On Wednesday i went to the macmillan centre in Saint James hospital in Leeds for my first bereavement counselling session.While i was there i picked up a leaflet asking for the views of head and neck cancer patients or their carers regarding the needs of patients post TX.They have received a research grant from Macmillan Cancer Support.I have received an E- Mail today asking me to take part,and i thought it would be a good opportunity to pass on the observations of all of you who were concerned about your aftercare in the period following end of treatment.

If you would like to e-mail me your concerns ,i will correlate the information and print it out,then i will take it with me.

This is an opportunity to have your say,so even though this study is based in the UK i am sure the findings will be published in relevant journals across the globe.

look forward to hearing from you

love liz

Hello Liz

Do check out the polls as they do give an insight into some of the concerns. Come on guys, let's hear your ideal support scenarios.

... don't forget to tell them about the great job we do here ....

Best wishes
Vinod

Vinod!!!!as if i would.I was at the radio station yesterday and they would like your contact details re:mouth cancer awareness week .could you send them to me?

love liz

Hi Liz

Please contact Vicki (or Liz Ayto) at Media Ambitions next week (they have the Walk to worry about at the moment) and give them the details of the radio station. I will be in a sound studio doing a radio press conference for Mouth Cancer Awareness Week on Monday 17 Nov morning to allow all interested radio stations to call in if they wish an interview.

Contact details:
Vicki Walker-Wright
Production Manager
Media Ambitions (Enterprises) Limited
+44 (0)20 8940 2222
+44 (0)20 8940 2250
vicki@mediaambitions.com
www.mediaambitions.com

Thanks, Vinod

Well Vinod

seems like every one here is happy with their after tx care.I have had two e-mails which i will take with me when i go.

liz

I'm not all that happy about my dad's after care....

He finished his chemo and rads (7weeks) and I must say did pretty damn well but then his next appts were three weeks out and they just "drop" you inbetween. He got dehydrated and we were all encourageing him to go to the hospital for some fluids but he desparately did not want to go - he did not want to get poked by another needle - but if he had had an appointment he woudl not have questioned it - well this was a Friday - he decided to wait until Monday - by then it was real bad - blood work bad - had to go in every day for fluids and shots of B12 - now he is doing MUCH BETTER - just a simple phone call or email from the docs or an offer to come in for fluids or just make it mandatory - that one bag on Friday may have have saved him a week of pain - I was REALLY worried last Tuesday - he looked awful and mentally it was not good for anyone.....

Hi Liz
Hope I'm not too late with this. My main concerns were that the doctors only focused on my physical recovery and seemed to think I could just put it all behind me and get on with my life. They didn't understand I had lost confidence because I had facial scarring and my voice was different. I refused anti-depressants and no one ever mentioned counselling. Eventually I self referred to a MacMillan run cancer support unit who gave me the counselling I needed and referred me to a psychiatric nurse who helped me tremendously. I know the NHS is stretched but psychologial after care is SO important.
Sheila

Hi Liz

I didn't really have any complaints about my physical after care but as a psychologist myself I do agree with Sheila about the importance of psychological care and that the NHS does not offer enough psychological support to people affected by head and neck cancer. An ex-colleague of mine who specialised in oncology offered me support (had to travel from Leicester to Manchester to see her as she had moved) so I was really lucky. I also got loads of support from this website but I had to find it for myself. I believe that there may be some sort of support group attached to the ward I was in for my operation, but I wasn't told anything about it and wasn't feeling strong enough to find out about it when I was discharged. My physical care has been fine - I have been encouraged to ring up or go along to max fax any time I am worried and I have been seen frequently enough to be reassured. But the main thing I would say is that people need more information about what support is available and more counselling/psychological support to be available on the NHS for everyone who needs it.

Thanks for doing this!

Best wishes
Gwyn

Hi, Liz,

I would agree that aftercare doesn't seem to be quite so well-organised. When I finished my r/t, I was fortunate to speak to the nutritionist at the hospital who suggested a referral to the Macmillan nurses at our local hospice (Phyllis Tuckwell hospice in Farnham).

My nurse, who has very sadly passed away herself through cancer, was extremely supportive both in terms of providing practical help with eating, pain relief etc and emotional support. It was through her that I was later referred for counselling at the hospice itself and she also picked up on the fact that I was becoming depressed and spoke to my GP about this (with my agreement, I hasten to add).

She and the others at the hospice really were excellent but I do really feel that the approach to aftercare is a bit hit and miss. If I hadn't asked about support during that last session with the nutritionist, I don't know whether anyone else would have suggested referring me. Like Gwyn and Sheila, I do feel that the psychological care is really important but it is something that wasn't really mentioned by my consultants who tend to focus far more on the physical.

Hope my comments are of some use.

Best wishes
Sue