Hi, i was referred on 10th July under the 2 week diagnostic NHS pathway and 7 appointments later.

I am awaiting full diagnosis even though my ENT consultant has already booked me in for surgery and lymph node removal. I wI’ll also have radioactive iodine treatment to follow.

Due to location, there have been 2 attempts to take biopsies and his most recent letter says i should prepare for a third on 5th Oct. He told me that’s its very certainly clear from the location and structure of the growths found that they are malignant because this pattern is never usually benign, But I must now wait for results of cytology and the PET CT scan I had on Tuesday - which will be given to me on 5th Oct, 11 weeks after referral.

I am physically feeling exhausted and my neck and clavicle is swollen and uncomfortable. I am struggling with the timescale and enduring uncertainty of both the cytology and the surgery date.  - Longpost Lil, aka Curlew, ADHD. x 

It's really hard dealing with physical symptoms alongside the stress of everything. Sorry to hear that you have so many ongoing tests, biopsies etc. waiting for results and things to happen is the hardest I've found. Hope you can take it one day at a time and at each stage, things become a bit clearer and they can make the right decisions for your treatment. 

Hi Curlew ,

It's Emma here from the online community team. Sorry to read of everything you are going through. The uncertainty is a really common difficulty, especially for neurodivergent people. Do you have much of a support network around you at this time?

If you haven't yet read Alison's Story it contains some helpful insights for managing the challenges of being neurodivergent and going through diagnosis and treatment. 

I hope that is helpful. Take care,

Hi Curlew, 

I'm really sorry to hear you are going through so many tests and uncertainty.

I found it worse waiting for treatments to start than when they actually happened. Really stressful anticipating what is going to happen, once the treatments started then i felt less anxious. 

Hope you can take each step as it comes. If there is anything you find for you that can distract you from the physical symptoms and the anxiety, if you can do that it may be of  help. Whatever works for you, just to take your mind off it all a bit. 

Wishing you all the best and hope you have some support around you. 

Sharing Successful AI Agent Help

I felt and still feel deluged by information. Medical letters, "helpful information leaflets" and my own research.

I am on my own with none to support making things extra difficult. 

I created a Claude based agent to help me. I save everything to an inbox (photograph and save it if needed) and have the agent transcribe and file everything. It then has to complete the tasks below. 

I'm sharing the idea in case the principle is useful. For those that can use it, I will put it on github. 

Tasks:

1. Update a timeline with events, results, my thoughts and feelings. It reads this at the start of every session so it remembers and accumulates. It answers in my specific context, my cancer type, the NHS, my age, my stage of treatment rather than providing generic advice. The timeline means the AI doesn't start fresh each time. 

2. Adds dates to my calandar and works out travel times. 

3. Based on the timeline compares this to what should be happening on the nhs pathway and suggests when I need to chase and who to contact for help. 

4. Logs all of the health staff I meet and what they do. I have been bouncing around between different centres so it logs all of my patient numbers, treatment dates, blood tests as we go. 

5. Based on all the notes I prepares an update and questions to ask before each appointment and can draft any follow up emails with full context. 

6. I write to it with my feelings. These are then analysed and tracked - I can see how I am doing objectively. 

7. It collects my smart watch data. It can see my sleep patten and can tell me height, weight etc when a Dr asks. 

7. I have a "weekly meeting" with the agent where I log all non hospital issues. It is primed to ask me questions during this meeting to check my wellbeing - sleep, eating, excercise etc. 

It is specifically asked not to diagnose or challenge the diagnosis. Instead it is asked to support administritivly and highlight any changes in me week-week. The point is to help and coach me. The medical-oncology team are doing the treatment and decisions. 

I struggle with administration. It's doubly difficult when tiered, emotional or weak. The agent doesn't fix cancer or how I am feeling but prevents a disorganisation problem and gives me a place to focus on the issues. I can switch it off knowing everything is captured and processed. 

It has been a place to dump everything and vent when needed. Not the same as a human but does OK in the absense of anything else. 

My agent has a complex memory structure supporting it. But a simple approach could be effective - save everything to a folder and asking ai to read it before responding will help the responses be specific to you. 

Do check the privacy settings before you begin. 

Best of luck with your journey. 

Girlfriend is deaf now been diagnosed secondary cancer I'm scared bad

Hi Bbbb, 

It’s Megan here from Macmillan’s Online Community team. I am sorry to hear about your girlfriend’s diagnosis. It’s natural to feel a range of emotions when a loved one is diagnosed with cancer, so I am glad you have found our Online Community. We are here to support you for as long as you need. 

All our forums are dedicated spaces to chat to others, ask questions and share personal experiences. We have the Family and Friends forum you are also very welcome to join and post in. What type of cancer has your girlfriend been diagnosed with?

I also wanted to take a moment to tell you about the Macmillan Deaf Cancer Support Project that you and your girlfriend may find helpful to access. The Macmillan Deaf Cancer Support Project provides virtual emotional and practical support to Deaf people living with cancer across the UK. It also supports carers, including Deaf people who are supporting a hearing person living with cancer.

There is more information on the website about the support available and how to access it: Macmillan Deaf Cancer Support Project.

Please remember that alongside accessing support via the Online Community, the Macmillan Support Line teams are also here for you. Sometimes it can help to talk things through with someone who’s there to listen. They’re available 8 am to 8 pm, 7 days a week, on freephone 0808 808 00 00, by email, or via live webchat.

I hope the above all makes sense, and if you have any questions or need help using the site, you’re welcome to send us an email at community@macmillan.org.uk, or you can send a private message to the Moderator account.

Thank you for sharing Callie 10. It's good to hear you have found a useful tool to help manage all the information and admin.

AI is a trending topic at the moment, so it's encouraging to hear about your positive experience and that you had boundaries in place so that no worrying or misinformation could be shared with you about diagnosis and symptoms. 

I do hope you are finding connecting with others in the Online Community forums to be helpful. If you need any help with using the site or finding additional support, please email community@macmillan.org.uk, or you can send a private message to the Moderator account.

Hi everyone,

You may be aware that October is the awareness month for both dyslexia and ADHD.

If you have experiences with cancer as someone who is diagnosed with ADHD or dyslexia it would be great to hear from you. Specifically, it may be helpful for others to know some of the challenges but also helpful tips and tricks for managing cancer alongside neurodivergence.

Take care

She has an appointment on the 22/10 to discuss results. Does it take that long or have they already come to a conclusion 

 Thanks