Hello, does anyone feel like I do that once treatment is completed that we are just forgotten about?? The Radiotherapy of 20 sessions over 4 weeks I went through were straightforward enough with no side effects until 5 weeks after treatment completed. On the 5th week I actually went back to work but after 4 days I almost collapsed with breathlessness and the aches throughout my body were almost painful. So I went back on the sick. That weekend I was having difficulty breathing and had a friend rush me into hospital. My neck had swollen to the point I was being choked! I was on the same night of admission transferred to another hospital where I spent the next 2 weeks. During that period I already had 2 appointments at The Christies one for scan the other to see consultant to discuss results of scan. BUT because I was in hospital those appointments I believe were cancelled by the hospital I was in with a view to renewal but which has never happened. Have you ever tried to contact Christies? The number I was given turned out to be their transport department. Now over the last week my neck is swelling up again but still manageable though I am coughing more. I feel the doctors are not qualified to deal with cancer has their answer these days is to refer everyone to A&E. Obviously should my situation become worse I will take appropriate action. At least I do have an appointment with head an neck department just over a week away and if not heard anything from Christies, can ask head an neck department to make enquiries. They can stick a camera up my nose to see whats going on. Macmillan have been a great help and I volunteer to to Bee-Involved but now feel I can't because of my health. I find no matter how much I wrap myself up and quite extensively I suffer more with fatigue and coughing fits so I now don't go out but for hospital appointments. Thank you for reading and I hope everyone has a better 2025
Hello Phil A
I am Brian one of the Community Champions here on the online Community. Although I don't have Larynx cancer I have noticed you post has gone unanswered so by me replying it will be "bumped up" to the top of the forum and hopefully be seen by other members of the Community and you will get some replies.
I understand what you mean about being in the wilderness after Radiotherapy - after my 20 fractions I saw nobody or had no appointments for about 4 months.
I am under The Christie for my treatment and have had no issues with them - however I have a different cancer and the support service is really good. I am sure if you ring the main switchboard they will be able to put you in touch with the right people.
I wish you well with your condition. If I can do anything else foy you please do let me know.
Best wishes - Brian.
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
Strength, Courage, Faith, Hope, Defiance, VICTORY.
I am a Macmillan volunteer.
Good Morning Phil (Phil A)
i am so sorry to read of the issues you are having - I know the one about fatigue - I have had 3 years on "Hormone Therapy" which reduces your testosterone to castration level and you feel "knackered" all the time. The loss of your voice must be very frustrating and hard to cope with.
I spent 10 days in North Manchester in 2022 and although it was during COVID my treatment was great and the staff fantastic. (details of my journey are all in my profile - click on my avatar to read this). North Manchester and MRI are both members of Manchester University Trust and they use their own mobile 'phone App "My Chart". Once set up you can see all your test results, appointments and you can send and receive messages with your team so it might be worth asking about this next week.
I wish you well with your treatment. I am always about if you need anything or just a chat.
Best wishes - Brian
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
Strength, Courage, Faith, Hope, Defiance, VICTORY.
I am a Macmillan volunteer.
Good Afternoon Phil (Phil A)
Well that sounds like a plan. Let's hope what they find on your voice box isn't too serious and it gets sorted without creating any new issues.
CKD is what got me here in the first place (click on my avatar or name for the full journey). It's taken 3 years to get my eGFR from 8 to 61 and CKD taken off my medical records.
I wish you well with both issues. Keep us posted as to how you get on.
Best wishes - Brian.
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
Strength, Courage, Faith, Hope, Defiance, VICTORY.
I am a Macmillan volunteer.
