I have only just discovered this great site and hope you will be kind enough to read my series of setbacks because I do not seem to be getting much sympathy from the health professionals. I was diagnosed with cancer to the base of my tongue in April. I am a 62 year old non-smoker. I started 35 RT's and 7 chemos in June. I was told that I would have a feeding rig put in shortly before or shortly after treatment started. However due to a hospital oversight my June appointment to have the rig fitted 'got lost'. By week 4 of treatment I was unable to swallow and therefore could not take in sufficient nutrition to keep myself going. I went to A & E and was admitted for what turned out to be a 3 week stay. I was so de-hydrated that the last 3 chemo sessions were cancelled, however RT continued until just over 2 weeks ago. The rig was fitted during this stay along with a little surprise called MRSA, although this was not discovered until after my discharge. I was sent home on 2 syringe drivers and delivered into the care of the community nurses and promised 24 hour care. The only time I needed emergency out of hours care was when I was down to just 1 driver and it broke at about 11pm one night. I was told that nobody was available to come out and see me owing to staff shortages! Somebody finally came the next morning. Whilst taking the driver line out I developed a huge and very painful abcess on my upper arm about 10 days ago. This has still not been treated. I have to phone the hospital every morning to see if they have a space for me to go in and have it drained. Through all these setbacks I have seen no sight of my consultant. In fact I have only met him once at the assessment meeting in May. 2 weeks plus after treatment finished I have the dreaded mucous problem that has left me so tired I am starting to worry for my sanity. I am coping well with the feeding rig managing about 8 Fortisips a day. I live alone and have no partner or family to support me, so I am finding these additional problems difficult to cope with. Well there it is. I feel better just having written all that down. It might sound like a whinge and it probably is! Good luck to you all on your own personal journeys. Love and regards.

Hello James,
Glad you found us for a bit of moral support!
Where in Sussex do you live? Where were you being treated?
It seems all of our experiences are speckled with set backs and frustrations and i think it's less common for people to go through this awful treatment completely unscathed!
It always seems like one hurdle after another & so often we find ourselves screaming 'GIVE ME A BREAK!'
You're amongst friends here. Coping on your own must be the hardest thing and for facing all that you have so far makes you incredibly brave.
Have you requested to see your consultant? I know mine remained elusive, i saw her 3 tiomes in the 6 months through treatment. & once since i finnished. So just 4 times in over a year. But i saw other oncologists in this time. Have you seen other members of the oncology team?
Feel free to let off steam, we're all here to help or even just listen. & even though itmay not seem like it now - there IS light at the end of the tunnel!

All the best to you,
Michelle

Hi Chelle
Thanks for your reply. I live in Brighton and was treated at the Sussex Cancer Centre at the Sussex County Hosptal. My consultants name is Simcock. I keep being told he's one of the top men in the field and maybe he is. When I was admitted to hospital I went straight onto a General Ward where the staff were great but kept telling me I should be on a Oncology Ward. They said it was disgraceful that so many cancer patients were on the wrong wards simply because of lack of space. After a few days I kicked off at the vising oncologist and within 2 hours had been moved to a private room with an en suite bathroom and a sea view! This only lasted for a few days and I was moved to the famous Howard One Ward where I saw members of my team on a daily basis but Dr. Simcock remained stubbornly elusive. I have my follow up appointment in just over 4 weeks so maybe we will meet again! During this saga I have seen several lights at the end of several tunnels only to have them remain elusive, and each time because of NHS incompetence rather that my body letting me down. The local Macmillan nurses have proved the exception throughout and I will be turning to them mch more from now on. On the positive side I am relatively pain free, just taking the odd dose of Oxynorm through the rig and off anti nausea drugs altogether. As I said my greatest bugbear is the never ending mucous. It really is a filthy after effect that invades so many areas of your life. I have read all the posts on this subject and thank everybody who took the time to write in. They have been a great comfort although what we need of course is a breakthrough medication. Just think of what a difference such a product would make to the lives of so many. One of my Macmillan nurses was instrumental in getting me prescribed something called Mucogel to be taken with Xylocaine. It sounds absolutely ideal and is sitting in front of me as I write. Unfortunately the poor girl had forgotten that I can't swallow and this needs to be taken orally. Has anyone had any experience of taking this stuff? I can't find any reference to it's use on the internet. Once again it's been good to make contact. I hope you all manage a good nights rest. Love James.

James,
I also had my treatment in Brighton. So i expect our paths would have crossed at some point! My consultant is Dr. Jo Simpson. But i saw Dr.Simcock on my last visit as they are part of the same team. I think it 's standard that you don't always see you initial consultant. But i think they should do something about that as consistancy is important for your peace of mind, not to mention the fact there's all kinds of chaos going on around you!
I had my chemo on Howard One ward! I suffered the worst anticipation sickness and the thought of going back there makes me feel nausious! But some day i want to pop in to show everyone how well i'm doing now.
Was Pat Shields your MacMillan Radiographer? I'm sure if you expressed your concerns to her she'd get it done. She moved mountains for me - but i had to speak up! If you don't ask you don't get! There was a period after i'd finnished Radiotherapy when i went really down hill. I dropped to 6stone 10lb and was severely dehydrated. At the time i was staying with my dad to conveless in Eastbourne & she arranged it for me to be admitted there and everything.I think if you express your concerns to her she'll sort it to the best of her abilities!

I've also had issue with the admin side of treatment.
My follow-up appointments were forgotten about and i've had to make both appointments post treatment myself!
Would the Mucogel dissolve in a little warm water so you could administer it through your RIG?
I tryed crushing magnesium tablets and feeding them through my RIG & just ended up blocking it (manage to unblock it again with cola & water with bi-carb)!
Lets hope things get moving for you soon!
I'm afraid we need to stamp our feet a little so we don't get forgotten!

Take care,
Michelle

Hi Chelle
Pat Shelds is still the MacMillan Radiographer and I wasn.t impresseed. The first 2 weeks of my treatment she was on holiday, I spent the next 2 weeks complaining about how sore my throat was and how much difficulty I was having swallowing food and liquid and asking when the feeding rig was going in. No answers. I next saw her when I had been admitted and was having RT. She twice told me she would come and see me on the ward but I never saw her again. Out of interest Chelle at what stage of treatment was your rig fitted? Well I've just had probably the worst night since treatment finished. This mucous has a life of it's own and yesterday it changed from being something you could bring up and forget about for a while to a permanent claggy, stringy coating of the mouth and throat. I've looked though the posts on the subject and I find it hard to beleive that there is nothing that will help. No solution or mouthwash that will give a short respite. Can nobody help? Take care, James.

That's a shame James,
I found her a great help!
My RIG wasn't put in until my 6th chemo cycle. About 2 days before i started R/T. It was a nightmare op! Everytime they filled my stomach with air i threw up on the table! It took the surgeon 3 attempts & in the end he gave up and someone else took over. It took them 2&half hours! & obviously i was awake to see the surgeons shanking hands and hear him say ' i don't think we should continue' Nightmare!
The tenacious mucous does ease up eventualy. I think i read on here that Mucodyne syrup is good. I think it's perscrition only.
It does get better. I have virtualy no saliva left now. But every day i get a big lump of rainbow gunge in the back of my throat and there's only one way out!
Sorry!
Hope today's a better day!
Micheelle

Hello James

Try the following suggestions:
(1) Rinse with a warm, dilute solution of sodium bicarbonate (baking soda) or salt & bicarbonate every two hours to bathe the tissues and control oral acidity. Two teaspoons of bicarbonate (or one teaspoon of table salt plus one teaspoon of bicarbonate) per quart solution is recommended. Use the 'salt+bicarb' mouthwash often as it is soothing, counters the dryness and removes thick saliva.
(2) Use the Mucodyne when the saliva gets stringy; it helps thin it.
Mucodyne is currently being used for other purposes: glue ear, respiratory tract disorders (disorders of the breathing passages) characterised by excessive or viscous mucus, including chronic obstructive airways disease, etc. You can get it in capsule forms Capsule Form and Syrup Form. The Mucodyne Syrup is a clear, amber syrupy liquid smelling of rum and slightly of cinnamon. I suggest you ask your doctors about it, try it out. Do let us know if it helps you.

Also,do look through the past discussion about stringy saliva to see if there are more helpful suggestions.

As Chelle says, "it does get better."

Best wishes
Vinod

James
Sorry to hear about all your troubles.
I never had "gunge" problems as badly as you seem to but I was using the bicarb mouth wash from the first sign of trouble. I reckon that helped a lot. Also very frequent cleaning of teeth kept things fresh and seemed to promote some normal saliva.
As Chelle said, it will improve.

Chelle
How long since you had your rig out? I was wondering when my scar will begin to fade away - although my boys are quite impressed that Dad has 2 tummy buttons!

I had my rig out at my first follow-up sooo that would have been end of feb. I still have my extra belly button!
My cousine who's 13 suggtested i should also have that one pierced too!
My scar looks kind of like... hmm... i guess a cats bottom! with 2 faint little scars from the first 2 attempts *lol.
Beginning of the week i had a pain in my right hand side that the g.p. suspected appedicitis - turned out to just be a urinary infection - i told em i WAS NOT GOIN TO HAVE APPENDICITIS CUZ I DON'T NEED A THIRD BELLY BUTTON!

Thanks guys.
Can Mucodyne be used through a rig?
I have been very careful about oral hygiene since the start using virtually all of the Biotene products. Phoned the hospital again this morning to see if I could have my abcess drained. No room. Because I have MRSA it has to be done in sterile suroundings, meaning theatre time. So try again tomorow. The community nurse has just called. She was shocked by my appearance and tried to get me into the Martletts Hospice for symptom control. Again no beds. So now I'm waiting for a GP to come out and prescribe some stuff suggested by Marletts. If I continue going down they will have to find somewhere for me to go tomorrow at the latest. Thanks for all your support.

Hi James
The Salt and bicarb worked the best for me also

Difflam oral rinse just rinse and spit out
hope it improves quickly for you


Regards
Dave and Sue

Hi Jamsheer
(and Michelle,Dave& Sue, 200 minutes)
I went through your story a couple of times over trying to understand the manner of treatment they give in the UK and as I read more about it, I thank the Lord that I was treated in India!! Not seeing your consultant for ages is enough to get anyone depressed. Whats fantastic is the way you have been able to recount every bit of all that has passed and there is one thing for sure - you are in the right place.
Will anyone tell me what a rig is ? Jamsheer- you talked about xylocaine - do you use it? In case you do not - do try it - a spray before each meal.
I guess I will understand things better as time passes along. So Jamsheer you will to put up with me as the rest have done till I have things more clear. As Michelle will tell you I am a little slow in picking up things!!
Lol,
Ananth

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

Hi again
Ananth I am lying here listening to the Test Match and it's helping keep me going. A rig is the same as a Peg feeding tube, just attached in a different way. I have some liquid xylocaine which I was supposed to mix with Mucogel and swallow. Still no sign of a GP coming out, treatment is even worse in the UK on weekends!

Hi James (et al)
What a nightmare you are going through, James! I don't know what to say to you and feel sure that we don't have such poor care down here ~ everyone is very accessible. Try to keep your spirits up and know that everyone on this site has 'been there, done that' to a greater or lesser degree and their advice and support is priceless.
Cheers
Deborah
Hello everyone else
Just touching base to let you all know that Trevor is beginning to feel the effects of his treatment. He is needing to take rests, throat getting very sore. No taste to speak of, likewise with saliva but has had no nausea and doesn't yet feel the need for pain relief.
Here's hoping he can be an exception to all the rules.
Love from Down Under
Deborah

Just sitting here with my M&S cauliflower & Broccli Cheese, added extra milk to get it down easier, except- M&S forget the bleedin' cauliflower!

I think the medical profession just shuts down for the weekend you know?! (Except our good Dr here - he has to leave the country for any kind of break!)

Hey Ananth... How YOU doin'

Deborah,
good news on the pain meds. I put off the heavy duty stuff for as long as i felt i could. At least it's there if you REALLY need it then. My regards to our Trev! Has he got any funky wig colours yet?

James,
I'm getting frustrated for you now!
Mucodyne can go in the RIG if you dilute it & flush it after.
Keep us posted. I hope they get things moving for you soon.

Laters guys!
Michelle