Newly Diagnosed -spouse diagnosed with Retromolar Trigone cancer

Unknown said:

Life is so hard for me 

I can only sympathise. Much has gone wrong everywhere with Covid. Again try to push your CNS to arrange a lymphoedema clinic appointment. Most hospitals have them.

Unknown said:

My tongue bass was stage 4 

So your treatment must have been very invasive.

You shouldn't be struggling. I think it might be time to get PALS involved

Have a look at THIS page on PALS It gives you information on how to get the service involved on your behalf.

You can also contact the Macmillan Support Line. The number is at the bottom of my post  There will be somebody to talk too and point you towards further help in managing

Lastly. Do you have a Maggie's near you? It would be worth dropping in there too

Have a look here to find your nearest centre

MAGGIE'S 

Hi John All i can  say is please contact your cns there should be a lymphedema clinic yiuncan be referred to and yiu should se your consultant and express your concerns. 
Hazel 

We are just wondering about the likelihood of returning to a reasonably normal life after surgery if all goes well. We were told about speech, eating and drinking issues etc but how debilitated will he be after his particular type of op?  They said it would be life changing and I know they can't be specific but what is the least incapacitated he will be? Thanks again for any info you have

Jan

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HinJan  I will tag Chris and Lyn who have had similar ops Lyns in her 3 rd op lThey both lead a busy life with friends and famiky am sure they will,pop in soon. Seems like tags not working at mjn xx am sure they will see this post
Please try not to overthink everything just keep focused in the 85% recovery which head and neck cancers can give us. As for me I lead a normal busy life after myn35 radiotherapy and chemo takes time to recover but I go abroad regularly ride for bike walk the hills.

hugs Hazel x

Hi Jan

Glad to hear that things are jogging along with you both and that there is a treatment plan now in place.

Right now don’t overthink things as you can’t be prepared for everything although knowledge is power.

In relation to the question you had about how debilitating jaw surgery is.

As I mentioned in a previous post I have had 2 maxillectomies and a partial mandibulectomy so now only have my original lower left jaw remaining also had 2 lots of radiotherapy. My last op was in Feb this year.

I have not found long term that my operations are debilitating. I can now do everything I used to do with no issues. In the short term during recovery you definitely are not able to do as much as usual but this does pass. You have to give it some time though and there are a few rough spots along the way but you will get through those.

The biggest change I have found is around my eating ability. This may also be an issue with your husband.

I have had to come to terms that I can no longer eat anything with texture so that means no more steaks, bacon and egg sandwiches, roasts. I had lots of help from my speech pathologist and dietician who helped me work out what I could manage. This should be in place for your husband too. Radiotherapy also changes your taste and I now have a different range of foods that works for me and taste quite O.K.

I have to be prepared when going out for meals or to family gatherings and take my own food with me or fill up before I go. I have had no issues with restaurants when I quietly take out my own food and eat it although I always order a drink. No one in my family even give it a second thought now.

I have been on several holidays since my jaw surgeries and have found it is best to be prepared. I take my blender with me and get accommodation that has a kitchen so I can cook my own. When I go out during the day I then take my own with me. I have a small car fridge which I use to keep things cold. I use a vacuum flask to keep my soup hot. It works out fine.

If there is no accommodation with a kitchen I have my own electric hot plate I take with me.

You have to be a problem solver and think ahead around food but it definitely does not hold me back from doing anything and I’m sure your husband will be the same.

It is early days so hang in there. There is a good future coming for you both.

Lyn

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Hi Lyn thank you for kind words of encouragement for Jan. Ince again your advise is much appreciated. 
hugs Hazel xx

Lyn I do hope you're right that we have a good future to come. It's so overwhelming though. I know you said trust the team but I keep worrying about the lymph glands and whether the cancer is there. The consultants said they can see no cancer in them after the scans and by feeling around the neck but it is only when they are removed they will know for definite.  I feel ill with worry that it will have gone to the lymph nodes between now and 16 January when the op is supposed to take place. They said that's unlikely but how do they know that?  Also they said no ICU bed no op and that is terrifying as well along with the thought that he will have to go through the surgery only to be told it has spread to the lymph nodes or even worse beyond there.  I have taken a lot of comfort from the advice you have all given me on here but my brain just keeps going back to these worrries which might turn out to be the reality for us. 

I admire you all for how positive you are and I wish I could get to the same state of mind but I can't at the minute.

Jan

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immy1 said:

terrifying as well along with the thought that he will have to go through the surgery only to be told it has spread to the lymph nodes

Jan. Radiotherapy will take care of any stray cells in the lymph nodes. I didn't even have a neck dissection but I did have radiotherapy targeted at my neck as well as the cancer, even though there was nothing on my diagnostic MRI.

I know it's hard but catastrophizing will only make you feel worse. It is difficult but being down a rabbit hole doesn't help you or your husband. 

You can't do anything about what's happening. Being out of control is one of the worst things about it all, but really, you do have to trust the only people who can help

Hugs

I know Dani. I keep going on don't I when I should'nt? That is exactly what my hubby says that it's not within our  control and what will happen will happen but he said he doesn't feel this all the time. I know it's not doing me any good catrastrophizing it's just my stupid brain keeps doing it.  It is crazy because the times when I am able not to do I do feel less miserable.  I'll get a must try harder on my report for this year! 

Thanks

Dani xx

Jan. Do you think you might be encouraged by a little extra help?

You could ring the support line and chat with somebody trained to help better than me.

The number is at the bottom of my post