What a time to be alive...

[CRVB91]

So loooong story cut short because I dont tend to speak on it much; but I had cancer when I was 25 and as a result of treatment and operations, I developed lymphoedema in my left leg - its progressively gotten bigger and bigger ever since, for the most part I ignored it, as I do most things when it comes to physical ailments. 

Anyways, they gave me compression to wear 24/7 in the initial stages - and since then the care has increased and improved. 

I now (usually) wear a fully personalised stocking which is made to my leg measurements every six months, I have bandaging at home to self treat, and I was also given this amazing machine - called a Lymph Assist/Lymph Flow machine - my leg goes into the full cuff - and it moves excess fluid up and out of my leg, it has multiple settings for pressure and different cycles - anyhow, the cycles take 45 minutes+ and as a busy mum, I never really stuck to using it regularly.

Just lately, since May, I decided that I had to start looking after myself better, I'd been given this second chance and frankly I was wasting it in a lot of ways.

I've started walking daily, sometimes up to 10 miles on a good day with supportive walk mates, I have started swimming AND I've started using my pump- every single night without fail. 

I had a 6 month check with my nurses today and I'm absolutely over the moon with how it went - I was 45lbs lighter than 6 months ago AND my leg has improved so much, they have now changed my full length stocking to one that only goes to my knee and I know that medical science is partly to thank for it, I cant imagine how people suffered before these technologies and its been 9 years since I've been able to walk around without a full leg stocking on, I'll never not have lymphoedema but the progress is extraordinary, my nurses were amazed. 😭🥳

If you know anyone with lymphoedema in either their legs or arms, whether it is secondary to a cancer treatment, or they were born with it - I cannot recommend this teeny tiny machine loudly enough. There is a lot of things in my life that still need to change, but the progress is starting to really tip the scales over here 🤩 

(My machine is a Haddenham pulsepress - I'm not sure if they supply the US or not, but I'm sure if not they'll have companies that do make them very similar) 

[MT Matt]

Good for you!  Glad you made changes to your life for the better and progressing nicely!  👍🏻👍🏻

[augercreek]

I have Lymphedema in both legs below the knees due to prostate cancer which killed the lymph nodes in my pelvis. No one has recommended a cure of any kind. The swelling and itching can be bad. My skin is so thin you dare not scratch them at all or they'll bleed. I use a heavy skin cream and gauze wrap daily to be bearable.

[Chester5732]

You are truly an inspiration to those of us that could do a bit more to take better care of ourselves.  

[CRVB91]

7 minutes ago, Chester5732 said:

You are truly an inspiration to those of us that could do a bit more to take better care of ourselves.  

Thats really sweet, I wouldn't say so, but I do think that we should all be doing the best we can and making the most of this very short life we've been given. 

[Dirt_Floor_Poor]

I had some lymph nodes removed in my left armpit when I was 38 during a cancer surgery. Lymphedema was a possible side effect, but I never experienced it. I consider it a miracle that I am alive, since the cancer was caught as almost an accident. There was an acquaintance of mine who was the father of someone I went to school with who was diagnosed at almost the same time as me. We both went to the same doctor. His cancer spread to his brain and he died. Mine was cured with only surgery and as of yet has not returned. You just never know. I thank God I am here for my young kids and wife. 

[CRVB91]

20 minutes ago, augercreek said:

I have Lymphedema in both legs below the knees due to prostate cancer which killed the lymph nodes in my pelvis. No one has recommended a cure of any kind. The swelling and itching can be bad. My skin is so thin you dare not scratch them at all or they'll bleed. I use a heavy skin cream and gauze wrap daily to be bearable.

Unfortunately there isn't yet a cure for lymphoedema, only management 🥺 but even the progress I have witnessed in the past decade gives me hope that those who come after us will be cured. 

[CRVB91]

9 minutes ago, Dirt_Floor_Poor said:

I had some lymph nodes removed in my left armpit when I was 38 during a cancer surgery. Lymphedema was a possible side effect, but I never experienced it. I consider it a miracle that I am alive, since the cancer was caught as almost an accident. There was an acquaintance of mine who was the father of someone I went to school with who was diagnosed at almost the same time as me. We both went to the same doctor. His cancer spread to his brain and he died. Mine was cured with only surgery and as of yet has not returned. You just never know. I thank God I am here for my young kids and wife. 

Mine was found entirely by accident also - i was having a separate medical procedure at the time it was found, everything happens for a reason and despite the difficulties, I too am very grateful. 

[dale560]

3 minutes ago, CRVB91 said:

Unfortunately there isn't yet a cure for lymphoedema, only management 🥺 but even the progress I have witnessed in the past decade gives me hope that those who come after us will be cured. 

The research on all these diseases or ailments is incredible. We just got back from a pancreas symposium gathering in Minneapolis. The endocrinologist that works with the pancreas surgery team does research into cells. She was talking with my wife and son as she is a provider to both. My son is at the U of M majoring In biomedical engineering. And their discussion on dna altered cells and stem cell islet cells for diabetes plus the future of man made cells was just crazy and she mentioned to my wife she would be a great candidate for the stem cell islets when they are approved. There is great hope on the medical front for better and more advanced procedure.

 

Also good luck on your ongoing recovery.

[iowaboy1965]

I'm glad to read you are doing well! Your right there have been a lot of medical advancements. 

Ty for sharing and I hope you continue to do well.

[whweldit]

Way to go.   👍👍👍.     Just got back from 3 month check up at oncologist. All good. Come back in 6 months.   Colon cancer found last August.  Surgery 2 weeks later.  All scans, tests say they got it all.  Colonoscopy at 1 year then 3 then 5 of surgery date.   As of today a ct scan and special blood test every 6 months for 5 years.  Then just blood test every 6 months forever. 

[CRVB91]

29 minutes ago, whweldit said:

Way to go.   👍👍👍.     Just got back from 3 month check up at oncologist. All good. Come back in 6 months.   Colon cancer found last August.  Surgery 2 weeks later.  All scans, tests say they got it all.  Colonoscopy at 1 year then 3 then 5 of surgery date.   As of today a ct scan and special blood test every 6 months for 5 years.  Then just blood test every 6 months forever. 

Glad to hear they are keeping a close eye on things, I was seen every 12 weeks for a year, then every 6 months for 4 years - but my oncologist is amazing and any issues or concerns I've had since shes been straight on it with MRI scans etc. I'm currently classed as in remission, it will be 10 years in September since initial diagnosis - I had explorative surgery 3 days later, 9 hour op 2 weeks after that, and then chemotherapy and radiotherapy through til the February the following year. 

[whweldit]

32 minutes ago, CRVB91 said:

Glad to hear they are keeping a close eye on things, I was seen every 12 weeks for a year, then every 6 months for 4 years - but my oncologist is amazing and any issues or concerns I've had since shes been straight on it with MRI scans etc. I'm currently classed as in remission, it will be 10 years in September since initial diagnosis - I had explorative surgery 3 days later, 9 hour op 2 weeks after that, and then chemotherapy and radiotherapy through til the February the following year. 

Luckily no chemo or radiation. As for scans, I asked dr about mri or pet scan. He said for my type of cancer that a ct scan was the best.  Said it would show clearer with ct.   The colon dr that did surgery had me get a ct before surgery. Said it would give him a great picture before doing surgery.  That dr is also great.  Told several that I believe dr Parker could tell you that you were going to die in 30 minutes and you would be happy.  Super nice guy and super nice beside.  Colons is all he does. Oncologist  Dr says IF it ever shows back up there is a chemo pill to take. Either x number of times a week for so many weeks or x number of times for different number of weeks.  Blood test is looking for the dna of the cancer I had.  Said it will appear in blood test before it shows anywhere else.  They kept a sample of cancer and extracted the dna from it so they know what to look for. Went in today and nurse doing vitals and blood draw was asking questions.  Finally asked if I had any pain. Told her yes, I am near 70.  Of course something hurts everyday.  But don’t worry, nothing hurts today that feels different! 🤣

[CRVB91]

8 minutes ago, whweldit said:

Luckily no chemo or radiation. As for scans, I asked dr about mri or pet scan. He said for my type of cancer that a ct scan was the best.  Said it would show clearer with ct.   The colon dr that did surgery had me get a ct before surgery. Said it would give him a great picture before doing surgery.  That dr is also great.  Told several that I believe dr Parker could tell you that you were going to die in 30 minutes and you would be happy.  Super nice guy and super nice beside.  Colons is all he does. Oncologist  Dr says IF it ever shows back up there is a chemo pill to take. Either x number of times a week for so many weeks or x number of times for different number of weeks.  Blood test is looking for the dna of the cancer I had.  Said it will appear in blood test before it shows anywhere else.  They kept a sample of cancer and extracted the dna from it so they know what to look for. Went in today and nurse doing vitals and blood draw was asking questions.  Finally asked if I had any pain. Told her yes, I am near 70.  Of course something hurts everyday.  But don’t worry, nothing hurts today that feels different! 🤣

Thats funny 😅 I once told one of the nurses my zodiac sign was cancer... she said "is it really?!" .. i chuckled and said "nah but I've got cancer though".. laughter is the best medicine 😂

[TomH]

Great to hear you are doing well! Keep up the good work and wishing you the best!

[Rawleigh99]

Great new!  Thanks for sharing.

I am glad to hear that all of you are doing so well after your treatments.  Keep up the good work!

[mrfred54]

Way to go. You are a great inspiration. I also am a cancer survivor since four years ago. Still getting blood work done once a year now but used to be every six months. I feel very fortunate to be here for my wife ,3 kids and 7 grandkids. Don’t take life for granted anymore.

[Sledgehammer]

Positive news. That's great. Good for you pushing things in a good direction. A positive state of mind is wonderful medicine.