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Beesuit thankyou xxx

Hi, Bev

My cancer was a squamous cell carcinoma on my gum. The cancer was removed along with a rim of jaw bone and a free flap from my wrist used for reconstruction. I also had a neck dissection and tracheotomy.

This was an 8 hour operation, so quite challenging. But about 9 months on my recovery has been good. I can eat and speak normally, but still have some slight stiffness to neck and a bit of facial puffiness caused by oedema.

If you have any questions please ask.

Wishing your son all the best. Cathyxx

Hi cathy 9 months seems seems such along time ago I'm so pleased your doing well. I'm struggling to come to terms with it all he seems so young I'm also trying to manage expectation as he thinks let's get it done and get on with life which is admiral but I dont want him to hit rock bottom. What should we expect. Consultant says remove tumor and also some gum bone plus lymph nodes then fit temp tracheostomy and feeding tube. Is this what you had done if so how did you get on xx

Thankyou for your help xc

My cancer was on the lower mandible rather than the cheek. But your son’s operation sounds similar.

The tracheostomy is just a precaution in case of swelling to mouth post op. It means the patient can’t talk when they first come round, but there will be a board and pen to write on to communicate. There is a sort of collar put on the tracheostomy so it is possible to speak with that. Once it’s all removed it heals up and my scar is barely visible now.

I had a nasal feeding tube in hospital, but by the time I went home I was on liquids. I was given Fortisips, but progressed to soups and smoothies. I had some teeth removed too, but I can now eat normally, although I avoid anything really hard or chewy.

My speech and jaw opening were affected, but with therapy both are now pretty much normal.

The neck dissection can affect some nerves, and there is initial numbness to the face, and arm/shoulder movement is affected, but with physiotherapy this returned to normal function.

My free flap was taken from my wrist, and there was some initial numbness and a bit still feels a weird, but it has healed up well.

My experience is that it does take time to recover from this sort of operation, and you are left with some lasting effects, but it was not as bad as my initial fears. I’m essentially back to my normal life, with just a bit of oedema as a result of removal of lymph nodes and a bit of neck stiffness. 

Thankyou so much for your in depth detailed account of your procedure. This sounds exactly what the consultant as discussed with my son. From the MRI and scans it hasn't spread thankfully. But the surgon as a preventive measure wants to remove some lymph nodes in his neck and get them checked. If you dont mind me asking how long was it before you was up and about doing simple things and able to eat normal. Work is giving him 6 month's off I know he's concerned because he as a young family. It's so reassuring to know you have come through the other end and doing really well. Is there anything you can say to look out for or help with recovery. I really appreciate the time everyone gives in this group.

It’s very good news that the scans show no spread. Hopefully the lymph nodes will be clear too.

I was in hospital for a week on a nasogastric tube. But by the time I was discharged I was onto the Fortisips drinks. I think it was a good month before I managed more than soups or smoothies and two months before I could eat a wide variety of food. I lost two stone over the period of diagnosis until I was eating properly again, some before the operation because of anxiety and loss of appetite.

I recommend a liquidiser for food in the first few weeks at home - something to make soups and smoothies out of nice, healthy fresh ingredients.

I wasn’t able to drive for a couple of months after the operation, because it took a while for the swelling to go down and to get my neck to turn enough.

I would say your son will definitely need some help and care for most of the first month at home. Wounds need to heal, and strength to return. If all goes well, I think going back to work (assuming the job isn’t too physical)  after six months is a reasonable objective.

I think I was very sleepy the first week home from hospital, but I was up and about pottering around the house, but my adult children did come to look after me, bless them. Having young children is more of a challenge.

Having something to keep him more upright in bed immediately after the operation is useful, to help reduce swelling and oedema.

Your son should be offered advice from a dietitian, a speech therapist and a physiotherapist in his recovery period who will help get him back to as close to his pre-op level of function as possible. 

It is said that you need roughly a month of recovery for every hour of surgery, and healing does continue for up to eighteen months, but most of the recovery, in my experience, happens in the first two months.

I’m in my fifties and otherwise in good health. Your son is younger. Both being younger and fitter help with recovery.

I used a soft scarf around my neck, and still do, to hide the scar and a bit of residual swelling, but this is a personal thing. There is obviously some change in appearance, but not as much as I feared. I still have a slight wonkiness on one side of my mouth when I talk, but I’m quite comfortable with that now. I think the neck dissection can damage nerves, but these do seem to recover gradually.

I should add a word about mouth opening and trismus (limited jaw movement).

The combination of the neck dissection, which can affect nerves, and an operation in the mouth, does affect how much the jaw can open immediately post op. I could only manage a teaspoon and a baby toothbrush when I first got home.

There are jaw exercises recommended post op, and I can now use a normal toothbrush and cutlery although I still can’t get my teeth round a bread roll or a bun like I used to. 

So expect some limited jaw movement, but this did gradually improve for me. Obviously my partner says that there is no part of me that gets as well exercised as my jaw, because I do love chatting!

Sorry if I repeat some things in my posts, I just try to get things down in order as I remember what happened and the course of recovery.