Wednesday, 31 August 2011

After the first chemotherapy cycle.

Well, one month of my 4, 6,8 month prognosis has now gone and I don’t feel any worse than I did then. In fact I have more energy and am more comfortable. Whether this is down to the Professor’s treatment or not I don’t know. I certainly look better than I did a month ago. I am seeing the Professor again next week for another embolisation.

After the first complete cycle of chemo I have had a few days of feeling quite bad, but am beginning to feel better now. I have a week off chemotherapy now to gather my strength and enjoy myself.

The first three days after taking the chemo drug are not too bad because I am high on the steroids they give, but day’s four to six can be quite bad, in as much as I am totally exhausted, and my head is in a continual fog. It is quite hard to explain exactly how I feel then. I do get quite emotional at this time too.

This chemo drug, Vinorelbine, doesn’t seem to make me sick, which is a huge bonus. It means I can do other things when I feel like it instead of being tied to home. I try to keep busy the first three days as this helps to distract from the treatment and I have the energy, courtesy of the steroids.

The metallic salty taste in my mouth is still there, it comes on day two of treatment. After the first tablet it went in five days, but has hung around after the second, for longer. It makes food a bit tasteless, but not impossible to eat. The steroids also improve the appetite considerably so I indulge to boost my weight for the time when eating is more difficult.

Our Hospice Nurse Sandra asked my surgeon, Karen Harrison-Phipps, about the possibility of more surgery. Karen looked at my scans and said that the mesothelioma was covering vital arteries and it would be far too dangerous to operate. She likened it to a bucket of dried cement with arteries running through and trying to chip away blindly without damaging the blood vessels. It would be an impossible job. It was worth asking the question though.

I am thinking a lot about other meso warriors fighting at various stages of the disease. We get so much support from everyone and it really helps us to fight, even though we know there is no cure and it is eventually a losing battle. I was shocked to hear that a young American, 23 years old, has contracted the disease and can’t believe how cruel this is for him and his family.

My husband Rob has been such a tower of strength, without his support and help this fight would be so much harder, so I am in awe of my friend Debbie Brewer and others who are fighting this on their own, they are so brave.

I hope my blog is helpful to anyone fighting meso, it seems that it is read in over fifty countries.
How amazing, the power of the internet.

All the positivity of everyone makes me feel I am not fighting this alone, so thank you so much for it.

Today’s picture is of Rob and grandson Joe taken about a year ago, they look so happy.

Tuesday, 23 August 2011

Second part of first chemo session.

I had my blood test yesterday and had to go to the Hospital today for a review of the chemo side effects' and to find out if I will be able to continue with the second dose of the first chemotherapy session. The news was good. My bloods were OK and my liver function had improved. I didn’t know my liver function was compromised until today.

The chemotherapy drug Vinorelbine is metabolised through the liver so the function needs to be good to clear it out of my system when it has done its work.

I will take the chemo drug tomorrow and hope for the best.

Having no sickness, so far, is a huge bonus for me after months and months of continually being sick. I have to take a strong anti sickness pill half an hour before the chemo drug to stop my stomach rejecting it, so will start early in the morning.

I do feel tightness in my chest where I have the cancer and hope this means that 'something' is happening. I have all my fingers and toes crossed that my bloods continue to be fine so I can continue with the therapy. Side effects so far seem to be bearable, just a fuzzy head, a bit shaky, emotional and breathlessness; all of which I can manage, and they are not stopping me from carrying on with my life as normal. I try to get a walk each day and feel better for it.

We are off to Germany again in two weeks for another embolisation which, I hope, will further damage the tumours. This will probably be my last visit there unless something dramatic happened to improve things for me.

We have had a wonderful week and weekend. It was our 36th wedding anniversary and our children have been amazing. We were given a beautiful painted picture of Rob and I at our wedding, from Emily and Pete; a lovely lunch in Christopher and Amy’s garden, and a beautiful Italian Sunday meal with Stephen and Hannah in the Terracotta Restaurant, Cranbrook. Our grandson, Joseph, ate a huge plate of mussels and he is only four years old. He has mature taste buds, he loves garlic bread too.

The picture today is of Joseph concentrating on getting the mussels out using an empty shell. He was quite skillful, bless him.

Wednesday, 17 August 2011

First day of chemotherapy.

After a short hiccup I have taken my first Vinorelbine chemotherapy capsule. I have been on a low dose steroid tablet for three weeks and was told to take omeprazole half an hour before the steroid to protect the stomach. Whilst on the chemo drug I have to take three steroid tablets over the course of the day. I duly took the omeprazole and steroid whilst waiting for Maidstone Hospital Oncology pharmacy to telephone me to say if my blood test yesterday was good enough to begin the chemo regime. Whilst waiting for the call I read the leaflet that came with the chemo drug only for it to say ‘don’t take omeprazole with it. I had to call the chemo 24hour helpline nurse to ask what I should do. This resulted in her having to call Oncology pharmacy, them to call in another chemo nurse and her to call the manufacturer. It seems know one knew. The Manufacturer said they thought it was a problem in the early days but have now excluded it so I would be okay to start the drug.

This was a relief as I had geared myself up to starting it today.
I had to take a strong ant sickness tablet, Ondansetron 8 mg, half an hour before the chemo drug and metocopramide anti sickness tablets for four days, then as and when required.

Two hours later and I feel fine and I am going ten pin bowling with a friend this afternoon. So, fingers crossed I don’t get nauseous.

The side effects can be blood deterioration, nausea, tingling hands and feet, bruising or bleeding, sore mouth, constipation or diarrhoea, anaemia, lowered resistance to infection, tiredness, some hair loss and exhaustion. Some people get no side effects others get a few and others get a lot. Fingers crossed I get as few as possible. At least I feel that I am doing something positive to help combat this mesothelioma.

Tuesday, 16 August 2011

Next phase, Vinorelbine chemotherapy.

I have seen my Oncologist today. The radiation blood test I had for the ADAM trial is better than I thought but not good enough for the trial. I was expecting this and was not surprised, and had decided any way, that the trial is just that, a trial and not yet proved. I therefore favoured the Vinorelbine chemotherapy course as, although only one digit chance, i.e. less than 10% that was better than no chance.

They were going to put me on the chemo drug today but decided that I had better have a proper blood count first as the chemo will effect my bloods. They wanted me to go back to hospital again tomorrow to pick up the medicines, but I persuaded them to let me have them today and they will telephone me tomorrow morning to give me the go ahead, or not. My blood count has been a bit low but should be alright, so I am not expecting a problem. Watch this space!

I have lately been getting more uncomfortable, particularly in my back so I was very keen to get started as soon as possible, so it everything is working out well.

I am going to feel pretty rough with the treatment, but I am now through month one of my four month prognoses so can’t wait to get started with the chemo.

I need to take one capsule tomorrow, then one on day eight, then a week’s break. The cycle is three weeks and my Oncologist is talking about 4 – 6 cycles if it is working. He will x-ray and monitor me and then give a CT scan after two or three cycles. I will be keeping everything crossed for a positive outcome. At least I am still fighting and feeling positive for now.

My amazing MacMillan nurse is going to ask my Surgeon Karen Harrison-Phipps about the possibility of more de-bulking surgery. I asked, when Karen operated on me in 2008 what the possibility of more surgery was and she said’ Never say never’ so I thought it was worth asking the question. It is not usual in this country to do more surgery but they do in the USA, with some positive results too.

It is our 36th wedding anniversary today and we are going out for a nice meal this evening. Let’s hope I am still around for our 37th. I will jolly well do my best to be, prognosis or not.

I have been thinking and worrying about my fellow Meso warriors who are also going through this dreadful experience. I wish them all luck and good results.

Thank you all so much for your best wishes and positive comments; they are so welcome for us all. I really do have an army of supporters around me!

Sunday, 7 August 2011

An outside chance in Germany

I had disappointing, but not totally unexpected, news from the Prof. He said he has only given me embolisation, without any chemo drugs because of my kidneys. He says he is willing to do one moretreatment, to make me more comfortable. He is not now talking about being able to ‘help’, only make me 'more comfortable'.

My oncologist has offered me Vinorelbine chemo therapy, as it will not damage my kidneys further, and I will know if it has had any effect in two months. But he thinks it will only give me a one digit chance of shrinking the tumours. My problem seems to be around the central heart area where it is aggressive and threatening the heart. I think I will give it a try and hope the emobolisation has weakened the tumour enough to give the drug a fair chance to work better.

I have contacted the Prof. since my return to the UK and asked him if he thinks another embolisation and me taking Vinorelbine would give me some positive benefit. He says yes, and vinorelbine is a good idea. He replies almost instantly, which is really good.

I realise this is now the end game, but whilst there is fight in me I won’t give up. My family are all behind me in this too.

I met up in Germany with Debbie Brewer and a new meso warrior called Richard. Debbie has been told her tumours have shrunk by 2 – 3 %. This is good news to hear and took the sting out of the tail for me.

Thank you all so much for your kind support; it makes me feel I have an army on my side! In all of this I have made some very good and kind friends.

Here is a picture of Alison, Richard, Debbie, Myself and my darling Rob taken at the station the day before our treatments.