Lymphoedema

CT Scan

Today is a week since my operation, I'm recovering physically and mentally a small bit each day but it's been very tough going.

I had yet another scan today, a CT scan at East Surrey. This one is to establish baseline results for my trial. We got there for 09:30 and I was ready to drink my 600ml of water in half an hour to ready my body for the IV iodine when I was called into a side room. "Mrs Clarke you need to have a blood test,  we need to make sure your renal function is ok, it has to have been in the last 6 weeks and the last one we have for you is 7 weeks old". Me, bugger. Because I've had lymph nodes removed in my left arm and therefore am at risk of lymphoedema in that arm, it always has to be my right arm that's used for bloods, IVs, blood pressure tests etc. I.e. My sore and painful arm.

The nurse there tries to take me blood but my veins aren't playing ball. After being stabbed in my poor sore arm, I go to phlebotomy where they get the bloods, it's sodding painful though. We then head back to the scanning waiting area and wait for a while until the bloods come back. Eventually they do, all ok and I can start drinking the water.

I'm then called into the CT scanning room, I know the drill, asked lots of questions, I try not to scoff/cry when they ask me if there's a possibility I could be pregnant.... I'm asked to lie on the bed and the team leave. The scanner whirs around me, takes a few images and then the team come back in to the room and cannulate my poor arm. The iodine dye is injected and I feel like I've wet myself, totally normal apparently:

When the iodinated contrast is injected, most people will get a strange metallic taste in the mouth and feel a warm sensation through the body. This warm sensation may concentrate around the groin or buttock region and can feel like you may have wet yourself, even though you have not. Do not be concerned if this happens, it is a common sensation and usually goes away within a couple of minutes.

I then have a number of images taken and have to hold my breath at certain points. After about 10 minutes it's finished. They remove the cannula from my poor pin cushion resembling arm and I can go home. I have two days' respite now and then on Thursday I have more scanning and tests. Tomorrow and Wednesday I need to try and recuperate some more.

Spiders & Lymphoedema

Yesterday whilst walking Fagin in the woods I got bitten on my elbow by a spider  :( Ouchy!

 

I used some antibiotic cream and took an antihistamine but when I woke up today my arm was hot, bright red and swollen. Because I had an SNB during my operation I am at risk of something called Lymphoedema. Therefore I made an emergency appointment with the GP and got prescribed a week's worth of antibiotics (they are the size of horse pills!)

 

 

Lymphoedema is something that I had never even heard of before I was diagnosed with breast cancer. As soon as I did hear about it I was really scared that I would get it.

 

Let me explain a bit more.. Lymphoedema is the swelling that develops because of a build up of fluid in the body's tissues. This happens when the body's lymphatic system isn't working properly and cannot drain fluid away.

 

After treatment (surgery and/or radiotherapy) for Breast Cancer, the areas most at risk are your arm, hand and armpit (axilla). This is because during surgery you have 1 or more lymph nodes removed to test for spread. The more lymph nodes removed, the greater the risk of lymphoedema. Around 25% of people who have had BC surgery will develop it. As I had an SNB, my risk rate of developing lymphoedema is around 10%.

 

Unfortunately there is no cure for lymphoedema so the best idea is to try to reduce your risk of getting it in the first place. This is easier said than done which is why it is something that worries me so much.

 

 

Tips for Reducing Risk (taken from BCC):

·         Gentle exercise such as swimming or walking will keep your joints supple and is important for lymph drainage.

·         Look after the skin on your ‘at risk’ arm.

·         Try not to use very hot or cold water.

·         Avoid very hot saunas or steam rooms.

·         Avoid having your blood pressure or blood samples taken from your ‘at risk’ arm.

·         Avoid having deep-tissue massage to your ‘at-risk’ arm.However, there is no need to avoid massage altogether.

·         Try to avoid cuts, scratches, insect bites or stings on your ‘at risk’ arm.

·         Avoid biting your nails.

·         Avoid getting sunburnt.

·         Take care when removing unwanted hair in your armpit. Using a well maintained electric razor is the safest method. Waxing is not recommended because it can cause damage to the skin and might increase the risk of infection.

·         Avoid constriction around the arm and armpit from tight fitting bras, sleeves and clothing or heavy shoulder bags.
Ensure watches, rings and bracelets are not too tight.

·         Try not to strain with activities such as pushing or pulling, digging the garden or heavy lifting such as carrying heavy shopping bags.

·         During long journeys, gently exercise your arm as much as possible. If you are standing on a train or a bus, try not to hold on with your ‘at risk’ arm.

 

So as you can see there are loads of things to avoid! When I got bitten by the spider I started to panic a bit but got antibiotics pretty quickly so I hope I have done enough to minimise my risk. Since doing some more research though, I have learned that even if you do do any of the things above, it doesn't necessarily mean that you will get lymphoedema, just as some people who don't do any of the things above may develop it anyway. It's all down to the individual's drainage system. 

If you notice any changes to your skin, signs of swelling to your arm, hand or chest wall, redness or infection then contact your GP. They will prescribe you antibiotics or refer you to a Lymphoedema Nurse.

As I said before, there is no cure for lymphoedema but it can be managed through:

Compression Garments
These work by:

• compressing the swollen tissues and stopping fluid from building up
• helping to move fluid to an area that’s draining well
• providing support, which allows the muscles to pump fluid away more effectively
• applying more pressure in certain areas to encourage the fluid to drain.

These aren't all horrible tan colours thankfully:

Specialised Massage
Manual Lymphatic Drainage
Simple Lymphatic Drainage

Limb Positioning
Info from Macmillan

Lymphoedema does sound stressful but manageable and thankfully there are some really helpful sites out there:

The Lymphoedema Support Network
The British Lymphology Society
Macmillan

Fingers crossed my antibiotics do their job!

 

 

 

 

 

 

 

 

 

 



 

 

 

Brighton Young Women's Forum

I have just come back from 2 fantastic days in Brighton at Breast Cancer Care's Younger Women's Forum.  It’s ten years since Breast Cancer Care held the first Younger Women’s Forum. They run six forums a year around the UK, each bringing together around 30 women under the age of 45 for two days of tailored information, support and sharing experiences. Before I went I was pretty apprehensive. The thought of signing up for two days away from home with a group of strangers, whilst dealing with treatment for breast cancer, didn't exactly fill me with joy. I had visions of everyone sitting around being miserable and making other people feel low. I also had silly visions of everyone taking their wigs off in a Roald Dahl's The Witches stylée! In the end I made the decision to go (and I'm bloody pleased that I did).

So What Was It All About?
I had made friends in advance with a couple of girls on Facebook (via a Young Women's Group) and arranged to meet one of them, Nicola, at Brighton station. We grabbed a taxi together to the Old Ship Hotel, and went into the reception room where we were given our name tags which also said our locations on. It was nice to see a few other girls from the Sussex area, and we had a quick chat before moving upstairs to the main room where we would be located for the next 2 days.

One of the women running the forum explained how everything would work and then we went into our first session which entitled "Medical Update - Management of Breast Cancer in Younger Women". It was very interesting and we could ask any questions we wanted. After that we had lunch and I met a lovely girl called Amie.

After lunch there were various Break Out Groups covering the following topics:

• Breast Surgery & Reconstruction
• Menopausal Symptoms
• Relationships & Communication

You opted one to go to of the sessions and then there was an hour's information session on your chosen topic.

We then had a refreshment break before moving into a Well-Being Session of either:

• Laughter Yoga
• Relaxation

I chose relaxation and had a great session where I almost fell asleep as I was so relaxed!

After the Well-Being Sessions there was free time for a couple of hours before we came back to the main room to watch a mini film. The video was celebrating 10 years of the Younger Women's Forum and featured women who had previously attended the forums.

After the film, we went down to the main restaurant for dinner which was followed by drinks and gossiping in the bar :)

The next day we started with a session about the different services provided by Breast Cancer Care (you can find more out about the services by following this link) which was really interesting as there were a fair few I hadn't heard of before.

After that we went into Break Out Groups again. This time the topics covered were:

• Intimacy & Sexuality
• Fertility After Treatment
• Lymphoedema

After a break, we moved onto a session on Healthy Eating & Diet myths which was really interesting, there are so many things going round about Dairy, Sugar, Soya etc. It was good to be informed so that I could make my own decisions.

We had lunch, and then moved onto a session from 3 speakers who had been affected by bc in some way. One was a lady who now volunteers with BCC, one was a man whose wife sadly passed away from bc and as such he is now a prolific fundraiser for BCC, and another was a lady who had been to the Brighton Forum last year and gave us a chat on "Moving On".

After that we had a session on exercise where we were given some information, and then we had to get up and actually do some exercise!

Then the forum was over :( It absolutely flew by and was brilliant. We all exchanged email addresses and have since set up a Facebook group to stay in touch with each other.

Some of the group from the BCC Brighton Forum

If anyone is in a similar position to me and is thinking whether or not to go to the forum, please do. It was fantastic. The whole thing (including the hotel and all meals) is completely free (funded by BCC) and what an amazing lifeline it is.