Blood Cancer has struck...
My wife's just been diagnosed with lymphoma and now the doctors have said that it also could be leukaemia. This has been a "spectre" since early November, but the first diagnosis regarding Lymphoma only came in late January. The Leukaemia factor only just today.
One of the issues that she's facing is that this insidious disease has attacked her liver, her pancreas and her kidneys - and as a result of all these organs not working properly she's been inundated with high levels of fluids that as you can imagine has caused her to expand into something unbelievable.
They've tried to drain the situation - 11 litres of fluid in one evening - which is amazing but, as a result of that, she's under quite a different kind of stress.
I'm quite concerned. I don't know what to do because there isn't much I CAN do. The medical team is doing the best they can and so I can only hope for the best.
I do trust the system - I think that here in the UK it might be difficult to get care you need initially – you know, if you have minor stuff. But if you really do have something serious, I have to admit, from my experience now, through this process, that the system is brilliant. They’ve attacked this like the SAS.
The teams are deployed, systems are focused, testing is allocated, and yeah, I think that if you are suffering from something like what my wife is undergoing, I now know that residing in a National Health care type system where you don't worry about it - they worry about it - It is actually good. From local doctors, emergency ambulance services, and multi-disciplinary teams, there has never ever been any comment or suggestion of a bill or payment required. It’s amazing.
However, all that said, it doesn't necessarily give me much comfort because I'm still unclear as to how things are going to resolve.
We've been together since 2003 and we do everything together. And…
There is no difference even in this situation - I wake up every morning… I work my way to the hospital… I'm there by her bedside every day for as long as I can whilst simultaneously trying to maintain my work because that has to happen too. And even after hours, we stay connected via text and email – sometimes even all through the night.
The medical teams are quite sensitive. The nurses and nursing assistant teams are focused completely on her situation and her health but they also do have those moments when they ask me how I'm doing - which frankly, considering the fact that I am completely emotionally compartmentalised (so as to allow me to get through this) I deeply appreciate what they are doing and trying to do.
I only have a few friends locally here in the UK. My closest friends are back in my home state of Michigan. But everyone regardless of the global location is trying to be supportive.
So anyway, that's where I'm at now - it's a bit depressing, but I'm getting through the day-by-day. At least I have a client that is supportive, “whatever you need, it’s least we can do.” almost caused me to breakdown.
So, I'm going to pause here. Only to add that I just thought it would be cathartic for me too sort of reflect on where I'm at right now and the challenges I'm facing. Although I'm not a frequent original poster on DU, I do try to stay engaged and read and understand what's going on and I know that others have posted regarding their own personal issues with health, food and other things and the community support has been wonderful to witness.
I thought I would just at least share some of this and allow a bit of release to occur.
Hopefully I can find some balance.
Anyway, thanks for reading. You don't have to comment, you don't have to respond, you don’t have to rec.
It doesn't matter… just writing this is probably enough for the moment…
thanks DU!
Joe.
= new reply since forum marked as read
Not sure if this will be helpful, but I saw this new cancer treatment they are using at Vanderbilt for liver cancer & posted the article:
https://democraticunderground.com/11469899
I'm glad you both have adequate support, but please feel free to lean in on DU.
I will pray and light a candle in a very special sacred place during my upcoming travels on Ash Wednesday.
All the best to both of you. Please keep us posted as you travel this terribly difficult path. We Care!!! 
It is daunting the 1st few months. Trying to get the body adjusted to everything, then the real battle begins. I know this sounds odd but take care of yourself. If you don't you won't be able to be there for her.
Let me tell you about my Shrek legs.
After my first few Chemo treatments, I swelled up similar to what you described. My brother being my brother said...OMG Merc, you have Shrek feet. I thought the nurse was going to faint. I cracked up and looked at her and said, well he ain't wrong.
I was finally diagnosed with a Pseudomonas infection. I called it a Harry Potter spell. This bacteria is found in almost everything. When you are healthy you just slough it off. Not a big deal. When you get this sick the rules change.
https://my.clevelandclinic.org/health/diseases/25164-pseudomonas-infection
One way to combat this and other infections in the future sounds odd.
A neutropenic diet. Boil drinking water. you can have have canned or well cooked fruits and veggies, not raw. Think applesauce, not fresh apples. The heat destroys the bacteria in your food.
more at:
https://www.mskcc.org/experience/patient-support/nutrition-cancer/diet-plans-cancer/neutropenic-diet
You guys will learn to live by test results and what you can do on your end to make it through this.
It is an awful ordeal, but don't feel defeated. Your devotion and daily presence means so much to your wife. You can fight this better together and hopefully she will be able to go home with you soon.
Sending hugs and hearts.
I am in a situation very similar to yours, I understand what you're going through. Please remember to care for yourself.
If you need, you are among a large group of the most compassionate and helpful people you will ever encounter. All in one place!!
It sounds like your wife is getting good care, and I hope to hear she's doing better soon.
As was mentioned above, it's important that you take good care of yourself, too.
We're here for you.
Stay strong and positive, and spend as much time as you can with her. It truly makes a difference.
My prayers & thoughts are with you and your wife. I'm hoping for the best possible outcome.
Hoping for a good outcome for your wife and that you stay strong
My virtual arms are around you
