Hi everyone. I've got a bit of an update. All is good though.
Due to covid, I (like many people) have been having a lot of my appointments done via telephone or video call. Last week I met with my SLT team who have been seeing me every 8 weeks. It was a good meeting where I was able to list a good deal of foods that I had a tried to eat, and another list of foods that I had been successful in eating. It's been just over 9 months since I finished radiotherapy and it's been a crazy journey of frustration, tears, jubilation, determination, success and some failures. I'm able to talk pretty well, I'm eating solid foods with plenty of sauces and liquid (a litre of water at meal times is pretty standard, but my kidneys are very happy about that), I've even put on some weight! (After spending all of my life being told I should lose weight, this is a pretty weird feeling to be told it's OK to gain weight. I just never want to be as big as I was before)
My team decided that there is nothing they can do for me, and actually I'm teaching them things that they had never considered before ( Ensure plus chocolate and Ensure juice plus orange, blended with cocoa powder and ice makes an amazing choc orange custard like drink. Try the vanilla with lime and blend with 2 ginger biscuits and ice for a key lime pie - totally great for building up swallow muscles too!) So they discharged me. No more SLT appointments!
My medical team are also amazed with my progress. I remember one of them asking about my energy levels at the end of week 5 rads. I said that I was feeling tired more and finding that I had to sit down to do the laundry. She said she meant how long was I going to bed for after treatment. I replied with "Oh, I've never thought of doing that".
I speak to my medical team once every 6 weeks, via phone call, and I see them face to face, once every 3 months. It's timed with the day I have my CT scan. Apart from a tiny lump in my neck (non cancerous necrotic tissue is all they can say, but it hasn't grown and isn't causing any issues and has probably been caused by radiotherapy) all is good. I've had 3 clear CT scans and my next one is in October, the week after I come back from my holiday in Portugal (pending covid restrictions being lifted as it's a banned travel destination for the UK)
My PICC and RIG (G-tube) have been removed which has made me feel no longer a patient. I've been out for walks with my husband, and yesterday I was about to get my hair (which is now growing back as I'm no longer on immune suppressors) cut and coloured, in a proper salon.
I've been made redundant, due to covid, so I'm job hunting. I've been talking to recruiters on the phone and via video calls, and my speech has been fairly clear. Sometimes I have a "mouth oops" where it doesn't come across clear, but it doesn't happen that much. I'm feeling a lot more confident that I used to be. I think singing along to the radio/my cd's and also watching footage of Freddie Mercury (he had 4 extra teeth and a overbite, so he had to over pronounce and use his mouth slightly differently to help him articulate. Plus I found I have to slow down a little bit when speaking) has helped me a lot. Good job I'm a Queen fan
I've started writing a book about my journey, and a recipe book. I found that there wasn't anything suitable for people on soft food diets. What I could find was all bland food. I wanted food that was exciting and flavoursome. Foods that would work with a rads or chemo mouth. So I'm writing down what I used, even things like my Ensure tricks, or blending pate into gravy to give that meaty flavour that I missed. Adding in hints and tips like how chicken breast doesn't work for me as it is very dry, but browning off chicken thigh and then poaching it in stock gives you such tender, juicy meat that works better with an OC mouth.
I'm finding my journey book is cathartic and emotional. It's helping me understand what I went through. I'm able to step back and look at what I've achieved, and what a long journey rehabilitation really is. I've come a long way but I know that there is still more to learn. I've yet to eat in public, I've yet to attend a party. I've still got to have a job interview, which then opens up meeting new people. I'm a recruiter, so I need to make sure I can interview clearly. It all takes time and practise. I'm learning that it's OK to fail, it's OK to stop practising for a bit and give yourself a rest. You are allowed to push yourself hard, but you're allowed to give yourself a break. It's your body and you know what works for you, but don't stop trying new things. I ate toast the other day, I've eaten steak, and last night I had some fish and chips.It's also OK to know when something isn't working, like the chicken breast. I love chicken, and was so frustrated that I couldn't eat it. Discovering that chicken thigh has more fat in the meat , compared to the breast, made sense in why I could eat it and not chicken breast (which has no or very little fat)
I'm helping other OC patients. Friends message me about friends or family members who have just been diagnosed. I'm able to give them some idea of what to expect after surgery, radiotherapy, rehabilitation, eating etc. I always tell them that this is my experience and that they may go through something different, as it depends on the individual. I send them here and I send them to some charities in the UK.
I've also been trying to find more information on people who've had OC and their journey. There is a Michelin star chef in Chicago called Grant Achatz, he had the same cancer as I had. He had different treatment to me, managed to join a non surgical clinical trial (at the start of the trial journey) and was able to not lose his tongue to this awful illness, but went on to earn 2 Michelin stars. It was great to read, but also hard hitting at times.
I digress, all in all I'm still doing well. I'm waiting to see an endocrinologist as my pituitary gland no longer works, and I have other hormone issues, all due to the immunotherapy trial I was on. I didn't get any of the common side effects, I got the extremely rare ones, and my body added a new one to the trial. I'm on 5mg of prednisolone steroid every day, to give my body what it can't produce. My thyroid function has got worse, due to the rads, but I already had an underactive thyroid, so it getting worse was expected.
Apart from getting tired easily, I'm all fab and groovy. Not bad for having my tongue removed a year ago.