Base of tongue cancer

Hi MJR 

This is a good thread on preparing for CRT 

https://community.macmillan.org.uk/cancer_types/head-neck-cancer-forum/f/diagnosis-and-treatment/287136/helpful-tips-for-those-about-to-start-treatment

Children are pretty good at coping and at 14 your son is at the cusp of adulthood  He will likely surprise you  

Just be honest with him  

Your treatment sounds identical to. Mine date wise 

6x chemo

30 x radio

I'm intending to drive for as long as possible 

The chemo radio days will be long 

As for your son 

I'm sure he will be there helping you during the treatment and recovery

Hi MJT and welcome from me.  I think I could have driven throughout treatment.  However as soon as I went onto opioid painkillers I chose to stop driving.  That was at about week 3 of treatment and went through to around week 8 of recovery.

Loz's post, linked by Dani, is great but some other thoughts...

We all seem to react differently to similar forms of treatment so stay with us and ask questions as you go.  Things I found useful were an app (My Therapy) to track meds, a nebuliser and a humidifier - both of which you can get cheaply on Amazon.  A wedge pillow is also useful in helping many sleep.  Depending on your hospital you may find a self made mix of salt and bicarb mouthwash may be in order as some cream to keep your neck moisturised - I used E45 and Aloe Vera gel.

I had a PEG fitted - similar to a RIG - and had absolutely no problems with it.  Others do have some issues especially in the first few days post fitting with trapped wind.  That said the RIG may be fitted differently to the PEG which used air to inflate the stomach and a endoscope.  Keeping it clean and using it as described are key to success.

Good luck.

Good evening MJ, I did have radio and chemo, along with having a PEG fitted after my first operation, which was for floor of the mouth cancer, so slightly different from you. My main side effects were dry mouth and a sunburn-like sensation in the area being treated. Some people suffer from a buildup of mucus, mainly due to not being able to swallow that well, however, it differs from person to person, as I feel I did not suffer that badly compared with others, so fingers crossed all goes well for you. The RIG is the same as a PEG its just that they are fitted in different ways. The RIG can be a bit more uncomfortable to begin with; it differs from person to person and their thresholds. You will find that the RIG will be a big advantage during your treatment, as swallowing will /can be an issue. They are very easy to use and maintain. My two children were roughly the same age as your son, and they coped very well with me having the treatment. We let the school know that i was being treated for cancer, as they can keep an eye on any changes in their schooling. Wishing you all the best for your treatment on the 16th, take care.

                                                                                       Chris x

Hi Dani

Thank you so much for your reply and your blog was so helpfull

MJR X

Hi Chris

Thank you so much for your reply and your tips and info will be extremely helpfull, i am starting on cistplatin chemo but heard some quite bad side effects?

MJR X

Hi Peter

Thank you so much for your reply and information. I shall find it very helpful. I am starting on cistplatin chemo drug but heard some not nice reviews and side effects. Was yours different chemo treatment drug.

MJR X

Hi Nick

Thank you so much for your reply and kind words. 

Im hoping to drive as much as possible apart from maybe the chemo days

I am starting on cistplatin chemo drug but heard some not nice reviews on side effects etc... Are you starting on the same if you dont mind me asking?

I like that....

I have cancer

Cancer does not have me !

MJR X

Cistplatin x 6. Doses to both sides of neck .

Gonna be a hell of a rocky ride 

And my pony is like buckeroo

But I'll get to the end and climb off intact 

Yes I refused Cisplatin and insisted on Carboplatin.  I especially did not want the tinnitus often caused by Cisplatin (although I now have a different form of tinnitus caused by the RT!).  Carboplatin does have some potentially serious side effects, but I had an easy ride with it.  In the end both have almost exactly the same benefits on the cancer treatment, especially when you consider not everyone can tolerate the full course of Cisplatin whilst most go the whole way on Carboplatin.