Hi all, I had a check up this week with my dietician and head and neck nurse and the good news is I've put on 1.5lbs since last month and I no longer need any Fortisip drinks! Wahoooo! I thought I would be on those damn drinks forever so I'm really pleased about that. I do however have to try a new calorie supplement called Calogen. It's 30mls three times each day and as I'm still waiting for my appointment to have my peg removed, I'm going to use it for the Calogen as they are pretty grim. They are purely a calorie booster so not a substitute for food as the Fortisips were but I tried them once before and they didn't agree with me. I'll give them another go and see how I get on.

Irene, I hope yesterday went well and I look forward to hearing from you about how it went. Many happy returns for today, I hope you I have a lovely day with your sisters, god knows you so deserve it! I bet it feels strange with no peg anymore but in a good way. I'm still waiting for my appointment, it's taken over a month so far! I've reminded my head and neck nurse this week so hopefully I'll hear something soon. Apparently I have the new brand of peg which is the suitable type to be 'yanked' out too! I really hope this isn't the case as I think I would prefer the sedative route. Apparently I don't get a say in which way they go about it, they will tell me on the day! Eek! Let us know how you're going, you're very brave for opting to have it removed that way.

Simon, pleased to hear that all is well. I too was warned that the gums/jaw cannot always heal themselves well after radiotherapy to the mouth which is why I was advised to have all eight teeth removed before my treatment started. That way if I do encounter problems in the future, there will be no teeth extraction wounds to deal with. How are the night sweats? Have they eased off anymore? Will you still be having hormone tests? Are you eating pretty normally now? I'm struggling to find a lot I enjoy at the moment although there are some meals I know I can eat well and get some enjoyment from.  I did manage to get some spaghetti (from a spaghetti bolognaise) stuck in my throat this week due to the dryness, that was a bit scary! I managed to enjoy a couple of glasses of wine last night with a meal out with friends, but I started to feel a bit sick. My stomach just isn't used to it anymore!

Gary, you're half way there!! It really will fly by now. How are you for pain and discomfort? I understand what Colin was saying, I didn't experience any real pain either until right at the end and it was more of a case of my mouth feeling so disgusting rather than painful as to why I needed my peg. I also found I was too exhausted to eat with no appetite so the peg was very handy (as much as I hated it back then!) are you managing to eat and drink ok? Any pain relief yet?

Debbie, I forgot to mention in my last post but I wasn't warned off of alcohol either. I have attempted a few glasses of wine recently but I find my mouth can't handle too much as it gets sore. I'm also having to add lemonade to rosé wine to sweeten it, it seems I've lost my sweeter taste buds. How are things with you? I recall you needing more surgery this year, is that still going ahead? Do you ever look back to this time twelve months ago and think "wow!" It must feel like you've come so far.

The kids party was ok by the way but I did need a couple of days to get over it!! Damn this fatigue!! Euro Disney is another month away so I have time to build myself up a little more, I'll be nearly six months post treatment by then so hopefully I'll see an improvement.

Enjoy your weekend everyone,

Nicola xx

Hi Nicola, pleased to see that you are resuming your relationship with wine! Im sure that you will get comfortable with each other again now that you are reaquainted Im still having a bit of a jog , bike ride etc. But throat started to feel sore mainly on side being zapped. Still eating well and not on painkillers yet but have co codemol on hand. In overnight Monday for second of 3 chemo blasts. Will be halfway Tue.Also been given benzyadime? Mouthwash and gelclair which apparently puts a coating over any sore areas in moth. Dr gave me these in case pain hits over the weekend. Anybody used these? Pleased you managed kideggadon party and excited for you for Paris trip. Hope you get the chance to become bimble into Paris. Keep trying with the vino?

Regards, Gary.

Hi Nicola,

I am so pleased that things are still slowly moving in the right direction for you. You are pretty much how I was a few weeks back. It is slow going and sometimes you don't notice any change for a couple of weeks, and then you realise that you are slightly better than you were a month ago.

I still get the night-sweats one or twice a week. I'm due to see the hormone consultant on 27th June. Seems a long way into the future but maybe he's a busy guy (or maybe they hope I'll be better by then!). My jaw still aches from the osteradiocrosis but I hoping that fades with time too. I'll be glad to see the back of all this. I have the regular monthly tube-up-the-nose check-up on Thursday - if I don't go to the hospital at least once a week I get withdrawal symptoms!

I'm glad that your daughters party went well. It was a good test for you - judging by how I was I think that your fatigue should really start to reduce noticeably over the next few weeks.

Good luck Nicola - think how good you're going to feel when summer gets here.

Simon XX

Hi Colin,

Maybe she's out partying and enjoying her newfound freedom........

Simon

Haha not quite Simon!  Just been very busy at work and a bit tired in the evenings so haven't been online so often.  Have been doing a bit more physical work this past week than my usual sitting at a desk all day.  I did enjoy my birthday though and ate probably the biggest meal I have since treatment.  It was a humungous bowl of lasagne with salad and chips.  It felt like I was eating forever and not making a huge impression but I ate two-thirds of the lasagne, all the salad but only managed one chip!  I enjoyed it a little, but not as much as I would have liked!

The PEG removal really was a breeze.  It took my breath away for a second or two but it literally was only that, over in no time.  The nurse congratulated me on not letting out a yell (apparently most people make some sort of exclamation!).  My main concern beforehand was 'what if it gets stuck'?  She literally gave it a wiggle about to make sure it was moving freely, cleaned around the area, cut the tube (letting some air in frees it up even more) then said OK on the count of 3 - 1, 2, 3 and that's it out!  It oozed a little for a couple of days but that was all, no after pain or side-effects so very glad I agreed to have it done that way.  I was in and out of the appointment in about 10 minutes!  So Nicola it really is worth having it done the quick way.  It's quite a sharp pain but over in a flash.

I have been feeling a bit hacked off about the continued lack of food enjoyment, but I am making good progress at eating bigger quantities - just shovelling it down with lots of milk.  Also I seem to have worse than ever glut in my throat which is so difficult to clear in the mornings and sometimes makes me retch.  As I had post-nasal-drip (PND) before I got cancer (they assure me there was no connection) which also meant excess mucus in my throat, and have also had a cold, I'm not sure which of the three is the culprit or possibly a combination.  I must ask at my next check-up re the PND thing since there are ENT specialists on my care team as well as oncologists.  I met someone through work recently who also had throat cancer 12 years ago.  He is fighting fit, which is great news, but he admitted he still doesn't enjoy his food the way he used to.  That sounded pretty depressing, but then I reminded myself that everyone is different and that may not necessarily be the case for me.  It prompted me to read back through the diary I kept during my treatment and through February and March, which was well worth doing as it made me realise just how much things have improved since then and hopefully will continue to do so.

Nicola I share your experience with wine - I must try the lemonade tip and see if it taste a bit nicer!

Colin and everybody else - thank you all for your messages of good luck and congratulations and wishing everyone continuing good recoveries.  Guzzle you will be in recovery soon too!

Love Irene

Hi Irene

Congratulations on your continued improvement! I'm sure your taste buds will gradually improve - I know mine did. I have found that my throat is very dry though - you get rid of the mucus and then you get a dry mouth! Still it's a small price to pay.

Glad the peg removal was quick and painless. I couldn't have mine pulled out - I had to be put out. Apparently it depends how it was inserted in the first place.

Keep positive - it really does get better all the time.

Xx

Hi everyone,

I'm still plodding along slowly with recovery and battling this fatigue but thought I would say hello. I started having three meals a day last week for the first time since I don't know when! I've noticed a bit of an improvement with the fatigue, probably to do with the extra food and I'm trying to get into a better sleeping routine again ie - getting back to normal! I haven't slept well since having the biopsy etc last year. I find I now sleep for longer during the night (when I can sleep) compared to before the cancer treatment which I recall Simon mentioning the same for him too. I've had an awful cold, cough and sore throat for two weeks now and I'm struggling to shift it. I'm thinking could all be to do with low immunity, fatigue, lack of food and energy, did anyone else suffer like this with small ailments following treatment?

Irene I am so pleased the peg removal went well, it doesn't sound so bad after all. It's good to know you didn't suffer very much afterwards either. I'm still waiting for my appointment, it's getting a bit silly now, I've been waiting for six weeks now. I hope it's soon as it's a big step towards normality too. Sounds like you enjoyed your birthday but please try not to get too down about food, it's still getting gradually better for me too. A month ago I would never of attempted, bacon, egg, sausage and tinned tomatoes for breakfast but I have managed to eat it three times in the past week! I'll admit that I didn't fully enjoy it like I used to but I enjoyed it enough to have it again. I also managed to cook it too which was a big thing for me as I'm really struggling with fatigue. I was exhausted afterwards, thank heavens for dishwashers! You made me laugh when you said you are shovelling food down, it does feel that way sometimes!

Simon, I agree with the withdrawal symptoms if I don't visit the hospital for a while too! I find myself scanning my diary as I feel like I must have forgotten some appointment or other! Glad to hear the night sweats are a little less for you, that does sound like a long time for you to wait for an appointment, lets hope it's because he's a popular and successful doctor! I compare myself on a month by month basis now too, that way I feel I'm moving forward, otherwise it gets depressing when I think about how far I still have to go. That's good advice.

Gary, hoping all is well with you, if you're anything like me it may begin to become a little hard now, energy wise. I hope you are ok and managing to eat. Are you finding it painful now? I was given Gel Clair too but never used it. I used Diflam mouthwash which was good, but the coating only lasted for about an hour. I am indeed hoping to get a day in Paris when I go to euro disney next month, quite fancy a spot of shopping and trying out some of the cafes. It will be a break from Mickey Mouse anyhow!

Good to hear from everyone else too, I hope you've all been enjoying this good weather, it's certainly lifted my spirits for the first time in a while.

Speak soon,

Nicola xx

Irene/Nicola, Loving these foody tales so well done. You are giving me the munchies! Just had plate of carbonara with tons if parmesan . Getting a sore throat but managing to eat. Irene delighted for you. Nicola hope you get over your bug. But you are both on the mend. Im week five. Had second chemo last week. Still getting light excercise. Nicola if you can force yourself to di some it could aid sleep? I know its tough. Also Ive been trying not to nap during day and having early nights. Seem to have a bit of energy in morning so tend to do a little jog/ride then. Nothing too much.Managing with soluable co codemol / aspirin swish but have Ora morph on hand. May be TMI but any tips on plumbing being bunged up would be appreciated! Not complacent but been lucky with aide effects so far. I know I will prob be hit son but your recovery and that of others here gives me hope. So thanks to all of you. Nicola enjoy Paris and buy yourself something fantastic! You deserve it. You have inspired me to have a full English tomorrow! And in honour of Irene will make a Lasagne for dinner. Shame cant have a glass of wine with it because of pain meds! Hows your social drinking going by the way?

All the best, G

Simon hows your jaw mate?

Hi to everyone.......

I hope that everyone is set up for the bank holiday weekend.

I'm glad to hear that Irene's PEG removal went okay - we were all getting a bit concerned. Next up will be Nicola's tube removal and I bet she's really looking forward to seeing the back of it. Nicola, I remember I was strangely reluctant to let it go and I felt like I was losing some sort of safety net, but once it was gone I felt a sense of having a new-found freedom. Weird really.

Guzzle, I've still got a second bit of bone slowly growing in my month. It's not too painful at the moment and I'll leave it until my next check-up and see what they think.

I'm still having the nightsweats 4 or 5 times a week. It's really getting tedious now. I hope that the hormone doctor can sort it out on 21st.

My fatigue is still decreasing and some days I almost feel normal, like I've never had cancer. My mouth, although still drier than it once was, is everso slightly more moist. I hope it's a good sign of things to come. I still can't do dry food like bread or chicken, or anything spicy, but I do think that there is some progress - albeit very slow. Nicola, hopefully you'll find the same as you are very close behind me in terms of timescale.

Best wishes to you all.

Simon xx