I'm at a loss, don't know what's happening. Still in hospital. Very weak. Hb has dropped from 66 to 56 in four days despite copper treatment. My physician has called the oncologist back in. It's not looking promising. I've been given the "failure of treatment" talk.

Just too tired to care much at this point. Sleeping most of the day and night but feeling more settled than a week ago.....much less pain.

Hi Chirley from Mt Hagen in PNG. We're over half way through our volunteer stint. The usual vicissitudes of a third world environment but getting lots of work done. Hard to know how much will be achieved - they are really keen on introducing voc ed to assist kids leaving school to get jobs but there are road-blocks too such as classes of 60-70 kids so their workload is already huge without something new being added. Working with deeply committed great people.

So sorry to hear of your apparent decline at present. Thinking of and praying for you. I hope your onc has a brilliant idea to get you back to independent living again! Enjoy your flights into the world of imagination - those beautiful places you like to visualise as you rest.

Oh Chirley, I am sadden to read your post! Like Cheryl said, I hope the onc has some new & unusual ideas to help you. I can only imagine how a hb of that low feels like.. Thinking & praying for you too xx

I'm so sorry to hear the copper is not doing it's job anymore. I too hope the Oncologist can shed some light on things for you.

Thinking of and wishing you only the best.

Marlene

Well, I'm back after being given blood transfusions and copper. The news is that it "looks like youre now resistant to copper" to provide the exact quote. So I don't know where I go from here. Watch and wait I suppose. I feel much better after the blood transfusions though.

Good to hear something positive from you, Chirley. I hope the transfusions give you some lasting relief. Does "resistant to copper" mean that you went through that process for no benefit?

Hi Cheryl. I really don't know what it means. I didn't speak to my physician or haematologist. I saw my GP who had spoken with the physician about the results of all the tests I had taken on my last admission amongst other things and that's what my GP told me was the conclusion they had come to. The upshot of it is that I'm not going for regular copper treatments any more but my GP is going to monitor my blood counts and when my Hb falls to 80 he will refer me to the hospital for whatever treatment they deem appropriate. Hb currently 100 after another 3 units.

My neuts are sitting at 1.0 and lymphs at 0.4 so I'm very happy with that. I no longer have a j tube for feeding because the one I had got infected with pseudomonas again....I insisted it was removed! I just had enough of putting up with green offensive pus coming from my abdo every other month. Seeing a surgeon next week about whether a new one (hopefully without the continual infections) is a possibility. I may just have to have a nasal feeding tube. Currently 43kgs.

I'm surprised that I'm feeling better than I have been in quite a long time. I even went out shopping just for fun yesterday, came home very tired but still felt well. Now...to try and grow some hair back would be nice...I'm cold!

Oh Chirley - do try and get some nutrition into yourself ASAP! I am small at 51 kg but 43 is something else.

So pleased that your bloods have reached liveable levels. I do hope this continues. Enjoy!

Hi Cheryl, I went to an upper GI surgeon today to see about having another feeding tube inserted into my abdo wall and came away a bit shell shocked. Despite my medical problems he is adamant that I need a Roux en Y bypass surgery to bypass the part of my stomach that is abnormal, prevent the food regurgitating into my oesophagus (which doesn't function properly) and allow me to eat. Unfortunately I'm not a candidate for keyhole surgery so it's open surgery as well. He wants to admit me to hospital and put a feeding tube down through my nose through my stomach and into my small bowel and feed me hyperalimentation for a week prior to surgery.

I told him I wasn't keen on having any surgery but I promised to go away and think about it.

All up it would be about three weeks in hospital if all goes well. It's normally a shorter stay but my surgery would be open and my nutritional levels not good and I have existing medical problems...that's why the longer hospital stay.

Oh, and just for an added bonus...he charges more than the insurance company covers! So I imagine I will be about $5000 out of pocket as well.

I've given myself a deadline by next Friday to make the decision.

Thought I'd post an update. I've been re admitted to hospital. I'm in complete isolation due to neutropenia. Never been in this situation before. Everyone is wearing long sleeved gowns, masks, gloves etc.

I have no idea what my count is.

They attempted to insert a feeding tube yesterday but it was unsuccessful. The x Ray tech couldn't push it through my stomach into my small bowel, so I'm having one put into today under sedation in theatre. Surprisingly, the one yesterday without sedation wasn't that unpleasant even though it wasn't successful. I didn't even gag!

Thinking of you Chirley. So sorry you have had this setback when things seemed to be looking a bit better. I do hope that the procedure today will be successful and will allow your body to receive the nutrients you so badly need.

Thanks Cheryl....feeding tube in.

I'm having my second transfusion this week. That's not great. Neuts still low enough to be in isolation but no matter how many times I ask they just won't give me a number. I guess that if its low enough for isolation then that's all I need to know.

I'm still on the potassium drip too. The good thing is that I'm feeling so much better than I was on Monday.

Praying for you, Chirley, and glad you're feeling better. Catherine.

Thanks Catherine, really glad to hear that you and Bruce are soldiering on. I'm sometimes truly amazed how much our bodies can take.

Good news for me.....neuts have risen all by themselves....finally got a number out of them. They have come up to .6 again so I'm in the safe range and no more isolation.

My BP has climbed to the high 80s/? so IV fluids have been reduced and because my body is responding nicely to being fed again I don't need the potassium any more. I was even told ? home Monday. Another bump in the road it seems.

Still alive.

Great that you're posting Chirley. I've been wondering how you're going. That's hopeful news. 0.6 neuts is OK - mine sit around there a lot, but of course I don't have the other issues you have to contend with. Will be wonderful if you can get back to your cats on Monday!

That's wonderful news, Chirley. Going home is awesome.

Got a throat infection from the feeding tube and it's been taken out. I'm back in hospital, in isolation, due to low neuts. Interestingly, I never got a fever. (well, only mildly).....I suppose I didn't have the capacity to develop a fever. However, direct examination of the throat showed the infection with swelling and some redness. I know it was very painful but it's a lot better now.

They (surgical docs) want to give me Neupogen but I'm a bit wary as I've had excess blasts before and the haem wouldn't give me Neupogen then. I've asked the surgical docs to check with the haem docs first but that hasn't happened.

Haem docs said to give GCSF so I've just had my first dose ever.

Has been praying for you. Your story are so inspiring. So glad you are getting better.

Hope you have a good response to them. They do make Bruce very achy, but they have pulled him through some very bad infections.