Lymphoedema - the fun never ends....

Hi ladies,

I've not been on the forum for a while - been trying to get on with life and put some of this stuff behind me. Not been easy to do that as I am hitting lots of first anniversaries of diagnosis and treatment around now and it's hard not to think back to this time last year. 

Of course the other thing that has slightly thrown me off is developing lymphoedema in my left leg which feels like CC sticking two fingers up at me. Glad to be alive but this really sucks. It took a while but I finally had a proper lymphoedema assessment at the clinic this week (although I already had a diagnosis by my consultant) and I am getting a compression stocking next week, deep joy.

Anyway, re all this, I wanted to share some experience. I work for a small but caring organisation and when I spoke to HR about my leg and how sitting at my desk was making the swelling worse, they arranged for an Occupational Health nurse to come in to assess my workstation and working arrangements. It was very helpful and as a result I now have agreement that I can work flexibly and pop out for little walks during the day as sitting in one position all day makes it much worse. I still do my full hours and fit exercise in around meeting and things. This is in line with the employers obligation to make reasonable provision for us under the Equality Act (people who have had a cancer diagnosis are included in that).

The OH nurse also recommended a leg rest so I can elevate my leg and a more supportive chair so I don't end up aggravating my back by sitting with my leg up. The cost of the equipment she recommended came in at about £500 and the good news is that the cost of that has been covered by the government under the DWP Access to Work scheme. The process of getting the grant was pretty straightforward, particularly as I had an official assessment and my employer was already doing their part.

All of the details of the scheme are here and it's worth noting that they will also help if you are self employed.

Hope thi is helpful - keep fighting the good fight everyone!

Hi Rosehip, lovely to hear from you! I never forgot you as you were the first person to welcome me to the group :D Im so sorry to hear you have had some problems but on the other hand it's great to hear how your moving forward. Also great news about the assistance you are receiving in the workplace. Please keep in touch and stay on that positive path. Hugs from Shaz x

Hi Rosehip,

Thanks for the update. Did they offer you any manual lymphatic drainage massages and did this help? Xxx 


Hi Rosehip,

I can really feel for you with the lymphodema issue, mine started in july in my right foot/ankle along with my pubic bone area and between ones legs lol....I literally only had it in my foot/ankle for about a week and then it went - think I bought it on by doing a lot of walking whilst away for a few days - but I constantly have it on my pubic bone right below my r/h scar downwards thankfully it doesnt effect betwen the legs to often just when I have over done it.I have gone from wearing skinnies and smart trousers to tights and leggings with a good pair of knickers to keep it under control and most of the time its not to much of a problem, unfortunately they dont do a compression garment for this area so have to shop wisely!!.

I have recently had another 3 monthly CT scan which along with very low blood counts made them stop my chemo as apparently my bowel was looking very unhappy!! - there was also a few fluffy areas of concern around my bowel,tailbone and pubic bone area but my oncologist says at the moment they are not sure if its the bitch back or inflammation so have to wait for another scan in jan, so  I spoke to my local pharmacist who is really helpful about whether there was anything I could take to maybe help with inflammation he recommended Bromelain which apparently is well used in south africa, I have been taking for about 10 days now and I feel sure that my pubic area is not as swollen as before for most of the day - might just be a coincidence but you never know.

So now I have to try and relax and enjoy the festive season - which I am finding a little hard with the constant concern - until my next scan.

Take good care of yourself and well done on your employers - great to hear.



LOL - not sure what all the funny symbols are - bloody computers! x