My experience of suffering from ichthyosis and fighting cancer
After I was diagnosed with breast cancer I contacted two major support groups for my skin condition trying to find out whether there are any members who have gone through cancer treatment and wouldn't mind sharing their experience. I wasn't successful and that made me share my own journey for the benefit of others.
I'm in my late thirties being born with severe form of CIE. English is not my first language as I come from Slovakia but I have lived in England for more than ten years.
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
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!
I'm curious what label I will put on this year at the end of it! :-)
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 I 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
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.
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.
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 sayit was a 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 I 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 allI made myself pretty busy in our pottery.
I 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.
I'll start with good news. Just before my third cycle of chemo I actually had a very nice week when I was OK and my mum visited me all the way from Slovakia. We managed a few local trips, a bit of shopping and just being around my place. It was delightful - even peeling mountains of vegetables before a busy weekend.
This is just a funny photo: Presents you get from your family if you are a cancer patient.
And this was me in Cheltenham after my pre-chemo check up on which I was given the results of my recent CT scan. The news is: No sign of cancer being spread elsewhere in my body. Celebration!
It was quite nice that my mum could accompany me during the third chemo.
She left two days after. I was quite glad it worked that way considering we booked air tickets well ahead of time. She had no need seeing me getting over side effects. Usual side effects weren't too bad after all. I kind of got used to the pattern, knowing what to expect Yet when I was being almost back to normal, something took me by surprise. I just finished my standard post-chemo steroids and antibiotics when my poor skin has gone totally mad. I felt similar like first time, but in much worse scale. First time it was painful only for about three days but my body had probably still enough strength to fight this flare up. This time I was just helplessly watching more and more areas being upset with no sign of improvement and constant higher temperature. After few days when I was in so much discomfort that I found it difficult to walk (my legs and forearms were worst), I phoned the hospital helpline. By the time I got to the hospital I had quite high temperature so I ended up hospitalized for 72 hours getting intravenous antibiotics, painkillers, extra fluid through drip against dehydration and my skin doctor came to see me prescribing all sort of things including steroids yet again. When I got there a doctor who saw me first asked me: "So what do you do when it gets this bad?" (meaning my skin). I looked at her and said: "I don't know, it never gets this bad."
I wasn't sure whether to publish it. I don't like posting photos like this, it's like: "Feel sorry for me" kind of thing. Besides I don't want to scare or discourage anybody who will have to go through cancer treatment as well. But then - it gives better idea what I'm speaking about. Looking at it from the bright side: I was still very lucky that my skin didn't brake open, it wasn't weeping, no ulcers. On thethird day of my hospital stay after I started oral ABX instead of IV ones I was desperate to go home although I can't say I felt much better. Nothing to do with hospital it's just home is home. I must say although I didn't stay in hospitals too many times in my adult life this was the nicest ward I've ever seen with extremely kind and helpful staff.
This is the adjoining garden. I was reading there on my last day - being free of my spider friend (a drip stand). Anyway - I was discharged on Saturday but real turning point came on Sunday. After ten days it was thefirst evening I didn't have higher temperature and suddenly I realized I can walk a bit better. Mornings are still the worst (at one point I just sighed: "I didn't know my skin can hurt this much...") but I can see it's improving now, I have more energy in me and I'm in a better mood. Funny how physical discomfort can get us down. Still on strong ABX (oh - did I mention they discovered I have MRSA on the top of everything?) I think with chemo and all ATX there can't be an alive thing in my body any more.
Now here goes the big news. On Monday I saw my oncologist. It was supposed to be a routine pre-chemo check up but as expected ended up quite differently. Thinking of the whole situation beforehand I was happy to go ahead with more chemo after my skin settles back to normal but wasn't sure I would be strong enough to carry onif I get the same skin reaction again. Well I was taken by surprise when my oncologist decided to stop the chemo altogether. Somehow didn't expect it. More than one of my friends asked if it was a good or bad thing. Well it is as it is. I trust the experiences of the oncologist and let's hope that even the half of the chemotherapy I was given did the job if any of the cancer cells got stray elsewhere in my body. Above all - I trust my God and that gives me peace. But it is a strange feeling in some way...I wanted to go through all of it, pass with flying colours, to be a hero, to show you can do the chemo even with severe form of ichthyosis....that's not happening now, is it? Oh well. What about a month holiday from all hospital appointments now as summer hits the UK? Not bad either. That's how long the oncologist gave my skin to get better and then I'll have to face the radiotherapy. Good luck with that one!