32. What comes after a clear scan? Staying alive…

As you know, I finished up my 3 months of treatment in Istanbul last month with a clear scan. Woohoo! What an achievement! It was and still is a great feeling. I had a lovely month off after that, I took some time off treatment and medication, was less strict on the diet (had some porridge, toast, ice-cream, curry cheese chips, mashed potato – all the carbs I missed the most!), drank champagne, sang at my celebration party, spent some time with family and friends, swam in the sea, did a meditation course, got some semi-permanent eyebrows (blog coming next month when I finish my third treatment) and did a small bit of relaxing while wondering what my next step was going to be.

I had been advised to go back to Istanbul by the doctors there, they wanted me back after ten days but I needed a longer break than that. They want me to do ongoing maintenance chemo for the foreseeable future. It sounds scary to me and I was sure I was done with Istanbul after the last trip but I decided to compromise with them (they want me to go often) and with myself (I didn’t really want to go back at all). So I compromised and I went back last week for a three day visit and I will be going again for another three days in November. And I will be doing one or two more trips before Christmas and I’ll decide then what the next step is. But you have a clear scan Mairead! Why more chemo?! Well the doctors reckon that stage 4 cancer needs to be managed forever. It is more a case of living with the possibility of reoccurring cancer cells and keeping on top of them with ‘top up’ or maintenance chemo, less and less often as time goes on and keeping an eye on the body with regular scans. The body can recover between treatments and it will mean not having to worry about a relapse down the line. Sounds harsh and I don’t have my head wrapped around it at the moment to be honest. But it’s an option I’m going with for now and it feels OK. Getting my body back to health was a huge challenge but I feel like keeping it healthy and staying alive is an even bigger challenge and I’m terrified of not doing the right thing. What if I fuck it up and it comes back? You can tell I’m living a little bit in fear at the moment, a place I don’t like to be. It’s the unknown again and it is slightly uncomfortable but it’s where I am at the moment and I am just going with it for a while. How I’m managing that is by taking it one step at a time because it is too much to think about climbing one big mountain, little hills are much more manageable. I’m going to Istanbul on a trip by trip basis. And Christmas will be another break before I decide what comes next. Hopefully I’ll have another clear scan at the end of this treatment cycle and my next step along this weird and wonderful path becomes clear.

For now, I’m in the mindset that I’m living at home again and just doing the odd trip to Istanbul rather than living out of cases and spending my time at home recovering from each visit. It’s a much nicer place to be in and it means I can have a somewhat normal life again. People crave routine don’t they? I’m getting back to having a kind of routine again although truth be told, I have been all over the country the past few weeks and haven’t much routine at all! It’s coming soon though, I am making it happen! I am making moves on my career and it is so exciting. Have a few things up my sleeve and I will share with you all when the time is right. I am hoping to do some training in the coming months and will be working with people to help them stay healthy. I have learned a lot in this area and I want to share it.

Also, my hair has started to grow back. I just got the head shaved this morning and have a proper GI Jane look going on. It’s so exciting, it grew back much sooner than I thought it would. The ongoing chemo might have an effect on that but it might not either. We’ll see! Don’t want to be bald forever but if I am for another while, sure what about it?

On the subject of fundraising, I had said a couple of months ago that I had hoped to finish up as I was hoping that my time in Istanbul was coming to an end but that hasn’t been the case. We have raised enough money to cover the last three months which ended up costing just over 70k and we have enough to cover the next few trips up to Christmas. Treatment may be ongoing into the foreseeable future so none of this money has gone to waste. We have been in such a lucky position to not have to worry about money due to the kindness of others. It is one big headache we didn’t even have to experience. There are clients in the clinic who are dealing with stress over where the money is coming from for the next trip and it is tough for them. Can you imagine wondering if you can afford to stay alive? It is something which did stress me out before we started fundraising but I am so happy to say we don’t have to worry about it now and I have all of you to thank for that. You have no idea how much that means to not have to stress about money. It is really remarkable what can happen when you ask for help. People have been so kind and continue to be. There have been some events held in the last couple of months to help raise money for the fund and I would like to thank the organisers here. Massive thank you to Siobhan, Leone, Caitriona and Kelly Ann and to the Gael Force group for raising €465. Also a huge thank you to my old work buddies, the staff and students of Mac Dara’s school in Templeogue who raised €400 in a school bake sale. There is a gig coming up next month in Dublin which will also raise money for the fund but the details are under wraps at the moment. It is very, very exciting though and I can’t wait to share the details with you! I will be attending myself and one of my (and my mother’s) favourite musicians is playing at it. It’s a real pinch myself moment!! So exciting! Hoping to share that on my Facebook page in the next couple of days so keep your eyes out for that one, it’s going to be a real treat!

P.S. I sang Tom Petty ‘I won’t back down’ at the celebration party, appropriate for me and what has happened this past year and how I was in it. RIP Tom, a great musician! Here it is…… have a good laugh!

P.P.S Photos of the celebration party below. Thanks to everyone who came, what a great night! Yes we were all pissed, can you tell?!

One comment

  1. While it is really difficult to comment on someone elses tough journey and treatment I am so glad you are staying with Istanbul and the expertise. We don’t want to take any risk with all you have invested, emotionally and psychologically, in getting the amazing all – clear. Their treatment and expertise may ensure your dramatic recovery becomes permanent … which is what everyone wants. You have our continued support and prayers. Julie

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