Sunday, 6 December 2015

What is lymphoedema?

What can I do?

Lymphoedema is the build-up of fluid in soft body tissues when the lymph system is damaged or blocked.
Lymphoedema occurs when the lymph system is damaged or blocked. Fluid builds up in soft body tissues and causes swelling.  Lymphoedema usually affects an arm or leg, but it can also affect other parts of the body. Lymphoedema can cause long-term physical, psychological, and social problems for patients.





    


The lymph system is a network of lymph vessels, tissues, and organs that carry 
lymph throughout the body.

The parts of the lymph system that play a direct part in lymphoedema include the following


v Lymph:A clear fluid that contains lymphocytes (white blood cells) that fight infection and the growth of tumors. Lymph also contains plasma, the watery part 
of the blood that carries the blood cells.
v  Lymph vessels: A network of thin tubes that helps lymph flow through the body and returns it to the bloodstream.





v  Lymph nodes: Small, bean-shaped structures that filter lymph and store white blood cells that help fight infection and disease. Lymph nodes are located along the network of lymph vessels found throughout the body. Clusters of lymph 
nodes are found in the underarm, pelvis, neck, abdomen, and groin.




The recommended treatment for lymphoedema is a treatment plan called complex decongestive therapy (CDT). It is also known as decongestive lymphatic therapy 
(DLT).

CDT is not a cure for lymphoedema, but it can help control the symptoms of swelling and 

pain. Although CDT takes time and effort, it can be used to effectively control your 
lymphoedema.

Complex decongestive therapy (CDT)
There are four components to CDT treatment:
·         Manual lymphatic drainage (MLD) is a specialised massage technique designed to stimulate the flow of fluid and reduce swelling.
·         Multilayer lymphoedema bandaging (MLLB) uses bandages and compression garments to move fluid out of the affected limb.
·         Remedial exercises designed to activate muscles in the limb to improve lymph drainage. 
·         Skin care is required to prevent infection.
Each of these treatments is described in more detail below.

CDT begins with an intensive phase of therapy, during which you may receive daily 
treatment for up to six weeks. This is followed by the second phase, known as the maintenance phase. During the maintenance phase, you will be encouraged to take over 
your own care using simple lymph drainage techniques (MLD administered by either 
yourself or a carer) and exercise while wearing compression garments.
You will then have regular six-monthly review meetings to check how your treatment is progressing.




1. Manual lymphatic drainage (MLD)
During manual lymphatic drainage (MLD), your lymphoedema therapist will use special massage techniques to move fluid from the swollen areas into working lymph nodes where it can be drained.

It is important you receive MLD from a trained lymphoedema therapist and not a regular masseur. This is because the technique requires a detailed knowledge of the lymphatic system to be performed correctly.
Your lymphoedema therapist will also teach you a range of massage techniques you can use during the maintenance phase.
MLD may not be suitable if you have certain health conditions. For example:
·         current or suspected deep vein thrombosis (DVT)
·         a blood clot in one of the deep veins in the body
·         swelling in your legs due to heart failure
·         cancer in the affected area
2. Multilayer lymphoedema bandaging (MLLB)

Unlike the blood circulation system, there is no central pump, such as the heart, to move fluid around the lymphatic system. Instead, the lymphatic system uses the massaging effect of the muscles surrounding the lymph vessels and nodes to move the fluid.
The aim of multilayer lymphoedema bandaging (MLLB) is to support the muscles during 
exercise and encourage them to move fluid out of the affected limb. MLLB is often used after a session of MLD to prevent fluid accumulating in the limb again.
You will be taught how to correctly apply your own bandages and compression garments so you can continue to use MLLB during the maintenance period.


3. Remedial exercises
Remedial exercises are designed to strengthen muscles involved in lymph drainage. You will be given an exercise plan tailored to your requirements and ability.
This exercise helps to prevent or reduce temporary swelling in the arm. Take a small rubber ball or similar object in the palm of your hand and make a fist around the ball, squeeze gently and relax. The ball should be firm enough to have to exert some pressure but soft enough to give a little when squeezed.


4. Skin care



Taking good care of your skin is important because it will reduce your risk of developing an infection, such as cellulitis. You should be given a daily routine to follow, where you are required to meticulously clean your skin and check for any cuts, abrasions or signs of infection.



Sunday, 29 November 2015

All is Well That Ends Well!

Quietly finishing a sandwich, Mandy turns to look at me in response to something I have said  (what that was, don't ask, It's not important, and I don't recall it at all), and I think "am I seeing this right?" 
So I look again. Mandy's eye is a mass of blood. I tell her that her eye is, and I use the wrong phrase, "bloodshot" "oh" so she says, "  it will be alright" I tell her no, it is really bloodshot, and she continues to tell me to stop worrying, it is fine. I tell her to look in the mirror, but she tells me to stop worrying. No, I tell her, " you are not getting this" " it is really bad" " it will be fine" she says. So I get a mirror and make her look. 
Then she understands that she needs to take medical advice. Medical helpline leads to another medical helpline leads to A and E leads to inspection by opthamologist. 


The main thing is that he could see nothing behind the eye of concern, although he detected early stage cataracts, not so good, but manageable I guess.  Perhaps this is another chemo affect, who knows? 
 We are now waiting for the results of blood analysis which should be available next week. 
In the meantime the Dr whilst looking into Mandy's eyes is going Wow, wow, I have never seen this before. Wow, there are really crystals in your eye, they are shining like Swarovski crystals" and his face is beaming all over.  "  Yes" Mandy says, " they are writing this up and have already taken photos to put into medical journals"  He calls the nurse to have a quick look because she will probably never get a chance to see this rare condition again. 
I doubt that Mandy will be able to get them extracted to be made into a necklace, but at least it gave her something to smile about. Still as she always says, she does not want to be rare, she wants to be normal, but it is entertaining to see the excitement on eye doctors faces when they look into her eyes!

Friday, 6 November 2015

It's not over yet!

I'm happy to know that the chemo is now finished but treatment is not over yet! Ten days ago i started the next phase of treatment, hormone therapy, anastrozole  One tablet every day for the next few years, at the moment the number of years I should take it is not certain. I was supposed to take tamoxifen for ten years the first time round but after six years I developed a very rare side effect which effected my eyes by where the tamoxifen crystallised on my retina! So they advised me to stop taking it. By this time I had already developed a lump and the cancer was back! Hopefully with the surgery, the chemo and now the hormone therapy underway everything should be in place to keep this awful disease away for good! 

Monday, 19 October 2015

A shower of flowers





How lovely to have been thought of by so many caring friends and family during my time of recovery









Post chemo cycle six and feeling crap!

Each of my cycles of chemotherapy have been scheduled at three weekly intervals.

Why you have chemotherapy in cycles

All the treatment you are offered is based on years of research. The combination of drugs your doctor suggests will be the best of all those tested. The drugs aim to kill the cancer cells while causing as little harm as possible to normal, healthy cells. You have chemotherapy as a course of treatments over a few months because  
  • It allows the chemotherapy to kill more cancer cells
  • The rest between treatments allows your body to recover from any side effects
At any one time, some of the cancer cells will be resting. Chemotherapy only attacks cells that are in the process of splitting into two (dividing). So resting cells will not be killed. Some of the cancer cells that were resting during your first treatment will be dividing by the time your second comes around and so they will be killed off. Normal cells usually repair the damage from chemotherapy more effectively than cancer cells, so damage to cancer cells should progressively build up without causing permanent damage to normal cells. There is more about this in the section about how chemotherapy works.

The effects of chemotherapy are cumulative and I would say there has been a noticeable drop in my energy levels particularly since chemo number three although between the rest periods I have felt energy levels return although more slowly with each cycle. After number five I haven't felt that I've had chance to regain strength, energy or fitness before they administered number six!

Six days post chemo number six and I have probably felt at my worst throuout the whole treatment with ongoing side effects becoming much more severe. The weekend has left me completely drained with a lack of energy to the extreme of having great difficulty in even claiming the stairs to bed and having to resort to getting up half way and having to continue on hands and knees! 

Conversation and the ability to understand and make decisions can feel like a quest in itself including following the thread of a conversation, and retrieving words. A difficulty multitasking, comprehending what i've just read and with simple tasks becoming increasingly more difficult to concentrate on!

The last four nights have been nights of sleep deprivation, spending the last two nights mostly in the bathroom sat upon the toilet going from constipation to diarrhoea! Yes, sorry, not what you may want to be reading but these are the facts and I want to be honest in telling it how it really is, not very pleasant I know and I can tell you it hasn't been pleasant for me either!

I had an appointment today at the lymphoedema clinic at St. James hospital and first thing this morning with the way I felt honestly didn't think I would be able to make it but with determination and the fantastic support of my wonderful, amazing husband I was, with a great effort able to attend!

Mystery flowers solved

'm happy to say the mystery of the anonymous delivery of this beautiful bouquet of flowers has now been solved. The flowers were sent by my mother and father in law, Eileen & Barry and I have now been able to thank them personally! 

What's more I have also learned that the purchase of this particular bouquet of flowers from M&S means that a percentage of the price is donated to breast cancer too!

A beautiful bouquet. Thank you Eileen & Barry x x




Saturday, 17 October 2015

The Ribbon




This is Charlotte Halley. Maybe an unfamiliar face but she is the person who introduced the ribbon into the "fight" (not my favourite term) against cancer, but not in the way you might think. For her, the ribbon was a symbol of her protest AGAINST  The National Cancer Institute in America because she had found out that less than 5% of its massive budget was actually used for the benefit of those with cancer. Her ribbon was peach and she held on to it. She would not allow it to be used as a commercial promotion, so lawyers advised a change of colour. And the colour chosen was pink. But let us never forget Charlotte and her protest still valid today. 

I would like to see legislation passed making it illegal to raise funds for charity without prominently displaying the number of pennies that goes to the end user/ the cause, for every pound paid. 

Thursday, 15 October 2015

Beautiful gifts of flowers

How lovely to be thought of with beautiful gifts of flowers! After finishing a gruelling four month regime of chemotherapy.

Firstly from my breast sister Sharon I have received a card from her arriving a day or two before each of my chemos, a fantastic surprise weekend vist travelling all the way up from Wiltshire before having chemo number six and then a further surprise of a delivery of flowers timed perfectly the day after completing chemo along with a card which she had left to be handed to me on her behalf.


Flowers from Sharon

My next flowers were hand delivered this morning from a friend and colleague have had the pleasure of many times, since soon after my operation back in May! Donna has been a great friend with regular visits of support. 
Flowers from Donna

Now onto my mystery flowers, a beautiful bouquet which I was thrilled to take delivery of also today. Unfortunately there was no details of the sender, such a shame as I would really like to thank them personally but have no idea who it could be! Perhaps they may see this blog and realise they had left the card that came with the flowers blank! Whoever you are I'd really like to say thank you they are beautiful as you may be able to see! 

Mystery flowers
Who could it be?



One dozen


I'm happy to say that on Tuesday 13th October I completed yet another course of chemotherapy! Twelve rounds in six years! 2009 was my first regime which began in January and consisted of six cycles three weekly of EC90 that was a combination of two drugs ( Epirubicin & cyclophosphamide ) 

My second regime of chemotherapy  after my reaccurrance this year which I began in June 2015 consisted of six cycles of Docetaxel

Cycle  six of Docetaxel
After achieving my five year mark and celebrating, then further going on to being six years cancer free and beginning to become more confident about putting this all behind me it was yet another wake up call to not becoming complacent about this awful disease!

I really don't want to have to go through this all again and am hoping and praying that from here on I will stay cancer free! Wouldn't that be great! So let's hope this is it, my real road to recovery! 

Having already made some healthy life style changes after the first diagnosis, perhaps it wasn't enough?! After a second diagnosis I have already made more healthy lifestyle choices and in my recovery am even more determined to make many more! I really don't want to repeat another journey like this! 

Talk about all the fun of the fair, I really hate roller coasters and would be completely happy to never have to embark on another one of this magnitude ever again! I now need to try to get back my positivity, gain confidence and strength, hopefully I will get the continued support of everyone all around me to keep me focused in regaining normality and helping me to become the healthy, happy cheerful bubbly person that is still within me! I know I can do it with your help and support!