7 Months on from Maxillectomy

Hi PathHill. You have been through a lot and you sound as though you are coping really well given the circumstances. You have adapted to such a difficult circumstance and are still getting out there and living your life so congratulations. It is not easy and means a lot of problem solving and adapting. My path is similar to yours and I found too that adapting was a big part of getting back to enjoying my life again. I have had 3 ops for jaw cancer starting in 2013 and 2 lots of radiotherapy. A partial mandibulectomy and 2 maxillectomies in 2019 and 2022. I have many of the issues that you mention but am fortunately still able to eat although only puree and have to drink thickened fluids or I cough a lot. It has its own issues as it is almost impossible for me to eat out as there is nothing suitable on the menu and when I have asked if a soup could be pureed for me the answers is usually a no. I still go out to eat with family but sometimes take my own food with me and just enjoy the social aspects of the meal.I often don't eat at all when I am out but just take thickened water with me.  I also cough a lot when I try and talk and eat so prefer solitary meals. My holidays as yours are normally with self catering accommodation. It takes a bit of thinking through as I also have to pack my own food when we are on the road but in the main has worked out fine. What a good idea getting a motorhome as that should solve a lot of the issues around eating for you. I have managed a 3 week trip to Tasmania (I live in Australia) using self catering accommodation and also one to Canberra. I am launching out (literally) and trying a cruise to Vanuatu with my daughter. This is a bit of a gamble for me as I have been told that they can puree my food onboard but when I am off the boat the food issue may be a problem. I am taking enough supplies to make up my own food to take onshore with me so fingers crossed that will work out O.K. as I have read that one of the rules is that you can't take food off the ship. My speech has improved over time and mostly now I have very few issues when using the phone. Sometimes the person on the other end has trouble understanding a word and then I have to resort to 'its E for egg ' as that is one sound I have a bit of an issue with. The sound of my voice is quite nasal now quite different to before my maxillectomies. 

Mostly now I have adapted to the changes and have problem solved so I can manage things. It is still a bit of a trial at times but there is no option as 'it is what it is' and I want to enjoy my life and not waste it. I too have to take physical activities like gardening in short bouts but it still gets done.

I congratulate you on getting on with your life. It is not easy but it is worth it.

Best wishes to you

Lyn

Hi Lyn/Sophie Wow you have been through a lot and thanks for taking the time to reply.

I used to love eating out and going to the local pub to meet friends or just to have a quiet drink. I still go to the pub occasionally to meet friends but it's not the same. The motorhome at least is getting me out and about across the UK. I'm planning a trip to France and Spain to see friends later in the year - a big adventure for a solo 60s guy.

It seems like a lot of adaptation is needed and I'm still adjusting. Some days are harder than others. I guess it will take a while.

Hi Gareth. Yes it does take a while to adjust and there are still good and bad days. I have been on the cancer journey for quite some time now so have had longer to work on it. I started out with day trips then worked up to weekends away and eventually longer trips. My confidence built up that way. Still miss my favourite foods and sometimes I dream that I am eating a sandwich and wake up thinking if I just tried harder but then reality sets in. I still enjoy the aromas of different foods and sometimes ask my husband if I can just have a sniff of what he is eating and then it reminds me of how it tasted. I am a bit of a junkie that way. On the whole though things are fine, it's just a different way of life. 

Your trip to France and Spain sounds great. You are adventurous. I would be a bit nervous finding my way around a strange country. However I suppose with GPS it is not so daunting. I am sure you will have a great time meeting up with old friends. 

All the best

Lyn