This is great news that your Mum is doing so well, Shirley. Unfortunately the cancer road is rarely a smooth one and glitches and setbacks are pretty much part of the deal. Your Mum sounds like a real fighter and that in itself will help her through.
You sound upbeat too so compared to your earlier posts, you're doing really well. Good for you. A great idea to do some decorating for your Mum.
It is a long road ahead however with each step along the way you will probably find the anticpation the worst of it because when things are actually 'happening', you just get on and deal with it as best you can.
Well done to you all.
Onwards and upwards
Deborah

Hi Shirley

Sorry to hear about your Mum's setback. But it sounds as if she is being well cared for by everyone (not least by you, yourself).

Glad to hear her speech is improving. I was always afraid that I would have difficulty talking and/or that I would sound different and no longer like me, but, as John says, I have been very lucky with that. I am nearly two years past my op now and everything feels good.

Hope things are sorted for your Mum and she can be home and feeling comfortable soon.

Best wishes to you all

Love

Gwyn

Hi Shirley, gone through terible fear and anxiety with my daughter. Its not easy and the only release from it all is sleep. But then you wake in the morning and it starts again.The human condition makes us brave and gives us strength to carry on.This will happen to you. keep brave, keep your faith and God willing you and your mom will be fine.

Love, Dvid.

Hi everyone,

Thank you all for your kind replies. Gwyn you sound as if your operation was very similar to my mums, you have done so well. Are you able to eatnow?

My mum is so determined, we are all hoping she will be able to eat at some point even if it is soft food like she was eating before. She has cut a recipe from a magazine out for soup, she said she is going to make it when she comes home and she WILL eat it one day. I so admire her optimism and she will do it when she puts her mind to something.

She is looking so well, she had her new peg fitted again yesterday, third one now, was in discomfort yesterday, but is fine today. She is very happy, today, smiling because she is being discharged tomorrow to our local hospital for convalescence. She says she is only staying there TWO WEEKS then wants to go home.

It will be so much easier, I can walk to see her there. She is amazing and an inspiration to us all.

David, I understand where you are coming from, the worry and stress is unbelievable and I agree you do get an inner strength to carry on. There is still a long way to go, and we dont know yet if she needs further treatment, radiotherapy, which I know is very unpleasant and will hold her back, when she is on the up, but we will cross that bridge, if and when, we need to.

Thank you all for your replies.
Shirley

Hi everyone,

Just an update on my mums progress, I have been writing on other peoples topics. She has now been in out local community hospital for 2 weeks tomorrow (thurs), she is doing alright, bit fed up and few hiccups, had a high temperature last friday, was put on amoxycillin which has been causing diarhoea, that and a mixture of new change of food, she is now on jevity.

She hates the feeding pump machine, and is attached to it for most of the day which gets her down, and also misses eating and eating. She has not had any more speech therapy so dont know whether she will be able to pass the swallow test or not.

She hasnt been moving around, just sitting and I am concerned about when she eventually goes home how she will manage, especially with the stairs. Think she has lost her confidence a little, as she is well looked after in hospital and think she is panicking about going home, although obviously she wants to go home, but still feels very weak, which is understandable.

Shirley

hi everyone,
I look on the forum most days but havent posted for a while. My mum is still doing very well, still in hospital 8 weeks in all tomorrow, she has been ready for about 3 weeks now to go home but its all red tape getting everything in order for her to go home, arranging carers, district nurses etc.

She is very bored now and quite depressed because apart from her visitors mainly my dad and family she doesnt speak much to people. She will see more people when she goes home.

We went to the consultant yesterday (fri) about her prognosis. We had good news, she wont need radiotherapy thank goodness, he got all cancer out, and is very pleased with her progress. It had started going into one lymph gland, so thankfully he removed the glands.

She had a check up about whether she will be able to wear dentures, and the result being she can have top set but not able to have bottom set due to surgery she had on her jaw bone. Mum was very happy about this.

Just working on the swallowing and hopefully one day eating now, and speech therapy for her talking. So glad she is improving she is an inspiration and has been so brave.

Thanks for listening
Shirley

Hi Shirley, that's good news about your mum. Not having to have th RT is spot on, it sounds like she's well on the way. Hagg.

Good Morning Shirley Ann,
Perhaps you will not remember me, I posted a reply on day one, simultaneously with Hagg.
Firstly I am delighted to hear hear about your mum's progress. Good by any standard but for a seventy seven year old nothing less than brilliant.The fact that RT is not necessary is a big bonus.
If she can have a top denture she will soon master the important business of eating, although only soft food at first. If she has difficulty I may be able to help, I too am limited to a top denture and a non functional lower jaw and soon managed to cope with almost anything including fillet steak. Mind you I have to say that food was always a very important part of my existance, a couple of days after the operation a well meaning therapist came to see me and spent some time telling me that the disfigurement was not too bad and would improve with time (all very true), I told her that I was not at all concerned with disfigurement ,when will they remove the feeding tube from my nose and let me have some real food. After one week the tube blocked and I was told that they would remove it and fit a new one, I agreed to half of this, the removal, but no way was I going to let them fit a new one, they would have to bring some real food. This caused some consternation and eventually the senior consultant was asked for his opinion, he agreed with the note of caution that if I could not eat satisfactorily a tube would have to be fitted.The first meal was liquidised cottage pie,believe it or not. I seemed to have forgotten where my mouth was and promptly shovelled this "jollop" into my ear, over my shoulder and quite a lot down my shirt front. At the second attempt at a meal someone brought a mirror to show me what a mess I was making. I asked for the mirror to be left with me so that I could watch where I was aiming,and from that moment things improved. I needed the mirror for several weeks to perfect my aim. These are the sort of things which only a fellow patient can tell you so If mum has difficulty please get in touch.
Boredom probably does more damage than the initial complaint, she is a stalwart soul to manage eight weeks and remain sane.
Mum will be very dependant for several months, progress will seem very slow, please have patience.
Look in from time to time and let us know how you are all getting on.
Keep Smiling
John

Hi everyone,
Sorry havent posted on here for ages, I do look in and read nearly every day. Its a while now since I told you about mum.

After 8 weeks in hospital, mum was going mad with boredom and very depressed, we had to wait for carers to be put in place, which she wasnt keen on but bullied into or couldnt go home, she eventually went home 26th August. Carers were in place for 10am and 10pm to get her up and take her to bed, which straight away the times were all wrong, mum is an early riser and they expected her to stay upstairs until they came in the morning, needless to say this didnt work so the morning one was finished straight away, She was already up and dressed and downstairs well before 10am, she didnt need help with her personal care she had been doing that in hospital as soon as she was able to.

She hated the carers coming in, and got very upset and depressed, they were bossing her about and shouting at her, so the night one was cancelled after about 2 weeks. I went on holiday on the sunday after mum came home for 12 days to Zante. Mum was quite low when i went away but a big change in her when I came back, she settled in home very well after the first initial few days, she was quite low and depressed in the beginning but now she is a different woman.

Shes had lots of problems with the peg tube leaking and soreness on her skin, apparently she makes a lot of acid and with the tube leaking the ensure is burning her skin around the opening, in the last 2 weeks shes had 2 different tubes. She was taken in to hospital when i was away for a new tube, lost count of the number of tubes shes had since beginning June, 09.

Shes started eating bit of soup, jelly, ice cream, mousse not bad considering we were told she would never eat again. Shes waiting for a camera test down her throat now to check her swallow to see if she can eat anything lumpy.
She really misses taste of food, although only a plain eater she liked her dinners and ordinary food.

We go to see the consultant Mr Jones again 16th October, 09 see what he has to say then. I still worry about the cancer and although its good news she didnt need radiotherapy, initially he told us he does it as a matter of course, but now he says he has got it as a back up incase of anything happening in the future. I know there are no guarantees of cancer gone for good, but just hope he never has to use it in the future, but its always in the back of my mind, especially when I read of cases on this forum. Well thats all for now, I could go on for ages. Thanks for listening.

Shirley

Great news, Shirley and well done to your Mum.
All the best for ongoing improvements.
Cheers
Deborah

Hi Shirley

Yay! It's great to hear that your mom is on the mend and won't need radiation. When my family got that happy news for me, there wasn't a dry eye among us. I hope that your follow up on the 16th brings you nothing but continued good news.

Julia

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

Hi Julia and Deborah,

Thanks for your replies, yes Julia when we heard mum didnt need radiotherapy the relief we all felt and there wasnt a dry eye in our family either, my sister and I just looked at each other and broke down, mum was very composed, in all fairness she has been from the start of her diagnosis.

Been back in hospital all morning problems with the peg tube again, it fell out while she was sleeping, she was so upset, will be glad when she doesnt need it, so will mum. Shes got to go back tomorrow for a ct scan to check the tract, nurse thinks she may have an abcess. Hope everything will be ok as obviously she still is very dependent on tube for feeding and meds. Hope she doesnt need nasal tube as she didnt like that and I know she wont go out of the house with that. Julia how long did you have your nasal tube in?

Shirley

Hi Shirley

The NG tube wasn't so bad--and it had the advantage of not needing to be surgically installed. As I recall, mine was roughly flesh-colored, and most of it was internal. Honestly, I was more self-conscious about the bib that covered my trach than about the NG. I had the tube in for less than a month--three weeks at the most. It went away some time between when my arm and neck sutures were removed and getting rid of my trach.

Julia