Mum newly diagnosed.

Hi  and welcome to the Online Community, although I am sorry to see you finding us and so sorry to hear about your mum.

A cancer diagnosis can bring a lot of stress, confusion and questions on all the family but from my long experience, talking with people who are on the same journey can help a lot.

You don’t say what type of cancer your mum is being investigated for but if you look through our various Cancer specific support groups you will find a place where you can talk with people on the same treatment journey as your mum.

We also have these forums where you can connect with others supporting family and friends through their cancer journey: Carers Forum  and Friends and Family Forum.

Follow the links above and join the groups by hitting the ‘Join the Group’ tab just under the main group name and it is worth indicating how you want to receive email notifications when someone answers your posts.

Go to the 'Start a Discussion' tab just under the main group name and set up your own Discussion and introduce yourself to the groups.

You may find our various Macmillan Support Line Services to be helpful - call them on 0808 808 00 00This free service covers Emotional Support, Practical Information. Clinical Information, Financial Support and Work Guidance mostly open 8.00 to 8.00 but check the link.

We also have our ‘Ask an Expert’. section where you can post questions to our mostly Volunteer Experts but please allow 2 working days to get a reply.

Our Online Information and Support Section  is a good place to find information covering cancer diagnosis, treatments and pages covering most types of cancers.

Talking to people face to face can help a lot so check to see if you have any Local Macmillan Supportin your area or a Maggie’s Centre as these folks are amazing.

When you feel up to it try putting some information in your profile. This really helps others when answering. It also means that you don't have to keep repeating yourself. Just click on YOUR username, select 'Edit Profile'. Put as much or as little in your profile and you can amend it at any time - you can see members profiles by hitting our forum names.

All the very best.

Thehighlander

Thank you so much for the reply that was packed with lots of information which I will take a look at. Posting me in the right direction. That was much appreciated. My mum has been having the tests done for mouth cancer but under ENT departments. 

All the very best to your mum but to you and the family as well. Having been on my Cancer journey for 20 years clear information is key, as with this you can all plan to get through this.

I would always recommend you get a family note book. The note book is the place where you record EVERY question that comes to mind. The note book goes to all appointments and when the Consultant says ‘have you any questions?’the note book comes out.

A lot of people freeze at this point and are overwhelmed by information. So you can say ‘yes we have some question’you go through each question one by one, making sure you write down all the answers you get. If you don’t understand something you stop the Consultant and ask them to put into language that you understand and remember the record everything they say and again if you don't understand, fold your arms and say 'explained that so we understand' You don't want to be going home after an appointment saying 'I wish we has asked ........'

The note book also helps your sleep!! As these questions often come at silly-o’clock so get the note book out and write the thoughts down and park them - it does help a lot and I would always recommend that there should be two people at appointments as two pair of ears take in far more and the onlooker will catch the stuff the patient will not hear.

The note book should have questions like:

What type of condition has been diagnosed? - exact name and grade etc.

What are the proposed treatments Chemo, Radiotherapy......?

What are the names of the Chemo Regime?

How many cycles of Chemo and how long will each cycle last?

Does this require inpatient time (over night)

How many sessions of Radiotherapy and how long will all the treatments take?

Remember to express any reservations about treatments........ an example - I have Thoratic & Lumber Spondylosis - Spinal Osteoarthritis so I found out in the early stages of my radiotherapy that I had to take some pain killers an hour before I had my treatments as I found it hard and painful to lay on the radiotherapy table for long periods of time.

((hugs))

Turns out went and bought some new notepads for starting my course at a distance learning college so will use one of those to be the appt book to keep details and any information we are given. Will also keep records of questions and take notes. Have so many questions racing round my head so making a note of them can hopefully ease my mind that it will get answered when we go back to the hospital. Will also add in the ones you mentioned. It’s sure frustrating when doctors talk in their lingo and means nothing to the patient or the family. 

I feel so bad that I didn’t go to the appts with her to get her results from the biopsy due to me not being well. 

Also have the cancer nurses direct number rather than going through switchboard which is stored on the fridge. Will also put their numbers in the book just in case we need it whilst around hospital or to arrange things that might need to happen. 

I also have severe health anxiety so will search all the terms to understand yet if it was broken down to our lingo it will help greatly. 

Again you’ve been very helpful and these tips will be used. Feeling really supported by your messages. Thank you so much. 

Sending ((hugs)) to you too. 

Good morning and today is a new day.

One of the secrets of getting through this is to take each day as it comes, you can’t do much that can change the medical side and the treatments that will come along, but controlling the mental battle is one area that is in your hands. As a very famous man once said “Fail to plan is to plan to fail” and this is so true. So keep your eyes on the greater good in all this.

Sorry to hear that you are not well but having the phone number of her Cancer Nurse Specialist can help a lot as these folks are your new best friend. They can put what you don’t understand into a language that you can understand and a great place to ask questions.

I see you have found the Support Forums I highlighted and remember to join the best Cancer specific support groups as this will be the best place to get information and support from folks who are walking or have walked the treatment journey.

Make sure that you do check our various Macmillan Support Line Services on 0808 808 00 00 with regards to check what Financial Support and benefits are available for your mum.

Wishing you all the very best for the weeks and months ahead.

Thehighlander

Morning Mike. 

I am getting to learn my way round the site slowly by surely. Thank you again for your continued support. It sure is helpful. 

Ive never heard of that saying but it rang true to me and will always keep that in mind. 

I know I have to stay strong for her but at the same time it’s so hard. But will know more when she sees the doctor/consultant. 

Going to be focusing on getting the appointments book with notes and questions to take there when we go when I come back from having day surgery today. 

Here’s hoping your day goes ok and sending (hugs)