby was on standby, but I need not have worried I removed the band with the same ease that it went on.

There were nice little ridges on my skin but not indentations to show the band was working and even after the first wear my skin felt softer. The next three days I wore the band for 12 hours each day. I did not feel as if I was wearing compression. There was a clear reduction in both front and side of my breast which was most evident when I put on my normal bra.


The next test would be to see if I could wear the band overnight and found that I could. In the UK we have recently been through some extreme high weather temperatures, and I found the band to be cool and comfortable. What I really liked was I felt no restriction of movement and was able to forget I was wearing the band. Best of all it did not slip, ride up or slide down and I could feel the difference when I took the band off.

Finally, the next test would be how it would wash. Initial wash it went on 30° in the washing machine and then was dried flat on a towel. You can tumble dry on a low heat. It came out of the washing machine as new, so absolutely thrilled.

Game Changer

The Comfiwave Breast Band is a game changer for people like me who have felt totally neglected in the past and I to now have compression that will improve the quality of my life.


In addition to this piece, I was asked to do a video for Haddenham which was replayed several times at the #BLS2021 Conference. This blog was described by BLS/Haddenham as a 'Power Report'


 
 
 


Talking to Busom Buddies, Nuneaton



I love talking to people, to be with people and I am always thrilled to be asked to give a talk to groups within my local community about lymphoedema. Movement in the UK is less restricted as many of us have been doubled vaccinated against Covid-19. While hand sanitising, mask wearing, and social distancing is still very much in place as most of us have been ‘safe at home’ for the last 18 months. On the 9th of June I ventured out to give a talk to Busom Buddies a friendly cancer support group attended by ladies who have all had a diagnosis of breast cancer. Some of the group sadly had also been diagnosed with secondary lymphoedema.


It was an exceptionally hot day and given the fact I had not ventured out much over the last 18 months there was some trepidation on my part. This was compounded by the fact that much of the information I usually take with me was very much out of date having sat in my wheelie (exhibition) case for the last 18 months. However, with this friendly group there was a sense that my presence was about telling my story, talking about lymphoedema and for the group to ask questions on how to look after their lymphoedema.


Selfcare is such an important part of lymphoedema and in an ideal world we would all have supported selfcare. Saddened by the fact that several of these ladies had not received any care whatsoever, one lady could not get a diagnosis from healthcare professionals for various reasons, and another lady had been diagnosed with lymphoedema when in my opinion she had lipoedema. I cannot diagnose and therefore, all I could do was suggest that she contact Lipoedema UK. The lack of support these ladies were experiencing was evident.


We discussed all aspects of living with lymphoedema from skin care, the importance of compression, and why movement is essential. Because it was such a hot day teas and coffee were replaced by diet coke. This provided a' giggle slap on the wrist' moment when I could tell them off and explained why fizzy drinks are not good for lymphoedema and the water I was drinking was preferable.


It is important for those of us who live with lymphoedema to drink more water

Don't be tempted to think the opposite - Lymph fluid is high in protein

To remove protein from your tissues you need water

Drinking water, means "protein-traffic" moves better around the lymph system


This was a lovely afternoon and I thank Corinne Morgan who organises the group for inviting me and it was lovely to catch up and talk face to face with Sue Sanders who is one of our moderators on Facebook.





Time for reflection

Why after 10 years since my diagnosis am I still surprised and annoyed to hear that these ladies received no information to the possibility of being diagnosed with lymphoedema? Why aren’t these ladies being given the support they need for their lymphoedema? Some of their stories beggar belief and there are more questions than answers:

  • Why are cancer patients still not being warned about the possibility of being diagnosed with lymphoedema?

  • Is it because healthcare professionals think we are only capable of dealing with the cancer diagnosis?

  • Why is there no lymphoedema long-term care plan in place for this lifelong condition?

We need the information - to make informed choices

We are supposed to be living in a society where patient-centred care is part of the treatment plan. Care plans should be conducted through a Holistic Needs Assessment (HNA) for a person-centred approach, and this should not only include the individuals needs but the information they need to live with lymphoedema. If we are to improve the quality of life for those diagnosed with lymphoedema then the patient must receive decent quality care, not be provided with the outdated and minimalistic information that is currently given.


One interesting question is emerging repeatedly not only at my talk with Busom Buddies but online in our social media “Could I be predisposed to lymphoedema”? I have my own views on this subject, and this is very much a question for the future.


Finally, my friend Maxine Tuffin from T & S Photography came along and took photographs as part of a photoshoot she was doing for me. Lots of nice photographs.

Thank you to Busom Buddies for having me if you live in the Nuneaton Area this friendly group would love to see you, they meet on the 2nd Wednesday of the month at:


Weddington Social Club

Weddington Road, CV10 0ER

Contact: Corinne Morgan

07557-960165


Busom Buddies donated £25.50 towards our funds which I am extremely grateful for. We receive no official funding please support L-W-O Community by making a yearly donation so that we can continue supporting those living with lymphoedema through our social media and websites.





 
 
 
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