Hi All,

Well had my check up on Friday and all is well, so well that he only wants to see me every other month. Don't have to go again until 17th July.

Unfortunately, since Friday I have developed a really bad sore throat. I think it's just a cold coming but haven't had a cold since before my operation and the throat is much sorer (is that a word) than Ican ever recall them being before. I will have to keep an eye on it.

Whilst I was at the clinic on Friday my consultant asked if I would have a chat to a polish gentleman who he had just diagnosed with tongue cancer and who was booked in to have the same op as myself. Oh I felt for him and it bought it all back to when I was diagnosed, I just didn't know what to say. I had to speak to him through an interpreter and I just hope that what I said has helped a little.

Sue

Hi Sue,Just wondering how you got on at your appointment.I hope Its good news and you're not to be seen again for 3 months,isn't that what we all feel.I haven't been on the forum for a few days so just checking where everyone is upto.

Hope all is well, Sammy x

hi sue
great that they are pleased with your progress,it's been just over 2 years since my treatment finished and now when i look back i can see just how far i have come.it just seems that time stands still in the healing process.i had a sore tongue and throat for such a long time but i can eat some spicy stuff now but midly spiced if you know what i mean.i remember trying to eat some pineapple 6 months after my rt and the pain was so intense i sobbed for 15 minutes but now i can eat it but not too much.there are a lot of people suffering with sore throats right now and i think it's a virus doing the rounds.anyway look after yourself love shirl xxx

I'm sorry but I have had to come on here to have a moan. Have been so down this week, my tongue is agony, swollen, red and very lumpy and on top of that a girl at work who I thought was a friend did the dirty on me.

I'm feeling so sorry for myself that i'm angry this awful disease got me, someone who puts everyone else first, rather than attacking someone who does nothing for anyone else. I feel like going to bed and staying there, don't want to eat or drink either cos everything just hurts.

I don't want to be treated any differently but I just wish some people would give a thought to what I have been through and what I am still going through instead of treating me like anyone else and expect me to do the same as I did before I had this. My mind for work has gone, I seem to have lost some of the knowledge I had and I certainly cannot deal with the phones as well as I used to. Just don't know what way to turn at the moment.

Had to have a load of blood tests done at the doctors and they have come back confirming I'm aneamic and I now have a problem with my Thyroid. I had an appointment with my doctor for next Monday but they have now had to delay this for 2 weeks.

I'm sorry don't want to bring everyone down just because I am, but I just had to write something down to try and clear it off my chest. My husband say's cheer up it's the weekend, bless him, as good as he is he doesn't fully understand how I feel, but then how can I expect him too!

Speak again soon x

Good morning Sue ,thought I would log on this morning and catch up with the forum ,goodness me Sue what a terrible week you have had girlie.Firstly I would like to say you have done the right thing, here is where you can offload when things are down and as regards the girl at work ,well she is not worth persuing, what a B...ch just you watch out for her in future .People can be really selfish and cruel and I have seen this on a few occasions in shops mainly when Paul is trying to get on with his life and buy something simple ,but his voice is weakly audible and he looks a little poorly, but if you pay attention you can hear him ok but recently 2 days in a row he has had the misfortune to get some real class acts who start to shout at him saying they don't know what he is saying. I now step in and shout back at them using the same tone and then give them a watery smile, for about an hour afterwards My hubby is very quiet then has a wee irritable period and it makes me so cross that a percentage of the human race can be so stupid and unfeeling .

If your mouth is really playing up at moment you need to keep an eye on it as it may be prone to starting an infectionas your system will be run down and it won't help that you are anaemic at moment. This will pull you down mentally because physically your body will feel tired which is probably why your mouth is sore also.Plus your Thyroid is out of sync ,This will give a feeling of lethargy and can cause a bit of depression on top .This will also slow down your train of thought and reactions.The fact your doctors appointment has been delayed for 2 weeks is unacceptable in my book in light of how you are feeling and what you have been throgh already .Could I ask if this is your GP or your Cancer clinic ?

In the past and also at moment with my husband I juggle dealing with GP, Hospice pain control and also clinic .My phone calls are prioritized between who can deal with what problem earliest and most effectively .On one or two occasions now I have even built up the courage to phone our specialists secretary and explain I need my husband seen quickly and get a ponecall within a day and an appointment the same week so it does pay to shout up .Maybe your husband could do this for you just give hime the hospital number and tell him to ask to be put through to consultants secretary and tell him you need an immendiate appointment they will phone back Sue.Even dial the number for him then he will know exactly how agitated you are.In my opinion if GP is delaying appointment for another 2 weeks I would then contact your liason nurse at clinic and tell her everything and that you want to see your specialist also.I know the different blood tests can usually take a week and if they are keeping an eye on anaemia the repeat blood tests inbewteen can be more.Waiting for appointments which should not be taking so long and feeling low is not being of any help to you mentally or physically, try and get on phone on Monday and be seen earlier to get things resolved.I may not have got all this information correct regarding who is delaying the appointmants but just wanted to try and be of some help in the meantime as I understand how hellish times are when things become problematic and life is throwing more crap at you .Even just having a chat and other peoples view point can help get you through till things are sorted out just chatting about it gets it out of your head for a wee while.

Hope your posts next week tells us you have been seen promptly and symptoms are finaly being treated to get you back on track .

Thinking of you and sending positve vibes ,they will soon get this sorted out just try and find the courage to get on that phone and start needling for a quicker response from them .

Love Bell.x

This message has been edited. Last edited by: Bell,

Bell,

I think you're my hero.

Mimi

Hi Everyone,

Had another check up today and the consultant is really pleased with me. He has even confirmed that I should now start reducing the dosage of Amytrypline.

I had some queries on Chlorine from the swimming pool as I have just started swimming 3 or 4 times a week but he said that was fine.

I also had a problem the other week when I went for a massage at my local Health Club. I had a back massage somewhere else some time ago and they were happy to do it but when I went for one last sunday for the first time at my recently joined Health club they said that their insurance would not cover them to massage cancer patients who had not been out of cancer treatment for 3 years and I had to sign a disclaimer, and had it in any case. I checked with the consultant today and he said that it was fine to have them, even on the face.

However, everything is good at the moment, feeling really well and putting the old weight back on, hence me joining a health club.

Bell - Many thanks for your response to my last posting. I did manage to get in to see my doctor but everything was OK and still is. I do feel sometimes that I waste their time but you do tend to feel paranoid from time to time, especially when you get any different pain in different areas.

Love Sue x

Hi Sue good to read your post and that you are feeling so much better.I think the massage sounds a great idea .I was taught how to do Paul's lymphodoema massage on his head and neck which does help .My only concern would be that if you are having an Aromatherapy massage I would be careful about the oils being massaged into your face they can be quite potent and strong and my husbands facial skin and neck can still react to anything strong especially if he has a small nick or cold sore .Was just a thought, the normal massage oils would be safer on face.

Great to hear from you ,

Best wishes Bell .

Hi Bell,

Thanks for your thoughts and advice. I don't think I could have a massage on my face as yet because, when I touch the side of my face it sends a tingling sensation through to my tongue and I don't think I could cope with that for about 30 minutes. Think I will stick to the back massage's for the time being.

Best Wishes Sue x

Phew ! you did have me worried there Sue ,the back massages will be great could go one myself at moment .My hubby really enjoys this and this is one of his goals once we get him mobile again .So good to hear you are swimming and getting back into the swing again .

Best wishes ,

Bell x

Hi Bell,
I had 3 major ops just a year ago for cancer in the roof of my mouth, my gum and jaw and lymph nodes. This was followed by rt and chemo. I asked my consultant on my last check up about manual lymph drainage massage and he kind of dismissed it. Can you tell me who you asked about teaching you how to do the massage for your husband? Any info on this would be greatly appreciated.
Sue - i'm pleased to hear you're getting on ok. Everything you describe about the pain and swelling sounds so horribly familiar! I know none of us would ever wish this horrible thing on anyone else, but it does help to hear how other people are getting along.
Best wishes to all.
Dian x

Hi Dian ,Paul was being seen by the doctors at hospice to get his RT vomiting and few oither problems under control after initial treatment and at this time he had awful face and neck swelling sometimes he would look like deperate Dan .The hospice here has a rehabilitation unit with Physiotherapists and occupational therapists .He attended the physio department there once a week for lymph drainage massage and then they taught me how to do it .They use this technique for lots of cancer situations especially post surgery and also for breast and amputation .They also have different compression bandages etc that can be used with this but Paul's face was too tender .

We have found this very helpful and do it every day it takes me around 15 minutes in the morning. You could ask (insist) to be referred at your next clinic appointment or ask your GP to arrange it for you .

Let me know how you get on .

Bell.

Hi Dian,

I have been having MLD since the end of last year. After radiotherapy on my face and neck I started to look like Desparate Dan. So I found a cancer support centre, not to far away who have a nurse who specialises in MLD. I use to go once a week but now its once a month.

The centre is called the Cuisle Centre in Portlaoise, Ireland. All of the staff and patients are so kind and friendly.

I can highly recommend MLD and can tell you it works because all of my swelling has gone. Please search for the MLDUK site on the internet they can give you advise about MLD in the UK.

Best regards

Ken

This message has been edited. Last edited by: Dr Vinod K Joshi,

Thanks Bell and Kenny for the info. It's good to hear that the MLD actually works. I've got one normal side to my face but the other side looks like Mr Potato Head at the moment! I've got my next check up this coming Thursday, so I will definitely insist on being referred. I'll let you know how I get on.
Thanks again for your help.
Dian

Hi Dian
the hospice i volunteer in has a lymphoedema clinic and patients come as day patients and also we have three clinics within Doctors surgeries around North Yorkshire.The service is available to anyone(not just cancer sufferers)and you can be referred by your GP.I think most hospices have this service they are run by specialist lymph nurses.