I travelled to QMC Nottingham yesterday for what is hopefully the last of the planning and preparation for my jawbone reconstruction surgery. It was a hectic day, I had 7 appointments one after the other, and I met most of the team who will be looking after me.
I'm one of those people who just likes a general idea of what is going on. Nothing too detailed and everything explained simply. I thought I'd got a pretty good idea about my forthcoming surgery, but I had a major wobble when I found out that I'm likely to be in hospital for 3 weeks and I'm going to have a temporary tracheostomy. I think the enormity of what I'm facing finally hit me then, my hands were shaking so much that they had to rescue the cup of tea I was holding at the time. Charts, diagrams and models were produced in an effort to help. It was all too much information, and it was like being back at school where I failed "O" Level biology.
I was mentally and physically exhausted by the end of the day. The hospital transport home was late. We then had to collect a patient from a nearby hospital and he was still having his radiotherapy. This meant we hit the Friday rush hour traffic. I was trying to cheer myself up by eating a little snack. I raised a spoon of strawberry jelly to my lips just as the car braked suddenly. The jelly slid down my scarf, cardigan, t-shirt and jeans, and ended up in my handbag.
Oh Margaret, you poor love what a lousy day you had. But, you still managed to inject humour into the saga and especially with the jelly fiasco. That speaks volumes that you'll be able to do whatever lies ahead and get yourself back on track.
Wishing you the very best for your upcoming surgery, and don't lose your great SOH. Big hugs my lovely xxx
Big hugs the jelly in your handbag made me laugh. Margaret you’ve got this one day at a time the hostess will look after you
hugs.
Hazel xx
Hazel aka RadioactiveRaz
My blog is www.radioactiveraz.wordpress.com HPV 16+ tonsil cancer Now 6 years post treatment. 35 radiotherapy 2 chemo T2N2NM.Happily getting on with living always happy to help
2 videos I’ve been involved with raising awareness of HNC and HPV cancers
Good evening Margaret, i remember when i had my appointment before the jaw reconstruction, like you, i was at the hospital most of the day, meeting and chatting with the team, it's very exhausting. Having a trachy fitted is ok, it's just uncomfortable for about two weeks, along with having suction if needed. It's quite an involved operation with a maxillofacial team and maybe an ENT team because of the tracheostomy. You sound like me; just having the basics explained to me is enough for me, rather than making things more complicated. I found having a tablet and a mobile phone a great way of passing the time, along with music and puzzle books, i was also lucky, as i was in a side ward, so I had my own TV and bathroom, which suited me rather than being on the main ward. Wishing you all the best for the operation, hugs.
Chris xx
Hi Margaret. I am the same as you, I want to know the info but in a simple enough way that I understand it. I left the finer details to the surgeons. There is so much info that you can go into overload otherwise.
I have had over time 2 occurrences of jaw cancer one in 2019 and one in 2022. I have not had a jaw reconstruction as there was too high a chance of failure so I have had implants put into my cheekbones with a titanium bracket attached that my dentures attach to. During both of my maxillectomies I have had temporary tracheotomies. The first time it was a bit of a challenge although I knew it was going to happen. It is the fear of the unknown. Both times the tracheotomies were removed prior to me leaving ICU. The second time I was ready for it so was much more prepared. Not being able to talk is hard but I resorted to hand signals and a small whiteboard to express my needs. The nurses were great. The tracheotomy also had to be suctioned every now and then which was not painful at all. The removal of the tracheotomy was easy and also not painful. The care I received in ICU was exemplary my every need was looked after. There were other tubes involved (catheter, feeding tube) but they were all removed one by one and by the time I left the hospital I was tube free. The physio came in daily and got me walking and I had visits from Dietician, Speech Pathologist and Occupational Therapist. It gets fairly boring in hospital so be prepared and take your phone or whatever you enjoy to keep you occupied.
You've got this.
Thinking of you
Lyn
x
Sophie66
Thanks very much Chris, that's helped reassure me. Yes I'm already planning my entertainment. I've got plenty of books on my Kindle, and I've filled my mp3 player. I enjoy doing puzzles so hopefully I won't get too bored.
Thanks very much Lyn, that was very helpful. I'm having my RIG feeding tube put in tomorrow, and then hopefully I'll get a date soon for the main surgery. I've been warned I won't be able to speak so I've got a big notebook ready. They told me about a text to speech app. I don't have a smartphone but I'm going to see if I can get that working on my tablet.
My husband is finding text-to-speech really helpful after his laryngectomy. A small whiteboard (A4size) which costs a few pounds from a major online retailer is also very useful for quick interactions with hospital staff. They are very light and portable and can make simple conversation quicker than if you type in a sentence on a phone then turn it to speech.
The whiteboard sounds a good idea, many thanks for the suggestion.
Hi Margaret,
I just wanted to add my best wishes for your upcoming surgery. I had my mandibulectomy in May of this year and I remember only too well the anticipation beforehand. You'll get through this. I've just got back from the most wonderful holiday to Italy. Wouldn't have believed that would be possible six months ago. You've got this just take it all one day at a time.
Sending big hugs,
Eliza
xxx
Thanks very much Eliza, I'm glad you had a lovely holiday. xx
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