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?
Hi Laura,
Found your blog from Mouth Cancer Foundation Support online group. I hope you are doing well these days.
My husband just recently was diagnosed with tongue cancer with Left neck lymph node mets. He will be going for TORS (transoral robotic surgery) in a week plus a neck dissection. I’m scared but I’m keeping it under control, but I worry about his attitude. He is a realist but he can also be very negative. I try to talk with him about having a more positive attitude as I feel negative energy breeds negative outcomes. I have never received news that I had cancer, so I can only imagine how devastating it must be and difficult to be positive. Do you have any suggestions for me on what I can say or do for him in this week before surgery? I appreciate any feedback you can give me.
I am scared,
Thank you
Gigi
Hi Gigi
My apologies for the delayed response, not least as I know that what you are experiencing now, means the days are much longer and more stressful than before. Of course you are scared – what you are facing is scary and finding your role and your place of support in this adventure will take some time.
If you filter on my blog site by clicking the changes created by the cancer adventure tab on the left hand side, you will find all of the posts I wrote about our experiences in those early days. Some of what we did may, or may not, work for you and your husband. Also, inspired by your question, I have just posted a new blog post called “in sickness and in health” – a bit of a lessons learned nearly 9 months down the line for us. I’m hoping this will also give you some insight.
Aside from all the planning and organising and communicating that needs to be done in the week before surgery, I would go for some nice lunches, long walks and spend a night getting uproariously inebriated. In short have some fun. You will come through this together. Have trust and faith in the very specialised team around him. And, on the day of the surgery, which will be very long, organise to see some family/girlfriends – do something which keeps you occupied, avoid being alone. My husband aged a year in one day and I cannot imagine what he went through during this time. So my biggest and most important piece of advice is look after yourself, so you can look after him.
Stay in touch, and remember as long as one of you is positive at any given moment, you will be fine.
much love,
Laura xxx
Gigi
I’ve had a quick look back – read the post called “lists” – it may be helpful!
Laura
xx
Thank you so much for your reply. I have started reading your blog and just finished “In sickness and in health” What an incredible man your husband is. I just hope I can be half as wonderful as he. I will keep reading…..thanks for your support. Love Gigi
Gigi, has your husband had his surgery yet?
How are you both doing?
Thinking of you.
Laura
x
Actually he had the surgery on Tuesday. The biggest problem is the collection of phlegm in the back of his throat. It’s giving him horrible anxiety. He continues in ICU. I’ve been staying on hospital campus overnight, but stayed in his room last night with him. I was going to start going home at night and comeback in the mornings but Im thinking I should stay. The doctors say he’s doing well and things in his throat are starting to heal. It’s the feeling of choking thats got him in its grip. I feel so bad for him. I’m doing ok except lack of sleep last night. Thanks for asking. Hope you are doing well.
Hi GIgi, just wondering how you are doing? How is your husband feeling? Sending you both big hugs. Laura x
Hi Laura, thanks so much for checking in on us. Larry finally turned the corner and can drink his 6 cans of Ensure Enliven, to completely replace the NG tube feedings. He’s also eating a little food everyday now, this has been for the last 4 days. NG tube out yesterday and we met with oncologists; medical & radiation. They did spring on us that he will need chemo along with the Radiation treatments. We were positive it was going to be only Radiation treatments so we were taken back with the new news. I feel the life change, but I’m ok with my part. I only hope I can be half of what your husband was/is with you. My husbands voice came back and is almost normal, except for an occasional underwater tone. ?. I hope you and your family are doing well.
Gigi, it’s one step at a time. I’m sure that it was not so long ago that even one Ensure Enliven would have seemed like a Herculean task. Now it’s 6!! Well done Larry!!! It sounds like he’s tenacious enough to get thro the Chemo. He just needs to focus on the goal of being well again. He’ll get there- it requires strength of will, time and patience.
I’m sure you are being a huge support and hope that you are also taking the time to replenish your soul by giving yourself daily breaks and accepting support.
Thinking of you both
Laura
xx
Thank you Laura for your support and wisdom. Keep up your good work and wonderful writings. Wishing you peace, love & health.