immunotherapy

The Sniper

~ justaneye73 ~ Leave a comment
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Well worn muddy trainers!

It’s been over 2 months since my last blog. I hadn’t realise the time slip away. There has been no reason other than I haven’t thought about it. Which equates to I haven’t thought about my cancer, which is a good thing.  I say ‘my’ cancer because I have been thinking about others peoples’ cancer. Other people with eye cancer that we have lost recently to this dreadful disease. Friends who haven’t had good news from scan results and are waiting for what comes next. More treatment hopefully. Treatments that work and can conquer the awful liver mets. Liver mets, the thing that gives us all sleepless nights.

It still shocks me how relentless and cruel cancer is. Getting bad results just before Christmas, or on birthdays or when you have to attend a child’s parents evening never seems right. But of course cancer doesn’t hold your diary and work out the best time to deliver devastating news. Is there ever a best time?  “Oh you’re blowing up balloons for your daughters birthday party? Sorry to disturb you, but you have something suspicious on your liver. Enjoy the cake and we’ll discuss options next week.” Relentless. Cruel. So my thoughts have been with them. Friends who are waiting, hoping for a cure, and slowly as you think of them, the fear creeps in. You can’t help it or stop it. So I keep my head down and keep busy.  Don’t write a blog, don’t draw attention to yourself, cancer may not notice me and move on to someone else.  I think of ocular melanoma as a sniper,  slowly picking us off  with what seems like no rhyme or reason. People with the same size tumours, same treatments,  have very different outcomes. I try and make sense as to why that person has died and I’m still here, but at the moment there is no sense to it. I hope research eventually explains the why and can give us treatments, so my friends don’t have to lose hope. I’m willing on these amazing immunotherapies so that they can come and quash the sniper, before he strikes again.

Now as most of you know, I am running the London marathon in April for Ocumeluk, the fantastic charity that helps us rare, unique eye cancer bunch with everything from practical appointment things to the more heavy emotional stuff. So just a little update on how it’s all going. Very well thank you!!  I’m shocked. My long runs are now 12 miles!! I can’t believe it. And I haven’t suffered a single blister yet. When I first started training I was running just over 3 miles and I just wanted to cross the finish line, but naturally as you run and improve, you start setting yourself little goals. I have two. The first is to beat my last marathon time of 4 hours 36 minutes. Hilariously to do this I thought the easiest way to achieve this would be to tell my husband and kids that I won’t be stopping to ‘chat’ with them when they come and support me. I haven’t broached that with the kids yet as my youngest was asking if she could make a banner and often cycles with me while I run. Could I pretend not to see them or not hear them when they call? Ha Ha! Get them back for calling me deaf and blind! Yes I know I can’t that would be mean,  I won’t have any choice but to stop, damm that just means I am going to have to just train harder!

Anyway, my second  goal is to run Richmond park  in under an hour. Now those that know Richmond park will know it has some ghastly hills. When I first did it in September I crawled up the hills and finished in 1 hour 15 minutes. Chuffed to bits, red in the face, looking like I was having a heart attack, but I did it. Yesterday my time was 1 hour 1 minute and 20 seconds! Woohoo!!

So I’m thrilled with how it’s all going. But just to clarify that I haven’t turned into a boring athlete who checks strava every few minutes like some people (Mr J!!). I’m still not a natural runner. I don’t look forward to my runs, I look forward to the end of my runs when I can eat and drink what I please.  A friend asked me today with all the training I’m now doing have I stopped drinking? What?! Of course not! I have eye cancer. Not insanity!!

So cheers to many more ‘end’ of runs. Fingers crossed for many successful treatments on the horizon for our friends and if anyone would like to sponsor me just follow the link below.

Ruth xxx

https://uk.virginmoneygiving.com/ruthjohnston73

Other Support

~ justaneye73 ~ Leave a comment

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A strange thing about being diagnosed with cancer was that I didn’t feel I had it. At times I felt a bit of a fraud. I looked well, I had no hair loss, weight loss or any other classic cancer signs. I just looked like a normal person. But as I did have it, I was open to any help on offer. So soon after diagnosis I went and registered at the Mulberry centre in Isleworth, it’s a cancer support charity for anyone effected by cancer. I didn’t know what support I wanted, I was probably just going through the motions, but I had heard good things so thought I better sign up. I had only been out of hospital for about a week so my sister drove me down. As  we walked in  I noticed it had a lovely warm atmosphere. People are very inviting. I could actually imagine going there to relax. It has a slightly, lovely, meditating garden feel about it, rather than a grotty day centre feel. While there I saw a lady struggle to come in, she looked weak through, I was guessing the brutality of chemo, she had hair loss, was very thin  and I was standing there looking like I had a bit of conjunctivitis. See? A fraud. My cancer wasn’t bad enough to be there. I filled out the forms and left. I told my sister I was never going back. Those people were ill and I wasn’t. I didn’t want to be associated with cancer. Little did I know then that in a couple of months I would be attending the centre weekly.

The other time I felt a bit of a shock at being linked to cancer was before my treatment. Again with my sister we were talking about who I had told, who I still had to tell and who I couldn’t cope with telling, so  was hoping to delegate the task to her.  It’s a bit like organising a wedding,  who to invite, who not to invite, but obviously not as much fun.  My sister said “I haven’t told such and such you have cancer.” It physically stopped me in my tracks. I’ve got cancer?  Cancer? I hadn’t heard the word really since diagnosis and the 24 hours after. Now here it was being bandied about in the middle of a pyjama aisle in Marks and Spencer’s. I had cancer. When people describe being told they have cancer  being like a physical punch, they aren’t wrong, and the blows just keep coming to take the wind out of your sails.

I had mentioned before, that I had received a lot of support from the eye cancer Facebook group, that was set up by Ocumeluk, the eye cancer charity, and they were having a conference in September, just before my next eye appointment. I  had it sitting in my e-mails and I wasn’t sure whether or not to go.  I felt strange being associated with cancer. I didn’t want to be associated with cancer and  I didn’t want to be frightened by ill people and be standing there like a fraud again. But after my last eye scare I needed to arm myself with all the information available to me while I was in a mentally stable place to take it all in. Also I felt I had made a few friends in the group and they had said they were going. So a little bit like a kid in the playground saying “I’ll go if you do” and also because my husband  said he would come to hold my hand, I went.  I was really pleased I did. The ice was broken very quickly when a lovely man bumped into me with a cup of tea, “sorry didn’t see you there. Prosthetic eye.” I was standing there deaf in one ear while he spoke to me with sight only in one eye and I started to laugh. As we spoke I realised I actually couldn’t tell which eye he meant.  I asked him which eye had been replaced as I did many people that day, the prosthetics are amazing. Really incredible. It was the first time I had ever met anyone else with eye cancer and there must have been over 60 of us in the room. Everyone was asking each other about their own stories.  Many people there had liver mets and were doing incredibly well on the immunotherapy’s. There were talks on various treatments, most of which went over my head, including one from my jolly liver mets guy. I was glad to see he was legit and I wasn’t seeing a dodgy quack.

I came away and for the first time I felt there was hope, a lot of it. I felt the same enthusiasm for the immunotherapy that my oncologist had and had tried to tell me about at the beginning of this process, when I had just wanted to punch him. Things are really moving on in the cancer world. A year down the line I don’t feel the same physical blow when people put me and cancer in the same sentence. It has lost its force to take the wind completely from my sails.  I know I still get scared at scan time, who wouldn’t? But there are treatments and plans and people working tirelessly on our behalf to find a cure and prolong our lives.  So cheers to the brainy scientists.Keep up the good work!