I thought I would post an update.
I had an indwelling Pleural catheter about 4 weeks ago and the district nurses having been coming out most days to drain me.
It has been hard getting the balance right between frequency of visits and volume. At first it seemed that as fast as the nurses were draining my chest the fluid was coming back again. We tried increasing the frequency of visits then we tried using bigger bottles.
Gradually the drains became more painful and the nurses were getting less off at each visit because I couldn’t tolerate it.
I had a CT scan on Thursday that showed my pleural effusions had increased since my last scan but the solid part of the cancer has mostly remained stable. My oncologist was prepared to step in and offered me weekly taxol just to try and get on top of the effusions.
I have said not yet because I think it would be a short term fix. I am still waiting to hear from the consultant radiologist who is currently on leave. The reason this is taking so long to sort out is because it is a very rare condition and not a very common technique. I get the impression from things that were said in my oncology appointment that the team are not hopeful of its success. They may well be right but it’s a risk worth investigating.
Immediately after seeing my oncologist I then went over to another hospital to see the pleural team. I had a chest x-ray which confirmed the fluid on the right side of my chest has much reduced and the left side (which we have done nothing to yet) has remained stable.
We discussed doing something with the left side. The chest docs think there will be little benefit from treating the left side as it is a smaller effusion. I feel that the combined volumes probably are contributing to my breathless and if we tackle it now we can stop it getting worse in the future. Therefore I am going in next week for 4/5 days so they can drain and talc it.
The district nurse came yesterday afternoon to drain the right side and it was pretty slow and it took ages to drain off 350 ml. Therefore we decided to see how I get on with drains every other day. I am still getting breathless but it’s hard to say if it’s the right or left side or a combination of both. However it is more manageable than it has been recently.
I have also been getting a lot of right sided back pain most of the time and this was getting worse during drains. The doctors don’t really know why I am getting pain the drain itself should not cause this. They have hypothesised that because I have had an effusion on the right side for a long time that my lungs might have become ‘stiff’.
My GP prescribed some co-codomol for me and today my pain seems to be under control. I am slightly worried that there may be some permanent damage to my lungs so I may never breath normally again.
The OT from the palliative care team came out to see me last week. She has arranged for some equipment for me such as perch stools, raised toilet seat and a mattress adjuster. It is amazing how much difference this equipment has made. I find bending and lying flat really uncomfortable. Last night was the best nights sleep I have had in weeks. I managed to sleep through until 6 am.
One of my other pet worries is dealing with the symptoms of the cancer spreading. My oncologist talks a lot about treatments and side effects of treatments but we have never really talked about the consequences of living with cancer and symptoms from the cancer spreading. This past year the cancer has spread through my lymph nodes into my chest and neck. This year I have had ongoing problems with my sinuses, throat and ears. It has been driving me nuts I have been to ENT have tried various nasal sprays with limited success. Wednesday it was really bad I sounded bunged up and I was having trouble with my left ear. It did subside after my chest drain but that may just be coincidence.
Other good news is I have been awarded PIP for another 3 yrs so I get to keep my car. I would never get to all these appointments without it.
Apologies for rambling but thanks for reading xx
Recurrence - PET v CT?
worried about possible recurrence 
Nodules on the Omentum - worried
Deflated low grade worries!
