New to this site and this group, my mum was diagnosed with cancer about 3 weeks ago following a large lump growing on her tongue. Everything moved so quickly from that point and my mum is currently at day 5 after a glossectomy and reconstruction and neck dissection. The surgery lasted nearly 17 hours and unfortunately due to spread of the tumours mum had to have most of her tongue removed. They also took a number of glands from both sides of her neck.
Due to current covid restrictions I have only seen her once the day after surgery on ICU. Since then she has moved around wards, is recovering well but has struggled with her tracheotomy and with upset stomach due to the nasal feed.
she has her phone and we have FaceTime’d once but she is not very responsive to text messages and has not always made a lot of sense over messages.
I am really worried about how she is coping- not really physically as the nurses keep me updated- but mentally dealing with the changes and the after effects of the surgery. I feel so helpless and just don’t know how to support her for the best. I send a few texts a day and send her pictures to try and keep her spirits up but rarely get a response. I have tried talking to the nurses but they got very defensive over my concerns, and I have no doubt they are caring for her amazingly, I just feel so distanced from what is going on.
Would really value any insight from people who have been through similar or supported someone through a similar experience.
I'm sorry to read that you're worried that your mum isn't coping well after her recent surgery and it's natural to want to try and do all you can to help her.
As the online community is divided up into different support groups I'm going to recommend a couple for you to join. The first is the head and neck cancer group where you can connect with others who have had a glossectomy, reconstruction and neck dissection. The second is the family and friends group where you can chat to others about the best ways they found to offer support.
To join either or both of these groups just click on the links I've created and then join and post in the same way as you did here. You can also respond to any existing posts by clicking on 'reply'.
It would be great if you could pop something about your mum's diagnosis and treatment so far into your profile as it really 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 '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.
I am in a similar situation and just wondered how you and your are , I hope this finds you both in a much better position