Hi, newbie here

I'm Virginia, hello!

I have Stage 4 DLBCL that has spread to my right leg and completly destroyed 4 inches of tibia. Very aggressive little DLBCL blighter!

I'm keen to hear if anyone else here has had that type of metastasis?

Thank you so much for listening to me, Id like to just talk a little bit about what's happening if that's OK. I'm alone and I haven't had any opportunity to talk with anyone else with the same disease at all.

I'm coping well under the circumstances. Of course Im human so I have low days, but for the most part I just get on with it it. As hard as it is.

Fiends just don't get it! Have you experienced that? They don't understand. And have no notion of how to support. I guess most see cancer as just the flu these days!

Some have disappeared completely, and some contact me with a blase` "How are you" sentence once every couple of months. They have no concept of what I'm going through with chemo and my leg. When all the time you're fighting for your life and feeling terrible with side effects, their flippant occasional 'how are you' seems so empty. To be honest I find it insulting.
Have you had the same experience?

Also I found something quite amazing happened and I'm keen to hear if this has happened to you too. I have about 5 extremely close friends, and the ones I really thought would be there for me to support me emotionally and with their hearts, completely disappeared, and to be honest the friends I thought wouldn't really care very much have turned around and been the most supportive. It's extraordinary. But very strangely not one of them has offered to do my weekly shopping for me. They know I'm in a wheelchair and I can't get out, and I can't go to the shops. This I find really extraordinary.

If I had a friend who was alone and incapacitated and immobile, the LEAST I would do for them is do their shopping once a week. I mean, how hard is that?

So it's just amazing to me that no one has ever offered! And believe it or not, shopping is one of the most challenging parts of this cancer experience. I'm forced to online shop and the shops set high minimums and put their prices up. And they don't have the more affordable ranges in full online.

Another phenomenon is that I look well in my face, and I think people imagine that I'm making it all up. It's so frustrating!!! I don't know why my face doesn't look haggard and ill from all the drugs and illness, but it just doesn't. I suppose people have a preconceived idea of what someone with stage 4 cancer should look like. I get the same reaction from everybody. People think I'm lying. Thank God the doctors and nurses know the reality. Have you had this experience too? People shocked that you seem to look well?

The cancer metastasis has rendered me incapable of walking, so I'm in a wheelchair with a cast on my leg. I've been wearing the cast for nearly 7 months now. 2 months was spent in toe to thigh-length casts. The 4 inch bone gap the cancer created can't heal back together properly until after I finish all the chemotherapy, because the chemotherapy also kills the new growth as well as killing the cancer. So it's a huge big fat delimma on top of going through chemo. That's why I really want to find someone else who is going through the same kind of cancer metastasis. Surely I can't be the only person.

I think if I didn't have the stage 4 that moved to my leg, and if I was able to walk, my experience of this cancer would be entirely different. I would be able to go outside, sit in the sun, go to the shops, use my bathroom, use my toilet, and do everything that mobile people do.

I'm a very practical person, and I live alone, so I've just had had to get on with it and deal with every day as it comes. I've learnt that I'm stronger than I ever thought I was. But really I have no other option, its sink or swim!

Although, it IS getting harder and harder as I progress through the cycles of chemo. I found from cycle 4 hard-going as far as keeping my spirits and energy up. But I understand where it's coming from, my body is being pounded by the chemo and just can't recover fully each cycle, so it's affecting everything. To be honest I thought by now I would be in a worse position physically. However, from cycle 5 suddenly I'm incredibly weak physically, but not as bad as I imagined that I might be by now.

I found browsing the community posts today very helpful reading other people's experiences. Because what I thought must have been incredibly odd, turns out that pretty much everybody has the same chemo side effects experience, and that's somehow makes it easier knowing that I'm not alone in this.

It's interesting that every cycle you get very similar side effects each time like clockwork. But number 5 hit me much harder as my body is weakening. Yikes, number 6 is coming, if I'm this weak now what on earth is going to happen in a couple of weeks time!

Like everyone else having Rchop, I have aches and pains, particularly in the worst site of cancer, which is really very painful. And I have fingertips that I cant feel, numb, feel as though they have been wrapped in tape come and I can't pick things up well. My fingernails are sore. The first few cycles my finger tips felt like they were made of ice. My skin in some places feels like rubber, it's stripped with no oils. Feels like plastic. I can't explain but those of you who have this experience will know exactly what I'm talking about.

Sores, nausia, diahorrea, fatigue, pain, horrible stripped GIT stomach pain, no hair, almost no sense of taste or smell, dizziness. And the bloody horrible steroids make you hyper and you can't sleep for a few days.

Number 6 is Nov 14th, then I have my final PET scan December 1st, followed by a month or two of radiotherapy and then I think maintenance for a couple of years, so we shall see. I hope to be able to walk by next summer.

Thank you so much everybody for listening to me go on and on and on. It's a unique experience for me to share with other people who are potentially going through exactly the same as me.

Thank you so much for listening. The McMillan support has been extraordinary. It is sheer genius!