More Chemotherapy and a Hickman Line

I got the results of my CT scan on the 29th October and the cancer is getting worse again. This time the main problem seems to be in my liver, although the tumours have grown in other areas as well. Earlier in the year I had decided not to have any more chemotherapy but, after hearing what would happen if I didn't have it and about the improvements in the chemotherapy itself, I decided to go ahead. After all, if the side effects are really bad I can always change my mind (again!)

According to the consultant, if I don't have the chemo I'll be very ill within 2 months and dead within 6. Also, although I'll be having the same chemo drugs (Carboplatin and Paclitaxel), they will be given in a different way. Instead of once every 3 weeks for 6 weeks (one dose = 1 cycle) it will be once every week for 18 weeks (3 doses = 1 cycle). This means the doses will be smaller, and hopefully that means the side effects will not be as bad.

I have to admit I took the news badly. I don't know why. I knew what they were going to say, and the consultant seemed very positive about it working. Apparently this way of having the chemotherapy has had some very good results. Still, it's a hard choice to make and in the end only I could make it.

I'm feeling much better now and more optimistic. Hopefully the chemo won't be as bad and last Thursday I had a Hickman line  (also know as a central line) put in. This will be a great help as my veins are terrible. They never really recovered from the first lot of chemo I had, and the nurses have terrible trouble taking blood and putting needles in for chemo, CT scans etc. The Hickman line will hopefully save a lot of time and make things a lot easier.

I'm back in clinic on the 15th November and on the 19th I start the chemotherapy (fingers crossed all goes well).

Victoria Wood As Seen On TV - Today In Hospital

Luckily not all hospitals are like this:

The Eve Appeal

Chemo?

I went for a CT Scan on Thursday to find out what is going on  inside.  I get the results in a couple of weeks and then have to decide whether or not to have more chemotherapy.  I put the decision off last time I was at clinic, but I don't think I am going to be able to get away with that again!

I had decided earlier this year not to have anymore chemo, but things have changed a bit since then.  The main difference is my bowel blockage has been sorted out and, although, the tumours are growing back in that area, they are not causing the same problems.

Quality of life is my main concern.  I always feel very ill when having chemo and earlier this year I was told that it would only add a few months to my life.  It was a hard decision to make, and I was feeling very ill anyway, but in the end I decided that it wasn't worth it.

Anyway, before I can make a decision this time, I will need to know how much longer would or could be added to my life and how ill the chemo would make me feel.  I'll let you know my decision when I make it!

Eating Out, Bowel Surgery and Facebook

For someone who is home all day I really don't seem to get much done.  This is mostly because I am so tired and rarely get out of bed before lunchtime. Today, however, I was up before noon, and managed to fit quite a lot into my day (for me anyway!)

The main reason for my early rise(!) was to spend some time with my mum.  We saw a film (Made in Dagenham) and had a meal out.  Usually when I go out with my mum it's to the hospital, so it was great to do something more enjoyable. 

I love eating out, but since I had a bowel blockage earlier this year I've not been able to enjoy, or indeed eat, food as much.  Not long after I finished my second course of chemotherapy the tumours started growing back around my stomach and became entwined with my intestine.  To start with this meant that I was in a lot of pain and could only eat small amounts or I was very sick, but after a couple of months I couldn't eat anything and if I did eat, or drink, something it just came back up. I couldn't even take my tablets.  I went into hospital, but as I had decided to stop my third course of chemotherapy after the 3rd cycle (it wasn't working and was making me very ill) they decided to send me to St Gemma's (a local hospice) where they could manage my sickness and pain better.

While I was there I saw three surgeons about having an operation to sort out the problem, but decided against it as could have made things worse.  However, the decision to have surgery was taken out of my hands when two days later my bowel burst and I had to have emergency surgery.  I nearly died several times during and after surgery, but it turned out to be a complete success and not only did they manage to take out the diseased part of my bowel without having to fit a stoma, they also took out all the tumours.  In the end my bowel bursting turned out to be a blessing in disguise.  I had been told that I would only have a few months to live, maybe even weeks, but here I am 5 months later alive and well and telling you all the gory details!  I still sometimes feel uncomfortable after eating (like today) but that is a very small price to pay.

On a lighter note I also managed to catch up on my Facebook correspondence.  I find it so awkward replying to people I haven't seen in years.  They tell me about their wives/husbands and children and I reply and tell them about my cancer.  It's not that I get upset telling people about it - it's more that I worry I'm upsetting them.  I've tried different ways of telling people, but none of them are easy - maybe I should just direct people to this blog!

Nantwich Food Festival

I had a lovely weekend at my brother's in Nantwich.  I got to see my nieces, which is always great, and we visited the Nantwich Food Festival.  It was the first time I had been and I must say that I enjoyed it very much!  

There were loads of stalls and lots of yummy things to sample, from cheeses to chocolate.  We also went to a champagne tasting - I probably should have had something to eat beforehand (I'm not really a breakfast person and we hadn't had lunch yet)  Anyway, it was a good job I had decided to use my wheelchair (the glasses were a lot fuller than I thought they would be!)


I don't really like using my wheelchair, but because I was still in a bit of pain from my trip to Norfolk and because there was no way I would be able to walk around the whole festival, even using my stick, I decided to use it, and I'm glad I did.  It's the day after, and although I am very tired (I've spent the whole day in bed) and a bit stiff, I'm not in nearly as much pain as I normally am after a day out, so it was definitely worth it.

Anyway, I think I am going to use this week to recuperate before I embark on any more weekend aways or days out!

Tired and in Pain (Again!)

I managed to get to Norfolk and had a lovely couple of days.  I got back early Thursday evening, tired, but ok apart from that.  However, since then I have been in so much pain.  I have basically spent the last 3 days in bed.  I'm not as tired now, but I'm still in quite a lot of pain.

That's the problem with doing anything.  I spend the next few days exhausted and in loads of pain, not able to do anything.  I was hoping to go to an open day at St Gemma's in Leeds on Friday, but unfortunately I had to miss it.  St Gemma's is a hospice and I spent some time there earlier this year.  They also run a day hospice and I was hoping to go for a look around as I have been thinking of attending. 

When going into a hospice was first mentioned to me I was very unsure.  I know people go into hospices for all sorts of reasons (pain management, rest etc), but I hate being in hospital and I thought it would be very similar.  People told me how lovely it was, but I just didn't believe them.  However, when I got there I was surprised by how nice it was.  I had a large room on the ground floor.  French windows opened up onto a patio area with a table and chairs (each room has their own) and a lovely view of the beautiful garden.  The food was a lot better than in hospital and there was a much bigger choice. The staff were very friendly and helpful, and my stay there was just what I needed (unfortunately it was cut short when my bowel burst and I had to be rushed to St James's hospital for an operation!)

If anyone wants to donate to St Gemma's there are various ways of doing this, check out their website for more info on how to support them.

Going Away (Hopefully!)

Tomorrow I'm going away for a couple of nights, just a short break to Norfolk. At least I hope I am. Recently, every time I plan to go away, I end up back in hospital, or I'm unable to go because of some other medical problem.

I was planning on going to Norfolk, Devon and Cornwall last month, but I had had some problems with my breathing and was told the day before I was due to go that I had fluid on my chest.  I was still determined to go, and actually set off, but halfway to Norfolk I decided that it was too risky and came home.  A couple of days later, as my breathing was a lot worse, I ended up in hospital for a couple of nights having the fluid drained - not my idea of a short break! Anyway, I feel ok now so hopefully everything will go okay this time.

Going on holiday when you have cancer is not easy. For a start there is the problem of health insurance.  I can't get any, and even if you can it is extremely expensive. I think there are some companies that offer insurance to people with cancer - Macmillan Cancer Support should be able to help you find them.  I just get insurance for luggage through the Post Office.

The most important thing you needs is your EHIC (European Health Insurance Card) which is free and you can apply for it online.  This mean that you can get 'state-provided healthcare in all European Economic Area (EEA) countries and Switzerland at a reduced cost or sometimes free of charge.'   Although you still have to be careful.  I've been told that France and Spain are ok to go to in regard to healthcare (getting it and the standard), but other countries might not be so good.

I was planning on going to Spain earlier this year for some sun and rest after finishing chemo last October.  Unfortunately that had to be cancelled as that particular lot of chemo didn't work well and I needed more.

Anyway, hopefully this time I will actually make it all the way to Norfolk and won't have to worry about hospitals and healthcare!

The Eve Appeal

Yesterday I added a list of useful websites to this blog.  As a result of this I had a look at these websites for the first time in quite a while, in particular The Eve Appeal website.  The Eve Appeal concentrates on gynaecological cancer and raises awareness, gives information and fundraises for research.  You can make a donation on their website and they also have an online shop - All for Eve that sells make-up and bath and body products.

According to The Eve Appeal website, in the UK '18,000 women are diagnosed and nearly 7,500 women die every year'  from gynaecological cancer, but 'awareness and funding of gynaecological cancers remains low.' Personally I have found this to be too true. I was diagnosed wrongly for many years and had no idea what the symptoms were for ovarian cancer. If you want to find out what symptoms to look for in regard to gynaecological cancer, take a look at the information The Eve Appeal gives on their website.

Hello

First off I should say that I don't have ovarian cancer. I actually have primary peritoneal cancer, which is very similar to ovarian cancer and the treatment is the same. Primary peritoneal cancer is very rare (especially in someone so 'young' as me) and most people (including the doctors) call it ovarian cancer or ovarian type cancer.

I found out in September 2006 that I had cancer, although I later discovered I had had it for many years, and by this time it was stage 4. My life has changed a lot in the last 4 years, but not just in a bad way.

I would like this blog to help people with cancer, whatever type they have, and hope my stories and thoughts can make life a little easier for them.