Over the past twelve weeks I have been going from strength to strength. I have not posted on this blog for a ridiculousy long time, and I am sorry for that. The good thing, however, is that whereas my absence is normally a sign of me being unwell and feeling super crappy, now it is because I have been living a life that feels somewhat normal and I am loving it. I am enjoying being removed from my illness; from not having it on my mind twenty four hours, seven days a week, my life no longer overflowing with cancer filled hospital visits and admissions, being confined to my bed or sofa on the good days and the hospital bed for the rest, and feeling generally too unwell physically and mentally exhausted to do anything.
I had begun to lose hope of life getting back to how it used to be, and to me things almost felt hopeless. I was stuck in hospital for ten days at a time, then I would be out for a few days before needing to be readmitted for IV antibiotics, monitoring and blood transfusions. My arms were purple from all the canulas, I was blood transfusion dependent and I was losing more and more weight from a combination of not eating to avoid the stomach pain that it caused and my body being in a constant state of trying to fight infection.
After a particularly nasty emergency admission in December, I had surgery on the 16th. It got closer and closer to Christmas as the post surgery complications continued, however on Christmas Eve I was finally discharged and we arrived home at nine at night – cutting things pretty fine. I had a lovely Christmas surrounded by my family in the comfort of my own home, happy in my own bed at night. I was able to eat Christmas dinner, cheerily enter a Christmas dinner induced food coma, put Scout in her Christmas jumper and wear my Christmas pyjamas in a Christmassy way. Basically it was a brilliant Christmas.
Since Christmas Eve, I have stayed out of hospital and been well, better than I have been since before my hemi sacrectomy way back in September 2015. Quite frankly the surgery has been life changing. It is astounding how quickly I have recovered now the offending, leaking bit of intestine has been figuratively cordoned off from the rest of my digestive system. I have energy, an appetite, hope and my life is beginning to fill up with things that have absolutely nothing to do with cancer. It is great, greater even than Donald Trump thinks he is (which is pretty darn great – actually, in fact, the greatest.)
So although there is a ridiculous amount of medical stuff to fill everyone in on, in this post I am focusing only on what I am lucky enough to say my life is like I right now. I am going out with friends, and have gone up to London on the train several times by myself like a big girl, which again I hadn’t done since before my hemi sacrectomy. I am not needing my wheelchair at all, nor my crutches (my physiotherapist would not approve of me never using one, at least, but I am a strong independent woman who don’t need no crutch), and I am slowly but surely coming off my pain meds.
Immediately after surgery I was put on a twelve week course of intraveneous antibiotics, which finished last Thursday. We were able to do my antibiotics at home (well, my mum did my antibiotics for me) and although they were easy compared to everything else we have been through, since they needed to be administered three times a day and each time took an hour to run through, they still meant we had to be at home for certain times of the day.
Last weekend, a few days after they finished and my antibiotic enforced curfew was lifted, I was able to go out with my friends and dance for the first time since my big spinal surgery. I feel like I am finally getting back to my old life and that my future will not be anywhere near as limited by my illness as I had begun to think it would be.
The reason I have not posted is not so much that I have been too busy out and about painting the town red, and more that I am enjoying getting some well needed and long awaited distance from my diagnosis and the medical side of things. Almost every moment of my life for so long was dictated by my illness, and I felt totally defined by my diagnosis. Right now I feel like the old me and I need to keep feeling like that, at least I am determined to for as long as I can. I don’t really want to think about everything that has happened over the past two years, particularly the shitstorm that has hit over the past nine months or so, and unfortunately updating my blog about what had gone on would have forced me to relive everything. I apologise I left things so long to let everyone know I was okay, especially as so many of my more recent blog posts talked about how unwell I was and were pretty intense. So I just want to reassure everyone that, for now at least, I feel fabulous and am the healthiest I have been in forever.
I am still having my three monthly scans to my chest and pelvis to check for any recurrence of sarcoma, and I feel incredibly lucky that I am remain sarcoma free. It is actually coming up to eighteen months now that I have been sarcoma free, which is amazing. Although I am so much better, the idea of recurrence, becoming ill again and/or needing further surgery is terrifying and it is so upsetting to think of having to go back to hospital, just as my independence and health are at my fingertips. At times it can be overwhelming and it is feels as though only one small thing would have to change for my world to go crashing back to how it was a few months ago. The way I am dealing with these fears right now is to try not to think too much about the things that have happened and instead focus on right now. And right now I am feeling, in one word, content. I realise how lucky I am to have the surgeons I have on my team, who have truly changed my life and given me a chance at health again. I am making the most of these moments and am intent on getting as many experiences in as possible in case something happens. I do not know what will happen in the future and I cannot control it, hell I cannot really even control whether I worry about what will happen (I know everybody says try not to worry, but seriously I had cancer and I’m obviously not going to be chill about that). I can, however, control what I do right now. And I choose to drink wine, dance and have an all around fabulous time.
I may not update this blog for a while because I want to enjoy being well and not totally defined by sarcoma. I feel like my name is, to an extent, synonymous with sarcoma and I want to change that. So right now I am taking a break, but I want to thank you all so much for all your support. I do not want to pretend sarcoma never happened and I am not ashamed in any way of the issues I continue to have, nor am I pretending that everything is perfect and that everything has gone back to how it was before. I do however want to restore that other dimension my life and personality had before sarcoma hit the Semikin household. This blog has been the best form of therapy for me, and has helped me make sense of my feelings and fears when I have felt lost, scared, confused and alone. It has been an amazing outlet and a confidence boost at a time I have needed it most, when I have felt like I have lost everything. Knowing I have had everyone behind me and that I have been able to make something productive come out of this diagnosis and all the shitty shitty shit that has happened to me has been a comfort. It has been a reassurance that whilst so much is now out of my control, I can still have a voice. Sarcoma has taken so much, but it hasn’t taken my voice.
This is not the end, but I am saying goodbye for a bit, at least. (God, that sounded dramatic!)
Thank you everyone! And fuck you sarcoma.
I managed to make a gallery of some photos of me living the high life since my latest surgery, which I am very proud of because I have horrible computer skills. Click away for some nice little captions. (Actually, they’re pretty average captions – I don’t want to big them up.)