Hi Mike it has been quiet journey over the years I was on w&w for a long time my blood count where stable then I started getting more infections joint pain lumps in my neck and feeling generally un well at the moment I am on ig infusion once a month it helps it is the mental side I am struggling with over the years
How often do you see your Haematologist? Have you taken these issues up with him/her?
Are your lymph nodes swollen still or has the IVIG helped. How long have you been on it?
Are you getting exercise? I know we are supposed to stay home but exercise is essential for our health including mental health. I go for cycling/walking/jogging aiming to get in my 10000 steps a day. Fortunately, I live close to the seaside where, if I can get out early enough, dont come across too many people.
Since we are in lockdown for at lease 12 weeks, I would suggest getting into some exercise, I'm sure that will help raise your spirits.
DO you have a care team around you? a designated nurse or MacMillan nurse at the hospital you attend?
I was getting multiple chest infections last year and after a High Res CT scan, found to have Bronchiectasis. The exercise definitely helps with that, to help clear my chest.
I think you need to get proactive with your care team. Are you alone in your isolation? How are you coping with the lockdown with regard to food etc?
Lots of questions, sorry but I can't give advice except to try to get some exercise and open up here, there's plenty of support here and also here at the CLL Support Association forum at Health Unlocked https://healthunlocked.com/cllsupport
Hi mike I am well looked after by my team the igs really works well I have a great family and o keep fit in the garden I was diagnosed when I was 43 I am now 58 it is the mental side I have a problem with still
I strongly advise you visit the CLLSA at Health Unlocked. There are far more people there who might be able to point you in the right direction, best wishes
Well, I thought about the question for a while and what arose was more of an emotional response. I'm lonely, scared, and feel like I am continually trying to find ways to deal with the isolation that I experience. I have had CLL for 11 years and started Chemo after year six. I’ve been in remission. Due to the treatment, my immune system is very weak. IVIG helped, but it hasn’t been a consistent treatment - plus they have a hard time getting an IV in me. I’m divorced, and don’t have a relationship with my son. I’ve tried some dating sites, but for numerous reasons it hasn’t worked out. Women generally don’t want someone with cancer, and I’m nervous about potential intimacy because I get sick so often. I play guitar, and that’s what keeps me going. I play behind the ‘no name’ restaurant on the pier overlooking Boston Harbor and at various parks. With everybody (almost) wearing masks due to COVID 19, it actually helps me out. I’m grateful for Netflix, Prime, YouTube, music, and art.
My mother, father and brother have passed away recently so I’m hope to connect with some people on this site. I love comedy, and laugh quite easily, so I know my pilot light isn’t completely distinguished. As Woody Allen mused at the end of his movie Manhattan...” What makes life worth living “ He made his list, and I’m trying to make mine. PS not a fan of that man, but I do find meaning in some of his movies.
