Holloween

I have just come back from swimming, and yes I did remember my costume this time, I always feel virtuous afterwards.

My lovely husband Rob read my blogs yesterday and said he was hurt, as I hadn't mentioned how supportive he is. I feel guilty for this but it is only because I feel so safe, comfortable and loved by him that I am able to relax and not have to worry about how he is towards me. Rob has pretty much taken over the household chores and is a rock in my life. He is always alert to how I am and accompanies me on everything I do. This would be a different type of trauma for me if he were not around. I do worry about him, as this is as hard for him and my family as it is for me. He says he feels helpless but for me he is doing all he possibly could and I love him.

I am having some good feedback and being introduced to some sufferers and carers who are all going through the same thing. It is frightening how many people are getting this disease and that they are all having to pay to have treatment abroad when we could easily do it here as we do for other cancers. It is not a difficult procedure and would benefit those that do not have the funds.

I am going to bring the subject of chemoembolization at my appointment at the Royal Marsden. I wonder if they would be interested?

Today's photo is of some of the old cars that are around in Cuba. When they kicked the Americans out they left all their old cars and the Cubans still keep them going. Some are literally held together with duck tape and string, but they are lovely to see.

Each time I have chemotherapy my navel gets sore, has anyone else heard of this happening?

Tonight is Holloween and we get quite a lot of 'trick or treater's' calling, especially the youngsters from our close, they are so cute. I always wear a scary mask and make them jump when I answer the door.
I have to be careful though as one year a three year old knocked and when I opened the door with a big roar he ran off crying. I did feel guilty, but it was very funny, even his mum laughed which didn't help.

Our house is 20 years old and starting to show its age. We have inset light fittings upstairs that are expiring one by one. They just pop out of the ceiling and collapse. I have my friend Nick, who is a builder, coming to assess them today. We have about six of these lights and they started misbehaving straight after the roof laggers finished lagging out attic. Hmmm.

Kicking and screaming

The one thing about having a terminal disease is that you don't want to give in to it so I will, when the time comes, go out kicking and screaming. With this in mind it is always good to have a plan B if the current plan is not working. I hope upon hope that my current treatment does work and will find out if it does soon enough.

Meanwhile I have made noises to my Oncologist Dr. Riyaz Shah in Maidstone about the next step. He is very supportive and suggests that I have a talk with the Drugs Trial guys at the Royal Marsden Hospital in Sutton, Surrey. Dr Shah has got me my first appointment with them for the 6th November which was very quick. Both Dr Shah and my amazing Macmillan Nurse Sandra Wakelin have been so very supportive, they both always mention the positives in my condition and I feel blessed to have such good people routing for me.

Actually, apart from one grumpy Medic who I will excuse as being highly stressed at the time, I have found everybody I have come in contact with absolutely encouraging and willing to see me whenever I want to be seen, which is comforting if I am worried. Also they are more than willing to answer my numerous questions with infinite patience and concern. This includes The Prof.and his wonderful team in Frankfurt.

This is a picture I took in my garden last summer, the Bee posed obligingly for me!

To look at me you wouldn't know that I was ill, I look as fit as anyone else. The main problem at the moment is breathlessness, which catches me out every time if I have to go upstairs or up a slope. I can actually walk well on the flat and try a do an hour-long walk most days. Also I go swimming (when I remember my costume) maybe two or three times a month. It is meant to be weekly and I go with a couple of friends, but if they can't go I am not motivated or keen enough to go alone, so I don't, however we are going this Saturday.

We are also going to supper on Saturday to some very good friends and will meet up with other friends that we haven't seen for some years, so that will be nice.

My foray into currency speculation has backfired, the Euro has got weaker against the pound and I could have got a better rate if I had waited. Still, it is all a learning curve and I expect that over the whole Frankfurt treatment time I will come out about even on the rates; and we are only talking about a few pounds each time anyway.

Robert, my husband went to watch Arsenal play Liverpool last night and my son Stephen invited me over for a curry. I had a great time playing with Joseph, my grandson, and the food was good. Unfortunately Stephen's tonsils started to swell and get sore so I left as my immune system is down due to the Chemo in the treatment I am having. Still, it was a good evening. Also Arsenal won, so Rob was very happy.

I don't know if I have mentioned this but the drug trial I was on caused most of my hair to fall out. My hair is fairly straight normally so it was a surprise to find that the new hair has grown very curly. I now have a head of ringlets!!!. I don't know if it will stay curly or go straight again.

My friend Debbie Brewer

I had quite a scare last night. Debbie brewer, who put me onto the treatment of chemoembolization, left a message on face-book to say that the mesothelioma had spread to her chemoembolization wound site and that she thought this was as a result of the treatment.

I am so sorry for Debbie that this has happened and also immediately got into a panic that the same would happen to me. Needless to say I had a pretty tough night worrying about it.

The good news this morning though is that the Prof. thinks that Debbie's problem is 'most likely it is a general lymphatic problem, there is no way for the meso to track through the vessel, because we never touched the cancer'. So we are keeping our fingers crossed and hoping that the enlarged lymph node at the wound site is just responding to infection and is hopefully nothing too serious for her.

Debbie has been a real inspiration to me and others stricken with this dreadful disease, and we all wish her well for a long long time to come.

I have to say I was quite worried and was turning over in my mind whether I would continue with the treatment. Of course I really have no choice but to continue as nothing else is on offer. It is good to know though that I don't have to worry now.

I am getting a bit nervous about my second trip to Frankfurt, as this is when I will find out if the treatment is working for me. Having just done another chemo drug trial that didn't work has knocked my confidence a bit.

This is a picture I took of the sunset from our hotel balcony in Havana, Cuba. I like to add a picture each time to break up the rhetoric a bit.

I just got a good price for the Euro for our December trip, which will be the third. By buying ahead I can get a speculative price by taking a chance that the rate won't change too much. Fingers crossed!

We have booked a holiday, we are going on a Mediterranean cruise visiting Madeira, Morocco and the Canary Islands and it should still be fairly warm too. We have to book pretty much last minute for holidays, as the future is a bit uncertain for me. Still, it is a good excuse to keep having short holidays and we also benefit with late booking prices, so an extra bonus for us!

I actually bought our nuts, yes nuts, ( you read correctly) for Christmas today as we had real trouble getting any near Christmas last year. All we have to do now is to NOT eat them now and then have to buy more!

Chemoembolization

Hello again.
Chemoembolization is a procedure where they put a tube into the femoral artery in the groin and feed it up to the vein feeding a part of the cancer. They then squirt into the vein a mix of a type of plastic mixed with chemotherapy drugs. This temporarily blocks the blood supply to that part of the cancer and starves it of oxygen, then the chemo drug gets to work to damage the cancer further.
This is done once to each part of the cancer hopefully getting to most of it. Then it is 'wait and see' to find out if the cancer becomes stable or even shrinks for a while.
This will give me a bit more time and increase the chance of still being here if they eventually find a cure. This treatment, funds permitting, can be repeated when the cancer starts to grow again.
Prof. Dr. Thomas Vogl has been doing this treatment for lung cancer in a trial for 3 years so far, the trial has another 2 years to go. Of the 500 or so patients he is treating about 22 have mesothelioma, and of these about 70% have responded well with either static disease or shrinkage.
I will take my chances with odds like this. At least this treatment gives me some hope, where there is none with conventional treatment.

I found out about Prof. Dr. Thomas Vogl through searching Google and coming across Debbie Brewer, who has successfully had this treatment. What an inspiration she is to like sufferers, she fights and is very vocal in helping the cause. She also runs a blog, have a look, it is on this link http://www.mymeso.org/tags/debbie-brewer/

We offer Chemoembolization in this country for kidney or liver cancer but not for mesothelioma. I don't know why, as this treatment seems to have a good success rate, certainly better than the current UK treatment on offer. There was a petition sent to the government and their response was useless, see it on this link http://www.number10.gov.uk/Page20326 .
This country considers mesothelioma as an old persons disease so doesn't warrant it high enough for putting money into it.
If you want to know more here is a question and answer session from Prof Dr. Vogl http://www.mesotheliomacom-news.com/asbestos/mesotheliomanews/535-aq26awithdrvoglaboutmeso.html

Mesothelioma is caused by asbestos contact, which has been known to cause problems for over a 100 years, but still they condoned its use, in fact encouraged it in the 40's - 70's.

I can't really complain as I have had quite a good life. I am married with three wonderful children who are all so supporting of everything I am trying to do. They also all offered to re-mortgage or give me funds to help pay for the treatment. My sister and her son have also offered to help; what a great family I have. I also have a lot of support from my friends who have all been great, it is a big comfort knowing that others care.

I have had some pain in the area of my lung that had the first treatment, this is hopefully a good thing and shows that the procedure is having some effect, or it could just be my imagination!.
I will know on my next visit, finger crossed!

Christmas Fair

Thank you for the positive remarks about my blog. Today has been good, I went swimming with friends but forgot my swimsuit (chemo brain) so we just sat and had coffee and chatter, very enjoyable. Trouble is I didn't as feel as virtuous as I would have had we swum. Still I have packed my costume now for next week!

We went to the WI Christmas craft fair and spent some money on one or two nice things, plus some Christmas cards from our local charity 'Gamble', who have built and finance a school in the Gambia. Do look at their web site, they are a charity that spends every penny raised on the school.
http://www.gam-ble.co.uk/..
l also I won a raffle prize, yet to be delivered as we had left by then. It is some sort of shower gel or something... We walked there at a brisk pace to get maximum exercise given the swimming fiasco and the fact that I wouldn't have time for a long walk today.

Spent the afternoon in Maidstone with my lovely daughter Emily and did a bit of retail therapy and stopped for coffee and more chatter; very nice.

I had a phone call from my 2nd cousin Chris Lewis; what a lovely young man he is. I haven't spoken to him for about ten years but it was as if we had only spoken last week. I always had a soft spot for him.

We have spent some time working out the best way to buy Euros as we have to pay ourselves for the treatment in Germany. It is amazing how the rate varies according to whom you speak to. We have found a couple of good online suppliers who give near on commercial rates and this will save quite a bit over the course of treatments.

We go back to Frankfurt on the 15th November for treatment on the 16th, the air fares and the Hotel are already booked. The trouble with Frankfurt is that they have huge exhibition centres and people come from all over the world to them. This means that on exhibition weeks the hotels hike their prices by 300%+ and it gets difficult to find somewhere near to the hospital cheap enough.
The Professor and the staff at the hospital are all very sweet and make me feel comfortable. The hotel we stay at is on the other side of the Maine River and is a twenty-minute walk away; very handy.

We got the train last time to come home from Frankfurt main station but got on the wrong one for the airport. The people on the train were very kind and put us right. One charming lady even accompanied us back to the train station and took us to the correct platform. How nice and friendly the people are in Frankfurt and they all seemed to speak English too.

History, my first blog

I am going through that horrible stage of cancer when you know it is going to kill you but you want to do anything to delay the inevitable. I have Mesothelioma, a cancer caused by asbestos. There is no cure and no way of avoiding death.

I have had a pleurectomy done by Karen Harrison-Phipps, my surgeon at Guys Hospital in London. What an amazing lady she is.

I have had main line chemotherapy, Cisplatin and Pemetrexed. This halted the growth for a few months.

I have been on a drug trial for Sorafenib which made most of my hair fall out but unfortunately didn't work for me..

Now I am undergoing Chemoembolization with Prof. Dr. Thomas Vogl in Frankfurt who says he can help me. This is not a cure but may delay growth or even shrink the tumours for a while.

I am interested in anything anyone can tell me about the disease that may help me.

I did the Cancer Research Run for Life in May and raised an amazing £4500.00 with my team of six friends who were great. I would like to still be fit enough next May to do the race again. I say race, but I didn't run but walked the whole course. The whole team crossed the line together. An amazing experience.