Here we go again

Thank you Linda for your words of support. Yes this forum is such a good support, I am always grateful that I stumbled on the Macmillan site. I wished I had found it when I first started my cancer journey in 2013 but better late than never.

Lyn

xx

Hi Everyone

Further to my post a couple of weeks ago I now have some more information about my forthcoming operation and I was wondering if anyone can give me some insight as I have a few questions.

My operation is to be in 2-3 weeks time as I first have to see another 2 specialists and have a PET scan.

I am to have another maxillectomy this time on my right upper jaw. The surgeon is removing the jaw and replacing it with a bone graft from my leg and I will be in hospital for about 2 weeks. My surgeon says that the prognosis is good so that is really good news.

I have had the experience of the maxillectomy on the left side already but was wondering how it might be different with the addition of the bone graft. Last time I had an obturator to cover the hole in my palate and did not have a bone graft. This time I cannot have an obturator as there is nothing left for it to attach to.

I know there are several people on the forum who have had a bone graft this so would appreciate their insight.

Did it take long to recover from the operation and what was your experience?

Could you eventually get a dental plate or was there nothing that a denture can attach to other than using a Polydent type of glue?

I am especially concerned about the length of time I will be in Intensive Care as I found this really challenging last time.  I was in Intensive Care for 4 days last time so not sure if it will be longer this time. I was so uncomfortable lying there not able to move except when the physio came and dragged me around the area once a day and the time passing was so slow. I especially found the tracheotomy challenging. The mucus would build up and up and I felt like I was going to choke on it before the nurse came around to clear it. On top of that I had some really horrible hallucinations, from the pain killers I assume. It’s awful when you know it is a hallucination but can’t do anything about it as it is there right in front of your eyes.

There was a clock in my line of vision and I kept on looking at it and saying ‘you can do another 10 mins’ and when that had passed would say the same thing again and eventually got through the day.

Are there any tips for managing the time in Intensive Care with a more positive attitude? What tricks can I use to help pass the time? Should I look into some form of relaxation therapy to help? If so is there one method that anyone has found that works better than another?

I would really appreciate anyone’s input so I can get myself in the right frame of mind with some tools to use before I have the operation.

Thanks in advance for any thoughts.

Lyn

Hi Lyn. I'm so pleased the outlook is good but aghast at what you face. I can't help with the bone implant but just wanted to type a few words of support. Is there any pre surgery counselling available...maybe to help you with some coping strategies ? Certainly relaxation therapies do seem effective for a lot of people. Walking in the park with the dogs, lying on the beach listening to the surfer favourite trip....all seem so inadequate.Can you take some music you can listen to via earphones? Would that be possible with all the paraphernalia?

Just sending you a big hug

Having a second or third treatment means you are better prepared but also you will be anticipating previous difficulties. Hopefully your team will be listening to your particular concerns.

With regard to the tracheotomy, I recall my experience and I know what you mean by that build up of mucus which made me cough and even want to retch. The solution was frequent humidifying measures. I actually found the nebuliser, which was one of the methods used, one of the pleasant and even relaxing moments in my treatment.

I believe there are other humidifying measures which can ease the build up of mucus and aid breathing.

Perhaps flag up your past experience and get it in your notes that a nebuliser or similar measure be used frequently so you have a better experience this time.

I’m so sorry you have to face another bout of treatment, but your approach seems to be very rational and positive, although I’m sure you have a great deal of anxiety too.

Stay strong and let us know how you get on. Cathyxx

With regard to positive distractions, have you ever come across NaNoWriMo?

It is designed to encourage people to write a first novel. In theory it is designed for November, but anyone can sign up at any time.

They say we all have a book somewhere in us, but we don’t always have time to think about plot and characters. Being stuck in hospital gives us thinking time, and planning a story can be a constructive way to use that time.

It doesn’t matter how much or how little you come up with, but you may even find you do have a story to tell when you are recovered enough to try it.

Hi Lyn. So pleased you’ve got a positive outcome from your consultant. Sorry can’t help with op sn sure chris2012will pop on later with his words of wisdom. Is it possible for you to down load audio books? Or relaxation apps for after intensive care ? Maybe there’s different painkillers they can give you this time that might not give you hallucinating episodes. 
I used the take my head on bike rides walks holidays for radiotherapy don’t know how that would work to pass the time. 
dending hugs your way you can do this big girl knickers on and look forward. Let us know when  you are going in.

Hazel 

Hi Lyn.  I really can't offer any advice aside from talk to your clinical team - especially the anaesthetist - before the op about your prior reaction to the drugs.  They may be able to try some alternatives.  That conversation worked for me when I had a bad outcome with some opioids previously.  Other than that, everything crossed for you.

Hi Lyn

Pleased to hear your surgeon has given you a good prognosis for this operation.

My father in law was due to have a bone graft in his jaw but in the end the surgeon thought this would be a procedure too far due to his age (93) so he had a metal plate instead so unfortunately I can't help with that side of things.  He did however find a nebuliser helped with the mucus so perhaps you could ask beforehand whether they can help you with one while you're in intensive care? 

I would definitely speak to your team about experiencing hallucinations with the previous pain killers.  This is not uncommon and they can give you something else.  My dad suffered terribly with hallucinations on several occasions when he was hospitalised.  On one occasion he was unforgivably rude to one of the ward sisters and at that point we asked about alternative pain killers which helped enormously.

I was thinking along similar lines to Hazel about whether you would be able to take in something to listen to.  I found audiobooks really helpful to get lost in while I was immobile in hospital for a few days. 

Finding a relaxation therapy that suits you and you can start practising now sounds like a good idea.  I'm afraid I can't recommend one though as I've not tried one. 

Cathy's suggestion of a novel sounds good too.

If I can think of any more coping strategies I'll let you know.

I do admire your positive attitude Lyn and your proactive stance to prepare yourself.

My sincerest best wishes and hugs to you.

Linda x

https://www.sciencefocus.com/the-human-body/dr-michael-mosley-deep-breathing/

Don't know whether this is any help to you at all Lyn to get you started?

Linda x

Good evening Lyn, i have never suffered any side affects from any of my medication, the only time i had hallucinations was when my Dr prescribed some anti-depressants but it was soon sorted with a different medication. When i had my lower jaw reconstructed with a bone from my leg i found the recovery to be pretty good, its just getting over the first 4 days that were worst as i did not feel like doing anything but once that period had passed i just tried keeping myself occupied, mainly with my laptop, crosswords and books. 

I agree the tracheostomy was not very pleasant as i always found it uncomfortable due to mucus build-up and the suctioning so it was a big relief once the trachy tube was removed as i found i could control the mucus build-up, plus giving me more independence so i could get up out of bed. I was very lucky as i had my own little room which had a tv and shower room plus a window with a view of the hospital grounds. 

Hopefully, you should be offered some sort of dentures, i had implants fitted that the dentures clipped onto giving me a set of bottom teeth although i had to wait 18 months so the new bone was well established.

You will find your leg will be a bit hard to walk on for a couple of weeks, i had crutches when i left the hospital and used a wheelchair if needed. Its surprising how well the leg/foot copes without the section of bone, i can walk ok on it without any help. 

I know its always a worry going through another operation but the way i looked at it was that this time next year i would be in a better situation, it was not always easy but definitely worth putting up with the little set backs. Wishing you all the best , please feel free to come back with any questions. Take care.

                                                                                  Chris x