I'm interested in conversations about and I want to talk about
Know exactly what you want?
Show search

Notification

Error

Lymphedema

User
Posted 25 Sep 2016 at 15:12

Hi its been a while since i last posted anything and in the time between i have experienced all different treatments to halt the spread of the cancer, but it seems i am now down to the last throw of the dice!! I am on Stilboestrol and after that goes south (which so far they all have) its goodnight sweetheart, months as opposed to years!!!

Anyway my reason for this post is not to be gloomy but to see if anyone has any practical help for my current side effect, i am suffering with Lymphedema which to begin with affected my legs but has now spread to my abdomen including my genitals.  I have a scrotum the size of a small rugby ball with a small curled up what used to be a penis sitting on/in the scrotum all the skin has tightened making it almost impossible to use the toilet for no1 and 2 at the same time.

I could do with anyone's ideas past experience on this matter as i am told by my Lymphedema nurse to get some cycling shorts!! this does not however help me in the middle of the night when i am peeing down my hand because its the only way i can half direct the flow of urine into the pan.

Any help would be appreciated

 

Alfie

 

POST TEMBRES LUX

VIVA LA VIDA

AlfieJ

"Viva La Vida" Long Live Life (Frida Kahlo)

User
Posted 26 Sep 2016 at 21:25

Hello Alfie. I'm bumping your post for you as I see it hasn't been answered.

Can't really help as I don't have your kind of lymphoedema but as far as night time peeing is concerned, could you not use a urine bottle (the sort with a wider neck) and then empty that into the pan?

Hopefully somebody else will come along now I've bumped

Best Wishes

Sandra

********

We can't control the winds - but we can adjust our sails
User
Posted 26 Sep 2016 at 22:36

Alfie, sorry to read this. I don't think there is much that can be done - some lymphoedema nurses can do a special massage that releases some of the pressure but I don't think it will help your pelvic / scrotal swelling. We did have a member some time back who ended up with a catheter because the swelling was so bad, but I suspect that would be a last resort?

It is good that you have a lymphoedema specialist nurse to support you but have you also been referred to your local hospice / Macmillan nurses / maggie's centre? Sometimes, they have ideas and facilities and access to things that your NHS nurse cannot offer - I wonder if it would be worth checking out? And have you been seen by a physiotherapist or occupational therapist? They might have different ideas.

As the doctors are now saying months rather than years, have you started to apply for benefits? These are available to everyone who could reasonably be expected to have less than 6 months but many oncos are happy to sign them for someone who is thought to be in the final 12 months - it is about 'reasonable expectation' rather than 'definite'. The hospice social worker or macmillan / maggies worker could probably help you complete the forms.

https://www.mariecurie.org.uk/help/money/benefits-entitlements/living-with-terminal-illness/special-rules 

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 01 Oct 2016 at 13:19

Hi,
Thanks for the reply's, I do have an allocated palliative care nurse from St Margaret who is doing me and her profession proud. We have decided that having a catheter fitting is going to be the best solution, so I am just waiting for an appointment to get it sorted meanwhile its make do time!

As far as benefits go my GP signed me the D form that states about less than 12 months to live about 8 months ago so i am getting most if not all that is available.

Thank you once again for your comments.

AlfieJ

"Viva La Vida" Long Live Life (Frida Kahlo)

User
Posted 01 Oct 2016 at 20:46
Hey Alfie

My hubby has two catheters, greedy thing! But it makes a difference but he still gets oedema in his legs. On the benefits side we got the D form., Twice and soon to run out, keep the faith my friend. Per a recent post aspirin seems to make a difference.

Devonmaid

 
Forum Jump  
©2024 Prostate Cancer UK