Thursday 31 October

Thanks for taking the time to visit my JustGiving page.

What I am going to do over the next 18 weeks is to share the experience of having chemotherapy with you. I want everyone to know that it's possible to live well with cancer despite the gruelling treatments. I want to demystify cancer and chemotherapy. 

I'm going to post up every third week the high spots, the goals, and the achievements. They might be small compared to those of you who are able to enjoy full health but they're nontheless important to me. I reckon I can keep you amused and informed. Keep returning to my blog and share the journey with me. Let's own cancer and chemotherapy. Let's make it work for us. It might be a tough journey but I'd like to travel with all my friends, family and supporters and show that it's possible to get through it and continue to live a full and rich life. 

I'm raising funds for Target Ovarian Cancer because this London-based charity is lobbying for fairer access to cancer drugs across the UK. They are working with our MPs and our Government to bring justice to patients in Wales and they are working actively across the UK distributing awareness-raising leaflets, organising events, and supporting research that will one day find a cure for this disease. 

My fundraising idea is a personal tribute to this charity because without them I would not be receiving Avastin today. You can read why I had to abandon treatment in Wales by visiting the Wales Online website.   http://www.walesonline.co.uk/news/wales-news/welsh-cancer-patient-rents-london-6264574 

Please visit my page regularly to see how I'm getting on. I shan't be losing my sense of humour yet and I hope the personal journey helps you understand what's going on and keep in touch. Please make a small contribution when you read my account. It doesn't have to be a lot - but it will make a difference to the work Target can do to help us in Wales, and the other devolved nations. 

Before I start to tell you about my treatment I'd like to mention the symptoms of this cancer. One in 50 women will get Ovarian Cancer but few know what signs to look for and many women think it can be detected by a cervical smear. A cervical smear does not detect ovarian cancer. There is no effective screening, and women over 50 years are most at risk. Watch out for one or more of the following: loss of appetite, tiredness, persistent tummy bloating, discomfort, and changes to bowel/urinary habits. If you think you are at risk check out the symptoms at http://www.targetovariancancer.org.uk and see a doctor. They can offer a blood test called a CA125 and whilst this is not conclusive in all women it can help to identify the cancer at an early stage. Early detection and diagnosis saves lives. 

My prescription is Carbo-Platin, Gemcitibane, and Avastin. The first two are chemotherapy drugs, and Avastin is an angiogenesis inhibitor. It's going to slow down the growth of tumours by blocking their blood supply. Whoo hoo!

My first treatment was at the Royal Marsden on Tuesday 29 October. It took about 5 hours and a very pleasant experience too as you get to sit in a nice comfy reclining chair, there's a screen with TV, Radio, internet and even an internal phone to call people. Spent ages wondering who I could call in the Royal Marsden. 

Lovely ladies with very posh Fulham accents came round with sandwiches, yoghurt, drinks and snacks. Mags there are also top-notch. 

I'm getting known at the RM 'cos I cycle there on my Brompton Folding Bike. I get the cheapest bus I can from Cardiff to London and then 'On Yer Bike' for me!. I get steroids in with the chemotherapy and they're like Speed! Came out of hospital at 2:30 p.m. last Tuesday ready for a serious bit of retail therapy - and there's the King's Road and Sloane Square on the doorstep !!

Honestly Chemo doesn't have to be too awful though some suffer, don't misunderstand that. 

In the coming weeks I've promised myself a tour of the museums in South Ken, working them around hospital appointments. Started with the Natural History East Wing last week and learned about Arthropods. This cancer's going to be a learning experience I missed out on in school.  

This week has been fine. A little bit of sea-sickness for 2 days but that's bearable if you have the comfort of being on dry land. Yesterday was a sleep-over for most of the day but today I'm feeling ready to go.

Please come back, follow my progress and support Target Ovarian Cancer. xxx

Thursday 7 November

I've just completed the first of 6 cycles of treatment. I'm so touched by the donations so far I thought I'd spend a few minutes today continuing the story.

Generally we understand very little about cancer until it affects us, or our loved-ones, so it remains a terrifying idea in most people's minds. Whilst a diagnosis of an incurable cancer is devastating for some patients it doesn't have to be that way for everyone. I hope my blog will prove that.

I was quite surprised how the management of cancer - those little porcini inside - is incredibly scientific. It's about taking blood and other samples for analysis and then measuring exact quantites of medication which is injected back into the blood stream to kill off any hapless fast-growing body cells that find themselves in the flight path.

As you know, cancer is just an out-of-control cell. Mine are particularly wayward and the prognosis was poor but for some reason fast-growing cancers grow slowly in me and that has given me a remission far longer than anyone could have expected.

Chemotherapy is just refined weedkiller. It's bleach. Each therapy attacks cells at a certain point in their growth and for this reason patients are often given two different chemicals at the same time to maximise the war effort. The drawback at the moment is that nobody has yet discovered a way of targetting the naughty cells so chemotherapy entering the blood stream attacks all rapidly growing cells and this leads to the side-effects you hear so much about. The mouth, lining of the stomach and alimentary canal, brain cells, and healthy blood cells are all destroyed and probably a lot more I don't know about. The process of cell death takes about 10 - 14 days during which a patient is most vulnerable to infection but then the body fights back over the third week and makes loads of replacement cells in time for the next treatment. When people are going for their chemotherapy they are at their strongest point in the cycle but the treatment is progressive so patients generally feel less well and less energetic over the period they receive therapy. 

Each time I have treatment I tell my body we're going to a chemical party. You never know perhaps those youthful carefree hours spent in the Llanerch, and other hosteleries, prepared me well for the most recent onslaught of toxins. 

Poor memory recall is one of the most obvious side-effects I have. Chemotherapy affects the 1,000 M connections between brain cells so I might have known you all my life - but chemotherapy destroys my ability to recall your name. In the scale of things it's not the worst side-effect in the world - just a bit embarrassing. Luckily in my case chemotherapy doesn't seem to affect the happiness cells. They're all still in place and if anything even more determined than before. 

Obviously nobody wants cancer but if it happens you will find yourself treated with an awesome compassion, empathy and expertise. People seem to be nicer for having cancer. One of the blessings is joining a very special community of people who are reminded it's good to be decent.  

Before I receive chemotherapy intravenously a blood sample is taken to ensure the red and white cells and the platelets are present in healthy numbers. When I see the nurse poised with that needle I always think of Hatti Jacques and her 'Just a little prick Sir' and have a giggle. Nurses these days say 'scratch' but having a blood sample doesn't scratch at all and it doesn't hurt. Injecting chemotherapy back into the veins is another story altogether and some women have fragile veins so it can hurt a lot. My prescription is measured according to weight. Liquid chemotherapy is given in terms of mililitres per kilo of body weight and this precision has no doubt reduced the terrible side-effects we historically associate with cancer treatments.

I've posted up a picture of my chemo pump. I called this one Hercules. Little sachets of liquid are suspended from the arms of a mobile stand and the trusty little pump delivers exactly the right quantity of chemotherapy in precisely the right space of time. It's a bit un-nerving when you first have this done but it's really rather mundane and many patients take the opportunity of a few hours rest to have a snooze on the reclining chair. Going to the loo is a nightmare as you don't get disconnected. You have to take the pump with you and just the moment you're connected to the pump is the time you suddenly realise you really need 'to go'.  

This week I only had one little bag of Gemcitibane top-up. This nice little chemo shouldn't give me any side effects but is hopefully working away inside seeking out and destroying the bad boys.

As a treat to myself over the next 18 weeks I am chosing one thing each hospital visit that I shall see in London. It may be looking round a wing of a museum, an art gallery, window shopping, or seeing a Show. After treatment on Tuesday I cycled about 4 miles to my London home, had a quick bite to eat then dashed back to the West End to see Warhorse. An amazing show which is apparently coming to Cardiff next year. The puppeteering was fantastic and mesmerising. Surely there were two actual horses on stage and not inanimate puppets? It was so real but very sad and I cried when the horses suffered but it was also uplifting to learn something new about World War I, to celebrate the unbreakable spirit of god's creatures and the empathy between a man and his animal. A show not to be missed!

22 November 2013

Just a quick note to say I didn't update my page last week as I didn't have any chemotherapy. Oncologists measure blood levels before going ahead with chemotherapy and mine were too low to take it last week so I have a chemo-holiday for a week. Feel livelier this week so I hope we can continue though I have another learning curve. In order to boost the white cell production I have to learn to give myself injections from Day 10 to Day 15 after receiving chemotherapy. These will stimulate the bone marrow to produce white blood corpusles and will be administered on the days when cell death occurs and the white blood cells are at most risk of necrosis. Seems to me the chemotherapy must be working if it's killing the most obvious cells. Bring on the day when researchers discover how to target just the cells that need killing and not the whole body!!!

More next week ....

Monday 25 November

Sorry I went a bit quiet last week. When I have my blood tested they siphon off several phials which are sent with different coloured forms to various places in the hospital. Last week I discovered one of the little phials sends a report on liver function. Probably the initial blast of chemotherapy and drugs overloaded the system so I was given a week's chemo holiday and had to return today for a liver scan in addition to measuring red and white blood cells and platelets, weight, wee, blood pressure etc. You can start to worry about all these tests but there's nothing you can do to make the results OK. The best way forward is to accept there are things about your life you can't change so it's not worth worrying about them. Concentrate on the stuff over which you do have control.

Now I'm all for multi-tasking but the appointment schedule this week was impossible. My liver had to be on the fourth floor for the scan at the same time as my veins needed to be on the ground floor for blood testing. 

We went ahead with the triple dose of 2 chemotherapy agents and Avastin and all went very smoothly to start with. It was to take about 3.5 hours so at mid-day I booked a mid-afternoon National Coach return home.  Just goes to show you can't be cocky and expect plain-sailing all the time. I suddenly developed some sort of reaction to the carbo-platin which made me feel dizzy, my temperature soared and I quickly developed chest pains. Very fast response from the nurses who switched off the pump, administered a horse injection of steroid, and after a quick discussion arranged for me to have a couple of ECG scans and general checks, etc. It just goes to show how dangerous this stuff is - but equally how deftly they can manage any problems. I shall now have to take a bucket load of different tablets to help my body tolerate carbo-platin. It's a bit of a worry because it's really only carbo-platin that does the trick so I hope to tolerate it for as many years as possible. I could certainly do without heart failure on top of everything else! 

I've never had an ECG before, so took a pic of the little squiggles that mean nothing to me. Apparently it's not so much if they dip, but where they dip, that's important and the second one was fine, so after an hour or so to recover and having taken a brisk walk along the Fulham Road the last little bag of carbo-platin was emptied into my veins. 

I decided to treat myself to a rail fare home. The less I say about that the better. The train I booked was cancelled due to signal failure, the follow-up train, with standing room only, was re-routed to Cardiff via Gloucester, so I abandoned it at Swindon, caught a slow train to Bristol Temple Meads via Bath and Martin picked me up from there. 

I think in future I shall stick to the National Coach. At least on that you're guaranteed a seat even if it takes twice as long! 

5th December - The Challenge!

When I left hospital on Tuesday afternoon I was given a Goodie Bag of different pills, syringes and a sharps disposal box. I've added a photo of this goullish collection. It was actually a bit daunting and has worried me but part of that worry was just my not dealing with it. Last night I got the bag out, read all the instructions, and marked off all the different pills. Calcium twice daily, three lots of tablets to take a day before, the day of chemotherapy and the following day.These will help me tolerate carbo-platin on 17th December. Then there was the worst of the lot. Five syringes containing a drug to stimulate the bone marrow into producing more white blood corpusles. The nurse had shown me one of the injections and how you grasp a bit of tummy fat, stick the cannula in at 45 degs and then push the plunger. This had to be done today and on four consecutive mornings but it's not something you can rehearse. I didn't sleep well thinking about it but I got up early and did my first one this morning. It didn't hurt at all. In fact I couldn't even feel it. I'm not going to say it was a walk in the park sticking a needle into yourself but I've done it now and I'm hugely relieved. I shan't dread doing it again and hopefully I've learned a lesson that might stand me in good stead for other challenges to come. 

I'm feeling very pleased with myself now and wish I hadn't lost so much sleep over it. 

Tuesday 11 December

The challenge didn't quite stop with the injections. It was a bit like walking up a hill and when you get to the top there's another summit to climb. 

The injections can produce some nasty effects whilst they're stimulating the bone marrow. I guess it's like chemotherapy or any of the other drugs I'm taking. Each person reacts to drugs differently and whilst I've been lucky with chemotherapy so far it turned out I would have a bit of a rough time with the injections. To start with I developed what felt like acid reflux. Loads of people have to live with that so it's just a matter of getting on with something to distract yourself and ignore it. By the third day the reflux was definitely painful and I'd also developed a pulsing pain which shot up my spine into my skull from time-to-time. It was the kind of pain that catches you unawares and makes you yelp like a dog. There seemed no rhyme or reason as to what triggered it off and it was particularly bad when we went for a cycle ride with the dog on Sunday. Pain is pretty scary if you don't know why it's happening so when I found it difficult to catch my breath we decided enough was enough and I rang the Royal Marsden's out-of-hours line. I got to speak to a lovely lady who was enormously reassuring. She asked me how bad the pain was on the scale of 1 - 10. I said '5' which is about 3 more than I've ever admitted to before in my life and this seemed to satisfy her. She explained the reason for the pain and said it was an expected reaction so I felt much better straight away. It was the combination of my poor bone marrow having to work extra hard to produce white blood cells combined with physical exercise and cold weather that had challenged my depleted haemoglobin stocks. I was advised to take some pain killers and rest and was heartened by the news that the discomfort would stop just as soon as I'd finished the course of injections. Now I consider myself to be the lucky one that it only lasted four days but it didn't stop us having fun too. We watched the film 'Waking Ned Devine'. If you're ever feeling a bit lousy and want a film to cheer you up that's the one to watch. I think I shall keep it in my medicine cabinet for future use! lol 

Let's see how I get on when bloods are measured on Monday 16 December. I have 11 whole days to get myself into tip-top condition for cycle 3 of the chemotherapy. 

Come back and visit soon! 

19 December 2013

I thought I better let you all know that the big dose of chemotherapy and Avastin went without hitch on Tuesday. I'd be kidding you if I said I haven't been worried about another allergic reaction taking place this week but with this disease you have to accept there are things the patient can do to help themselves and there are things over which they have no control. I have to put my faith in the hospital staff and rely on them to sort these things out. I did my best to put any worries out of my head but it was still a great relief when the revised prescription and slower rate of IV infusion sorted the problem and I was out of hospital within 3 1/2 hours.

The trip to London this week was a joy. My appointment on Monday was late enough for me to catch a train to Paddington and take a pleasant cycle through Hyde Park to the Royal Marsden. I had the usual blood samples taken and saw Michael, my young oncologist, who said one of my liver functions is still wayward but it wouldn't prevent my having chemotherapy this week. The GCSF injections had worked so the blood counts were were fine and I was also told the tumour markers had showed a promising dive. 

Tumour markers are a way of measuring whether the cancer is growing or receding. Ovarian Cancer produces an excess of a protein CA125 and this can be measured through a simple blood test. The normal range for CA125 is under 35. Mine was heading for the 80s in October and is now 17 so it does seem the little bags of chemotherapy are doing the trick for now. The tumours will return and I'm likely to have less remission next time but whilst I remain sensitive to platinum-based treatments I shall continue to receive it and the cancer can be kept in check. I shall have a scan between Christmas and New Year and this will give the oncologist an idea of how well we're doing and how long to continue the treatment.

You can imagine I was in a celebratory mood on Monday and Tuesday. On Monday afternoon I thought I'd tackle the Science Museum as I was feeling quite energetic. I started on the top two floors browsing round the Wellcome exhibition of the history of medicine. Some of the exhibits were pretty gruesome and if I think chemotherapy is barbaric I can only say it's an improvement on what has gone before. 

On Tuesday I'd booked a late train home to allow for possible hitches with the treatment. I was out of hospital on a steroid-charged high by 12:30 p.m. giving me nearly seven hours to amuse myself in central London. The weather was fair so I cycled around the perimeter of Hyde Park and on to Marylebone High Street. A hair cut seemed nice and relaxing so I called in to Atherton Cox in New Cavendish Street. They cut well, and an added bonus is they're completely laid back whenever I have my hair cut they are happy to look after my folding bike so I can have a browse round the shops. I treated myself to an early-bird supper at Fishworks Seafood Café before cycling back to Paddington and catching the 7:15 train home. Now I just have the little top-up of Gem on Christmas Eve and that's half my treatment plan completed. 

Wishing my readers a Happy Christmas and New Year. I get my half-term report, otherwise known as the scan results, on 7 January and will keep you posted on my progress. 

Friday 3 January

Today is my 61st birthday. Christmas, New Year and a birthday in just over one week becomes a time for reflection when you have a terminal condition. The most positive person in the world couldn't resist wondering how many more there will be. It's very rare for me to feel down but the reminder of the passing of the years, losing two friends to cancer just before Christmas, and extreme tiredness has brought on something of a melancholy mood. 

I'm not much one for routines but it's good at times like these to have jobs to do, a dog to walk, and several other little tasks that can be done without too much emotional or physical effort. 

It's time I dug out Martin's boat curtains and finished them. He's been more than patient as I started them during my convalescence from Appendicitis about 6 years ago. In fact so long ago we've now changed the upholstery on the boat and I need to throw away the one curtain I've finished and buy a different coloured fabric. It feels good to have a goal to achieve. 

The day already seems much brighter. 

I'll let you know how I get on next week when I get the results of the scan. 

Tuesday 7 January 2014 - The oncologists gives me a good Report.

I've had a pretty good day today. In the RM by 9:15 a.m. with Martin to have some blood samples taken and then we met my onco Heike to get my half-term report. She was beaming from ear to ear and told us everything was going exceptionally well. I seem to be responding well to carbo-platin again. Eventually I'll become resistant to it which is why this disease is currently incurable. At least I don't have to worry about that yet as once again my greedy tumours are gobbling up the stuff and are dying as a result. Nothing is guaranteed with this disease but it does seem as though I might be lucky enough to have another decent remission in 2014. 

Today we talked numbers and measurements. Now I'm the kind of person who lives in a cloud of happiness because I have not adjusted to metric figures. You might find this amusing or even shocking but it means I don't stress over the price of petrol as I have no idea what a litre is. I'm not horrified at the price of meat because it's costed in kilos and I buy it in lbs and ounces and as I don't know what a kilo is I don't worry about my weight. The same applies to feedback from the onco on the size of my tumours.

Now Martin understands metric figures so this morning when he was told the tumours on the lymph nodes were originally 3.8 cms he blanched and checked they didn't mean milimetres. That's huge he said. I'm quite amused that I had huge tumours. I haven't a clue what 3.8 cm looks like so hadn't been worried. Anyway by Christmas they were nicely reduced to 2.5 cms so I'm happy with the trend even if I can't visualise it. I certainly have no intention of getting out a ruler to do a conversation and make myself miserable. Apparently healthy lymph nodes are 1 cm so perhaps we'll achieve this by the end of my course of treatment. 

Not only did we have all this good news today, but more treats are in store. As a mid-treatment filip I'd booked Matthew Bourne's Swan Lake this week but by Christmas felt so exhausted I feared I wouldn't have the energy to see it. The exhaustion has been increasing as the treatment goes on though generally it lifts a day or so before the chemotherapy cycle starts again. It doesn't make me unhappy but it does mean I'm limited in what I can do. Imagine feeling so debilitated you can't even find the energy to do something you've looked forward to so much. That's the stuff of depression. Martin had the idea of booking a hotel for me just by Sadler's Wells so I could rest up and hopefully retain enough energy to see and enjoy the performance. The thought of this was enormously cheering when I was feeling so low and was great to give me a focus. As luck woud have it my energy has been restored over the past two days. I have a little studio apartment by Camden Lock so not only will I see the ballet but I can have a foray at Camden Market, a walk along the Regent's Canal, and I'm hoping to have a wander across Hampstead Heath before seeing the ballet tomorrow evening. 

As I write I'm hooked up to my chemotherapy pump. Today is the first day of my fourth cycle. The treatment takes about 4 hours in total. Next week is just a little top-up of Gemcitibane. This means we're on the home straights. With a great deal of support from family and friends and most of all Martin, I've beaten the mid-term blues. Having chemotherapy hasn't stopped me doing everything I want to so far but it has taken a little ingenuity, a lot of generosity, and a great deal of suppport and kindness from my long-suffering family. 

The end of the challenge is in sight. If I continue with the original plan and have no need to delay chemotherapy I should have my last treatment on 25th February. If they feel two additional cycles would be of benefit I shall finish on 1st April. Thank you for reading my blog and your interest in my challenge. Thank you for your generous donations to my cause and two friends who have even donated a second time to buy me a cheery birthday drink. 

Hopefully I can continue to bring you good news and I hope more than anything that if there is anyone out there who is is at the start of a similar challenge that they have been heartened and encouraged by the blog. It's tough but like any challenge there's a goal in sight. 

I'll post another update soon. xx

Thursday 30 January

My new goal is the One Centimetre Challenge. My onco explained that there are tumours on the lymph nodes and this isn't good as they're linked up to everything else in the body and I can do without a high-speed connection to spread cancer to other organs though this will no doubt occur in time. 

Apparently a healthy lymph node is 1 cm. Mine at the last scan were down to 2.5 so there's room for improvement and reduction. I have another scan booked at a horrendously early hour on Tuesday 11 March. If it will do me any good they'll add another two lots of chemotherapy on to my standard dose of six. I don't greatly welcome six more weeks travelling back and forth to London, the exhaustion and increasing the numbness in my fingertips but if it does the trick I'm willing to stay the course and believe me my friends and family, you're helping me along more than I can say because though I don't like admitting it I do have tough days. 

I've had to abandon the extensive museum visits and being outrageous by cycling to my hospital appointments. My energy levels won't take it and I rather worry about levels of concentration so I'm avoiding driving and cycling in London at the moment. 

There is still lightness and joy to be had. I've set myself a world-tour of lunch places in London and have visited the Lebananon on more than one occasion recently. Hannah and I sampled a legendary Polish Restaurant, Daquise, in South Ken this week. It was an experience that may well have been improved had we consumed as much vodka as the diners at the next table. I'd welcome any recommendations to continue the joyful world-tour of London eateries. 

Saturday 1 March 2014 - The End of the Chemotherapy Trek

Well here I am potentially at the end of the current chemotherapy trek and, boy, do I feel rough! There's no pretending that over the last 18 weeks 30.7 litres of chemotherapy, 6.6 litres of Avastin, and just under a litre of liquid steroid and anti-emetics, 20 GCS-F injections and a bucket full of drugs has done anything for my feeling of wellbeing. However feeling good wasn't the point of the treatment. It was about killing bad cells but unfortunately the good ones had to be sacrificed at the same time. I had my final top-up of Gemcitibane on Tuesday so it's nw time to focus on recovery, building up strength, and making plans for the summer. Yey!

For a couple of weeks I've felt unable to take the dog for a walk but now there's an end in sight I've given myself a talking to and the dog and I have taken a slow and uncomfortable meander to the park each day but not necessarily round the usual circuit. If you feel crap you can only look at the ground and count the steps till you can rest on the next park bench. This morning I went out on the bike with Martin and the dog, and I heard the birds sing and I looked up and I saw blue skies. 

I've posted up a sort of before pic and an after selfie just to record the damages done before I go for my post chemo appointment. I only have about half as much hair but half hair is better than none and with a bit of luck I'll soon see curly baby hair sprouts pushing through at the roots. My face is blotchy and covered in spots, my arms are bruised and the veins shot up. I'm an ad if there ever was one to keep off Class A drugs.

I'll post an update after 18 March when I'll have my end of term results so please come back and visit again. 

19 March

Yesterday I went to the Royal Marsden and back in a single day for the first time in 20 weeks. I saw a new oncologist who said he was pleased with the way I'd responded. I don't need more chemothearapy and I can start on my three weekly maintenance Avastin. For now the cancer hasn't spread to the liver or lungs and that's good enough for me. 

This brings me to the end of the current chapter and a long journey. One thousand, eight hundred and thirty-eight miles, and 20 overnight stays in London thanks to the generous hospitality of Hannah and Dave, Abby and Simon, Laura and Seb, along with a couple of nights in hotels. 

Thank you to you all for staying with me and supporting me. 

Love Annie xx