New to the Community

If you've just joined the Community and aren't sure where to start, this is the group for you. Tell us what brings you here, and don't be afraid to ask questions. Someone will be on hand to welcome you and point you in the right direction.

My husband has just been diagnosed with Bowel Cancer

Di57
Posted by

Unfortunately, we were told today that the cancer had spread to the liver and that the only course of treatment was chemotherapy. We are awaiting our first appointment with the oncologist. My husband is 66 and we have no children.  I suppose my question is; what sort of questions should we be asking the oncologist?

I am a regular monthly donor to Macmillian in memory of my niece who died in 2008 from secondary ovarian cancer at the age of 36. 

I want to try and stay positive for my husband - thankfully we have had nearly 5 years of happy and fulfilling retirement - any advice you can give me would be much appreciated.

Di 
buttercup01
Posted by

Hi, suggest you post your question to "Ask a nurse" or ring the  helpline on 0808 808 0000 , 8am to 8pm 

You could also join the Bowel cancer and Liver, secondary cancer groups to get support from folk in a similar position to your husband. For yourself, the Family and friends group might be helpful.

I'm just an ordinary member who spotted your post ,  but   a community champion  will be along shortly to welcome you n give you a few pointers re using the site. Meanwhile,you might want to add a bit to your profile to let ppl know more about you?

Whatever questions you ask, make sure one of you writes the answers down to refer to later. It's all a bit if a blur at the time. 

Fear of the unknown is the worst thing. Once we know what we're facing, we find the strength to deal with it.
latchbrook
Posted by

Hi and a very warm welcome to the online community

I'm very sorry to hear that your husband has been diagnosed with bowel cancer that has spread to the liver and it's perfectly normal to want to find out as much as you can about it.

One of the best ways is to talk to other people with this diagnosis so I'm going to recommend that you join the bowel cancer group and the secondary liver cancer group. With both of these groups you can ask questions and share experiences. The people in those groups will be able to give you tips on what sort of questions to ask when you first meet with your husband's oncologist.

To join these groups just click on the links I've created and then choose 'join this group' on the pages that open. You can then introduce yourself or post a question after selecting 'start a discussion' or join in with existing conversations by clicking on 'reply'.

When you have a minute it would be really useful if could pop something about your husband's journey so far into your profile as it helps others when answering or looking for someone with a similar diagnosis. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Edit Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.

x

 "Never regret a day in your life, good days give you happiness, bad days give you experience"

What is a Community Champion?

Di57
Posted by

Many thanks for your very helpful advice.  The diagnosis today was a bit of s shock, so just trying to absorb information so I can help my husband as much as I can. Di 

Di 
Bodach
Posted by

Hi Di

I'm so sorry to hear the news you received today but I am so pleased that you found the time to reach out to us, with so many friendly people on this forum you can be assured of all the support, help and advice you may need and to share their experiences with you.

All the members will be on hand to answer any questions to help you on this journey. 

You asked about Questions to ask the Oncologist I have put together the following for you, the questions are the same no matter which type of appointment you are going to and you should tweak the questions to suit your needs.

I'm sorry the following is a very long response but if you're ready and settled down with a nice cup of tea here we go

Be prepared for the appointment 

  • Leave early  parking at hospitals can be a nightmare 
  • Take your questions
  • Take a notebook and a few pens
  • Both husband and yourself should have a copy of the questions you want to ask

Checklist of questions to ask at your appointment

Tests, 

such as blood tests or scans

  • What are the tests for?
  • How and when will I get the results?
  • Who do I contact if I don’t get the results?

Treatment

  • Are there other ways to treat my condition?
  • What do you recommend?
  • Are there any side effects or risks? 
  • If so, what are they?
  • How long will I need treatment for?
  • How will I know if the treatment is working?
  • How effective is this treatment?
  • What will happen if I don’t have any treatment?
  • Is there anything I should stop or avoid doing?
  • Is there anything I can do to help myself?

What next

  • What happens next?
  • Do I need to come back and see you?
  • If so, when?
  • Who do I contact if things get worse?
  • Do you have any written information?
  • Where can I go for more information?
  • Is there a support group or any other source of help?

Top tips

Before your appointment

  • Write down your two or three most important questions.
  • List or bring all your medicines and pills – including vitamins and supplements.
  • Write down details of your symptoms, including when they started and what makes them better or worse.
  • Ask a friend or family member to come with you, if you like.

During your appointment

  • Don’t be afraid to ask if you don’t understand. For example,‘Can you say that again? I still don’t understand.’?
  • If you don’t understand any words, ask for them to be written down and explained.
  • Write things down, or ask a family member or friend to take notes.

Before you leave your appointment

Check:

  • You’ve covered everything on your list
  • You understand, for example ‘Can I just check I understood what you said?’
  • You know what should happen next – and when.Write it down.

Ask:

  • Who to contact if you have any more problems or questions
  • About support groups and where to go for reliable information
  • For copies of letters written about you – you are entitled to see these.

After your appointment, don't forget the following

  • Write down what you discussed and what happens next. Keep your notes.
  • Book any tests that you can and put the dates in your diary.

Ask:

  • What happens if I’m not sent my appointment details?
  • Can I have the results of any tests? 
  • If you don’t get the results when you expect – ask for them.
  • Ask what the results mean.

Questions  checklist leaflet

McMillan leaflet

The important thing to remember is to ask you questions it is amazing how many people leave an appointment and are sitting in the car all asking the same question, "What did he say about..." or "I wish I had asked......" this is your time to get information, ask everything you think you need to know.

In the bowel group you will hear this said often, "There is no such thing as silly/stupid question, only the one never asked" if you have a question rattling around in your head, ask it, get an answer

I hope you this of interest and helps when you attend the appointment.

Please let us know how you get on at appointment and keep in touch as you progress in your husbands journey

I look forward to welcoming you into the Bowel (colon and rectum) cancer group in the near future our door is always open, no need to knock just come in, we're waiting to give you support, see you soon.

if I can be of any further help please give me a shout out in the bowel group.

Ian

By clicking on any of the green text above will open up new pages for you.

With a Stma Care and Management Certificate 

My Groups ● St●ma Support ● Bowel ● Carers ● Anal ● Family & Friends ● Bereavement ● Diagnosed at a Young Age ● Parents of Young Children ● New to the Community

You can call The Macmillan Support line on 0808 808 0000 every day 8am to 8pm

What is a Community Champion?

 How to update your PROFILE

The Bodach is LIVING WITH A ST● MA

Di57
Posted by

Dear Ian

I've just had my morning cup of coffee, so took the opportunity to read your message.

Thank you so much for the information you have provided. It is much appreciated and really useful.

We have received a letter this morning for my husband to attend an appointment with the oncologist at the  Woolverstone Macmillan Centre at Ipswich Hospital next Wednesday, 21st August @ 10.30 am, so will update thereafter.

With best regards

Di

Di