I learn a lot from my inquisitive child.  Never to give up if the answer I get doesn’t  make sense, to re-frame the question or wait to ask the same question at a different time or even to give the answer and ask the recipient what they think of the response (Roscoe is particularly good at this!)

So I’m sharing some of the questions related to my mouth cancer which I’ve asked in the hope that they are useful for others in similar circumstances.

Initial Consultation

• Tell me, in simple terms, what it is?
• What is the best way to treat this for complete cure/eradication?
• What is the length of this proposed treatment?
• Are there any alternatives and if so what are they?
• What are the pros/cons of these alternatives?
• What are the side effects of the treatment you propose?
• What is my survival success rate if we go ahead with your proposed treatment?
• What are the long-term effects as a result of this treatment?

2nd Consultation

• Will my HRT patch cause an issue, if yes, what is an alternative solution?
• How does the tongue work ? (I asked this because of my mouth cancer and I wanted to start visualisation and memory recall)
• What are the odds/chances of me needing a tracheotomy?
• What can you do to avoid me having a tracheotomy?
• What level of scarring will there be?
• Where exactly will you take skin grafts from, are there any options on this?
• How many dressings and wounds will I have immediately after surgery?
• Will I need a feeding tube?
• How much pain relief will I be given?. Can this be self-administered?
• Will my taste buds be affected?

During Surgery

• How much physical manipulation of the body is there likely to be?
• Which part of the body will have the most trauma?
• What risks are involved?
• What can I do now to enable the operation to be a success?

Post surgery

• How do I communicate with the nurses if I’m unable to speak after surgery?
• What can I do to help the healing process?
• Are there any spousal counselling services available?
• Are there any camouflage make up sessions available?  (asked because my scarring is visible)
• How much speech therapy can I have?
• What guidance can they give to stop a re occurrence

– dietary guidance

– lifestyle guidance

– well-being guidance

• How often will my dressings have to be changed?
• Can the dressings be changed locally?
• How long is it likely to be before speech returns to normal?
• When can I drive?
• How often do I see the consultant surgeon?
• How often do I see one of his team?

On returning home

• What changes in my mouth do I need to look for that should have me worried?
• What medicines do they give me to take home to manage the pain?
• Can I get my neck wound wet? (I was worried about hair washing!!)
• When will the plaster cast on my arm come off?
• How do I best protect the arm wound?
• How do I minimise the scar damage?
• Do I need a special cushion for being in the car?
• When do my neck stitches/arm stitches/tummy stitches/ mouth stitches come out?
• When will we have a longer term prognosis?
• Who do I call if there is a problem?