Wednesday, 24 January 2018

Third round

Me working on this blog post
          In my last years summary I forgot to mention one quite important thing. Sometimes in May I noticed that something weird started growing on my temple, right next to my right eye. I started calling it a tentacle out of fun. First I was only watching if it was getting any bigger and when I realised that it was growing and it hurt a bit as well I went to doctors in June. It was removed very thoroughly, they had to take a skin graft from elsewhere and I ended up with eleven stitches but it all healed beautifully. When pathology results came back it turned out to be a kind of non-melanoma skin cancer. Because it was removed so thoroughly in the first place and because of the kind of cancer it was, nothing more needed to be done other than an ultrasound examination of lymph nods in the neck area. So that was the second round of my cancer fight. Short and sweet.  
          Sadly, I have just started the third round of cancer fight and I just have a feeling there won’t be much  sweetness in it this time. Might be short – relatively... The CT scan I have had recently revealed fairly advanced pancreatic cancer effecting the liver already and pressing on gallbladder ducts.  
          Life can have strange turns. On 5th of January I got engaged to the most loving and caring man I could ever imagine. We knew that my health situation looks a bit bleak, yet we made this step of faith.  
With Keith at the airport as we flew together to the UK
          And I will keep walking in Faith, one day at the time. I never said it in my blog this openly but I am a strong believer and I know that my God is able to do any miracle. I will let myself to be surprised.... 

Sunday, 31 December 2017

New Year's Eve Update

In general I think we prefer sharing good news if possible and perhaps because I haven’t had many of those recently I kept postponing the annual update of my blog.
No, to put it plainly, 2017 wasn’t the best year for me health wise. From the autumn of 2016 I was going from one lengthy cold or UT infection to another and crowned the end of the winter season with chicken pox sometimes before Easter this year. Anyone who had it in their adult life simply sympathised with me. And little I knew at that time this wasn’t the end of my difficulties.
The second round started in spring time with back pain. I didn’t take much notice of it as it was connected with some digging I did in the garden. But unfortunately, instead of it getting better on its own, it was slowly getting worse and worse. Soon I needed painkillers to be able to sleep at night, so I went to doctors. The bone scan I had didn’t show that my difficulties were connected with the cancer treated I had in 2015. It was good news, but I was finding it more and more difficult to cope with the pain on a daily basis. The breaking point came at the beginning of September, when I realised that I would not be able to carry on with my life as usual. Visits to the doctors were not very satisfactory. At the point when I was told I could be sent to a pain clinic, and the fact that no one had said anything along the lines of ‘’we will try to find out what is causing your pain’’ I made a decision to go to Slovakia and seek medical help there.
In the past three months, I have seen a neurologist, an orthopaedist, a physiotherapist, a gastroenterologist, an immunologist, an oncologist and a pain relief doctor. I have had various blood tests, x-rays, ultrasounds, densitometry, MRI, CT, biopsy and endoscopy. On one hand, nothing dramatic was discovered, nothing that should be causing my mysterious pain. On the other hand, I cannot say I feel better. My back is giving me the same, if not greater difficulties; also, my digestion is giving me a lot of trouble too. I have lost almost 12 kg, which puts me to 40kg (6 stones and 4 pounds, for those of you who function in the imperial measuring system). I feel tired and without energy.
One thing that was discovered was that my body doesn’t produce any lactose breaking enzyme at all. I was never into milk or yoghurts but I love cheeses so this was a heavy blow. Needless to say that as you start reading the ingredients of common food items you discover that milk is hiding in more them than you would expect.
When I had the CT of my spine done, there were two suspicious lesions discovered. On 16th of January, I’m scheduled to have another CT scan done with contrast dye, for oncology purposes. At the same time, they will look closely at my pancreas as the latest ultrasound showed some abnormalities there as well.
I’m hoping to travel to England for a week before the scan because of my work commitments. Fingers crossed I feel well enough to do so.
Because of my health difficulties, I gradually came to realise this year that I will have to change my lifestyle quite dramatically and in a way it has involuntarily happened already. From 2004 I was a full time volunteer for a charity living with a group of like minded enthusiasts doing full on a great variety of things. I loved it to bits and was very happy there but  as my health hasn’t improved in last three months and I have no idea what will happen after that CT that’s ahead of me I will have to officially resign from my position and that is a hard one for me.
Another hard experience is to learn to live with unpleasant, unceasing, tiring, chronic pain that seems to rule my life currently. That’s for me a new thing altogether and I have a sense that I’m not doing very well in this situation.
Yet there is a silver lining! The relationship born of a dating site two years ago is thriving in spite of distance and my poor health and soon we will have some exciting news to announce. I will say no more for now.
I just hope that my blog post in a year time will be more cheerful!

Friday, 4 November 2016

The Anniversary

I know that most of cancer survivals remember the date of being diagnosed or celebrate the anniversary of being cancer free. For me it's the date when I discovered I had a problem that is somehow the most significant. I think I will always remember the 4th of November 2014. After that followed a dramatic year full of hospital appointments and another year which I must admit was a lot about worrying if the treatment was successful. Especially as I was watching a good friend of mine being diagnosed with brain tumor and dying six months later...
But starting the year three and looking back I suddenly feel that actually not so much changed in my life. 
That first year doesn't feel so dramatic any more and I am hardly ever worried if the cancer has really gone or not. Life settled back to normal, I do everything just the way I did before. I got used to a "different shape" of my body when something is missing easier than I thought I would. Sometimes sadness over the fact that I will not be able to have children any more creeps in but it's a kind of sadness that comes and goes. I might have ended up childless even without going through the cancer treatment. Who knows.
Nicest things last year were that I did a bit of travelling and realised I would like to try to do more of it.
October 2016
I met some people with the same skin condition as mine and I would like to meet more of them.
With Nusrit and Hunter in 2015
With Carly in 2016
I tried the online dating once again, started seeing someone and for the first time I'm in relationship.

While I was going through the treatment I started doing my nails regularly – and I never stopped!
Anniversary mani
 I'm curious what label I will put on this year at the end of it! :-)

Thursday, 17 September 2015

There is a Time for Everything

This was the first day in five weeks I didn't have to do my hospital trip to have my radiotherapy. I thought it would feel strange but actually - it didn't!!! After I have written my last post there was a change in my radiotherapy schedule. As I used to say jokingly I was doing so well with my radiotherapy that I was given an extra bonus of ten treatments. No the truth is the longer treatment schedule is supposed to be less harsh to the skin, that's why it was changed. It means only finished yesterday. Yet I can't say it was too bad. My skin was holding up well, I didn't get too tired, I was fine driving myself daily to the hospital and back and I even managed to do most of it. I worked in  mornings before my treatment but then after the treatment I ended up almost every day either in a coffee shop or in the park (according to the weather but living in the UK it was mostly coffee shop) writing in my journal and if could I went visiting places.  

Picnic at St. Osvald's Priory ruins
My friends went on steam train, I didn't expect to go on the train, I just went to meet them after my treatment in Cheltenham train station but my friend gave me her ticket to go back and she drove my car to Toddington. 

At last I made it! After 11 years living in the are I visited Shakespeare's birthplace from inside

Prinknash Abbey

Winchcombe Pottery

My most favourite park: Pittville Park in Cheltenham

Funny rugby balls in Gloucester

So most of my treatment is over (I'll be still on hormonal treatment)  and only time will tell if it was successful. We will see. But I find that even though I'm fairly rational person there are times when I get panicky in a proper irrational way. If I get any unusual pain my first thought is if it might be cancer or I can see lumps and bumps even where they aren't. Weird... I hope this emotional "side effect" will go over time 
Anyway, after all I have been through I'm going to enjoy some holidays. Why not one holiday a month? Tomorrow I'm off to Devon for a week. It's an usual annual holiday for all of us living in the community and I'm very lucky I managed to go. For a long time I wasn't sure whether my treatment will be finished or not. In October I decided to do something I have never done before - I'm going on holiday on my own and it's very special holiday indeed. I'm staying 8 days in Rome. Something to mark the end of one season in my life. In November I'm going to see my family in Slovakia at last.  Not too bad. I just started wondering how I'm going to fit all my usual work in between those holidays.  
There really is a time for everything (Eccle 3:1): Time for hospital visits and time for holidays. 

Tuesday, 25 August 2015

Nine down, Six to go! or Radiotherapy and Ichthyosis

Yes, finally I started my three weeks long course of radiotherapy. And it started in an exciting way indeed. In three weeks time since my initial pre-radio appointment I lost my tattoo dots. They just simply peeled off with my skin I guess. That gave the radiology team a bit of a challenge. At one point it was actually funny as I was surrounded by four people trying to find those dots with a torch. They had to work out a different way of measuring me up for the treatment at the end. Well, at least I learned that it wouldn't be a good idea to go for a proper tattoo!!!
Lost tattoos wasn't the only excitement I've had so far. The other day there was a false fire alarm bang in the middle of my treatment. Then the machine went bunkers and a technician had to be called in. Last time I had a student there for an observation. I wonder what's next.
When it comes to side effects so far it's not too bad. I mean my skin is locally upset and perhaps a bit swollen but that was to be expected. Yet it's nothing like the skin reaction I had after chemo. I don't feel particularly tired either but maybe it's too early for that. Will see at the end of it.

With my cat

I decided that I'm certainly going to enjoy the whole thing as much as I can. I want to have good memories of it so every time I try to do something nice. I use the time of waiting to do a bits of writing for either of my blogs or reading and after the treatment I usually end up in a coffee shop writing into my journal. Or I go somewhere to see something I didn't manage to see before. I actually enjoy the driving part of the treatment too. As I live and work in the same place I have never done a lot of driving and I'm not a great driver but even though I have friends who could drive me to the hospital I prefer going on my own, torturing Tildie with singing out loud and with my poor driving (Tildie is my much loved car - in full name "Matilda II of Rosary).

This is her just after I bought her last October
And this is me hoovering her sometimes at the beginning of summer

It's good feeling that my treatment's coming to an end. I'm really looking forward to our holiday in September. 

Friday, 7 August 2015

Those who wait

Hard to believe it's more than a month since I wrote the last blog post. To be honest not much was happening. I would say it was time of waiting. Waiting for my skin to get better and waiting for the next stage my treatment.  
In lavender fields
I'm pleased to announce that my skin is better now. Only a few days ago I could honestly say that it is back to normal. It means that it took about six weeks to recover. 
I have date when my radiotherapy starts as well. Two weeks ago I had my pre-radio appointment and, as I jokingly say, I have now my first tattoo ever. Three tattoo dots is the standard way to mark where/how the beams will be directed during the treatment. Perhaps I'll go for some more exciting tattoo next time!
Not that it makes a lot of difference in my case but my natural hair started coming back. It's just nice to feel again my eyebrows and eyelashes, even though they are generally almost invisible. 
Rather big thing is, that as my cancer was hormone receptive, since the last appointment with my oncologist was put on a hormonal treatment. Practically it means that within next two years I'll become menopausal. That should reduce the chances of cancer coming back.  
Apart from all the medical things that are going on I had nice time harvesting some veg I planted in our garden after Easter, enjoying my friend who visited me twice and most of all I made myself pretty busy in our pottery. 

did three firings this summer and working towards two more. 
And when I'm not busy in the pottery I walk around dressed as Olaf the Snowman!  
I hope I renewed my strength at this time of waiting. Next week I'm starting my daily trips to Cheltenham hospital. Most of all I'm curious what my skin will think of radiotherapy... Will keep you updated.