May appointments 2011

Saw the Kidney consultant on Friday and he tells me my kidneys may not improve very much more which means I won’t be able to participate in any medical trials. However, he has put me on bicarbonate of soda capsules as they neutralise the acids in the blood which often helps the kidneys. He doesn’t want to see me for 2 – 3 months, so is not very worried about me, which is good. My eGFR went up from 16 to 18, a very slight improvement.


The Radiotherapist thinks the new lumps in my side may not be meosothelioma, but will keep a close eye on me and see me again in four weeks. I think the lumps are mesothelioma as they feel exactly the same as the ones on my back. The radiotherapy doesn’t seem to have shrunk the lumps, but hopefully has put the brakes on them for a while. The radiotherapist says he can treat them again but not yet.


We have booked a few days holiday in Devon early July and will try and get some short breaks in during this period of no treatment.

I feel very sad for a warrior who has passed away, she was a lovely person and I met her in October at the Mesothelioma UK conference. I send my condolences to her family.


There was a local mesothelioma conference in Maidstone last week where I met Mavis, who has meso too. It is lovely to put faces to names.

My lovely little Sister has decided not to have aggressive chemo as it won’t prolong her life by much and feels that quality of life is better than feeling ill doing chemo. She is very brave and we all respect her decision, hard though it is.


My photo today is of young Joseph, our grandson, made up as Spiderman. He loves to dress up.

Not good news.

Just a short blog as the news is not good.

Not a good day yesterday, my eGFR has gone down yet again to 16 and my creatinine up to 265. This is bad news because it means my kidneys are struggling again and going back into kidney failure. I am so disappointed.

Also my poor sister’s news is not good, her cancer has spread to her pancreas now and her prognosis is very poor. This has upset us all and we are all routing for her. She can go on a different chemo, as the one she was one had stopped working. Firstly she has to get fitter which may take a couple of weeks. Her bloods dropped right down so she had to have a 6 hour transfusion yesterday.

My sister in law is now home recovering from a breast cancer operation and is feeling quite bright. I was hoping to go and see her today but am too emotional with my sister’s news. We are going to see my sister tomorrow though.

I suppose as we are all living longer these other things will start to take over.

Wow, I wasn't expecting this.

Well, I wasn’t expecting such good news. Most of my mesothelioma hasn’t grown and the rest has grown but only a small amount in six months. This means the Prof. has slowed everything right down and done a fantastic job. Therefore I do not need to go on any chemotherapy for the time being, which means I will be as fit as is possible for the Cancer research Race for Life in July! It also means we can think of a little holiday again. All in all this is great news.

I will have another scan in three months but can call the Oncologist and my wonderful nurse meantime if I am worried about progression or in pain.

The sickness is now properly controlled with medication, and my breathing with Seritide spray, so all in all an improved quality of life at the moment.

My sister is having a really rough time and has had to go back on steroids as she is virtually unable to walk. She is having such a bad time but is a real fighter. I have such admiration for her and hope to see her in a few days if she is up to a visit.

I am ten pin bowling again tonight in the league for the first time in nearly six months,; I will be bad but enthusiastic, but my team are very, very understanding. We were bottom of the league last season, so we hope to do better this time.



My photo today is of my darling grandson Jo, taken a few months ago, I think.

And on and on......

I had my CT scan the following day in the end so not too long a delay and the results will be in time for my oncology appointment with Dr. Shah on the 10th May. I have also had the three radiotherapy treatments and have noticed that the lump in my back appears to have shrunk, which is great.

I am seriously thinking of delaying my chemo start for a couple of months so I will feel better to do the Race for Life for Cancer research in July and will feel fitter, the better to handle the side effects. It all depends on how the CT scan reads, if it shows I am still stable I will delay, but if it shows progression I will start straight away and struggle more with the race. After all, I want to be here next year to do the race again. I have done a race for each of the three years I have survived this devastating disease, and intend to do a few more races yet.

My poor sister is still suffering the results of all the steroids she has had to endure. She is unable to walk so is very much housebound for the time being. It is her birthday this week, another milestone for her cancer too. I have given her a voucher for the health suite she likes to use as their massages help her feel a bit better.

I landed up in hospital yet again, this time because my vomit was black (sorry to the squeamish). It seems I have had a stomach bleed, but my bloods are no worse so they think and hope it was a one off. Meanwhile my blood pressure has gone way up high and I need to get it sorted, if I can get a doctor’s appointment, which after 50 phone calls I have been unable to do.

We had our beautiful grandson Joseph for the afternoon on Monday and we had a wonderful time walking, eating icecream and playing poo sticks off the bridges.

This is Joseph (in blue) enthralled watching a show at his nursery school.