Back on chemotherapy.

After a pretty gutty week I recovered enough for my Oncologist to put me back onto the chemo program, this was such a relief as I feared he would think me too weak. I walked into his office with my head up, shoulders back and a big grin in my face to convince him I was OK. I was able to explain my previous poor week’s condition on the cough, which the anti-biotic seems to have pretty much cleared up. He compared me to how I was when he gave me the 4 – 8 month prognosis and said I seemed so much better, which was very encouraging. He also seemed encouraged that I can feel a lessening of the pressure in my chest, which may be due to the chemo working, or the cough being helped. He has agreed to delay my CT scan for two weeks, to get a better picture of what is going on after three chemo cycles, instead of the two he originally booked for. I was going to have the scan Friday 7th October, but will now wait for the new date.

I am supposed to be going to Germany to see the Prof. on 28th October, but I think I will delay or postpone it until after the chemotherapy finishes for the mesothelioma. I didn’t realise the embolisation stayed in place for two weeks and I don’t want to lessen the effectiveness of the chemotherapy. I will make a decision once I have the final CT scan results.

I am not feeling too bad with the chemo at the moment; the exhaustion and tiredness tend to kick in once I stop the steroids after three days, then I have four days to get fit to take the second tablet of the third cycle.

The main problem I am having is in breathing, I get puffed doing the slightest thing and have to rest for five minutes if I need to get up the stairs. I have tried steroid inhalers but they take my voice away, then I sound pathetic and the Doctors think I am failing again. A catch 22 situation,

We have lost yet another meso warrior this week, and with another in her final days. It is such a waste of innocent lives all for money and greed by the perpetuators of the asbestos industry. It is still not banned in the USA; Canada and Russia are producing tons of the stuff, and third world and developing countries are buying it up as if there is no tomorrow. When will the madness end?

I missed the Uk Mesothelioma Conference where I would have met up with many of my fellow meso warriors and learned of new developments in the pipeline, which are few and far between. They all had a good time and related the new information to me. It seems we don’t even have a mesothelioma Medical Trial database in this country, and there are only a few trials happening here too. It seems we are lagging the rest of the world in this respect.

On a positive note, although two months into my prognosis, I feel no worse so can only hope the goal post have changed a bit, and I may yet defy the odds, as I hope my feloow sufferes will too.

Thank you all so much for the love and support, it really does help.

Chemo delayed.

I have had my two doses of Venorelbine chemo, but I am not recovering so quickly this time. They did increase the dose by 25% and this seems to have made a big difference. It has left me weak and exhausted, sleeping a lot and a bit emotional. I was in this state when I went to the hospital to see the chemo nurse to check I was OK to continue the chem. Although my bloods were good, as I was quite run down, and even wretched while I was with her, she declined to give me the chemo and said to put it off for a week, then see the Oncologist. He is the only person who can stop the course of chemo which worries me a bit if I don’t feel any better. I will go in with a big smile on my face and be as upbeat as possible to persuade him I am fit enough. However, I am improving each day, so fingers crossed.

My persistent cough has not gone so my G.P gave me some antibiotics, which I find makes me sick, this is why I wretched, which happened when with the chemo nurse, confirming her position about my fitness for the chemo. I now take an ant sickness pill at the same time, which seems to be helping, but the cough is not going, so it wasn't a chest infection. My GP thought it wasn't but said the antibiotics won't do me any harm, so worth a try. I have to take the whole course so have to keep taking them until Sunday.

A nurse friend suggested taking Tramacet for the pain and I have some from a previous visit to the Doctor. The packet was full so I had not needed to use any. Within hours of taking the Tramacet I was being very sick and couldn't’t control it with the meds I had. It got so bad we had to call in the Doctor on call and she gave me an injection for the sickness. This too didn’t work, so I went to bed, as lying down seemed to help. I realised that I was allergic to Tramacet as the next morning the sickness had gone. I seem to be allergic to so many helpful drugs, which is a nuisance.

I have had some serous pain and the Hospice Doctor has given me Oxy-norm which works, but leaves me feeling very drowsy. Medicines are all about swings and roundabout, doing some good but giving harsh side effects.

I am now hoping upon hope the oncologist doesn’t take me off the chemo, as this is my last chance of any treatment. He might reduce the dose which would be a disappointment as I want the chemo to work as effectively as possible.

On a brighter note, my little sister if off to Italy, for a couple of weeks with her son, his wife and two year old daughter, but I think they are very anxious for her. I must say I am a bit concerned too as she can’t get insurance and may need treatment whilst she is there. Also her red blood cell count is down to eight, normal is eleven to thirteen. She is to have a transfusion, but not until she returns. However, she is a very brave lady and I admire her courage to make the best of her shortened life.

My picture is of our Grandson Joseph at his first day at school. He looks so grown up but is only four years and two months old, but he is enjoying going and is always happy to get there, so this is good. He went to nursery school so he is used to a long day without Mum and Dad, I think this helped. Also he has started school with a good friend of his and also knows some of the other children from nursery. He certainly looks happy enough.

Another trip to Germany.

The trip to Germany was very tiring, especially as I only had the chemotherapy the day before. The Prof. says that the bit of mesothelioma he treated is ‘all but stable’, so this is good news. It means the cancer is wounded and will therefore hopefully react more to the continuing chemotherapy. He treated another area this time and says he will do one more treatment too. This is what he said last time we went to see him.

We went to see my little sister on Sunday. I was feeling quite rough but really wanted to see her. I was surprised that she was looking much better than I was expecting. It turns out that she had a calcium build up in her blood that was making her incoherent. It was caused by the bone tumours leeching out the calcium. She had to go into hospital to have it all flushed out from her blood and she feels much better for it. However, it is something that should have been spotted days earlier.

I was completely exhausted yesterday and spent most of the day sleeping on and off. Germany and my sister’s visit took it out of me more than I realised.

I had my blood tests done yesterday to see if they were good enough for me to continue with the second chemo tablet of this second session. I have had the phone call to say I can go ahead and take the chemotherapy, so good news.

I can feel tightness in my chest where the tumours are and hope this is because of damage to the cancer by the chemotherapy drugs. I am also very breathless; this seems to have worsened with the chemotherapy.

I am now over a month into my four to eight month prognosis and hope the treatment is extending this for me. My eGFR seems to be holding out at about twenty four and I hope upon hope that it improves to thirty, as I will then be eligible to enter drug trials and there are a few showing some promise.

Another Meso warrior has just passed peacefully away and I feel for her family who have fought the fight with her. She was very brave and fought right to the end, as I intend to do.

I thank you all for the tremendous support you are giving my family and me.