Hi Nicola

I just thought i would drop you a line as I have been chatting to simon who appears to have gone through the same thing i am now facing

At present I have a secondary site in my lymph node on the right hand side of my neck ... they can not find a prime site I have had multiple cameras and tubes doen my throught had a ct scan and a PET CT scan and no primary site found ... I am now going into Addenbrookes on monday for multiple biopsies from the back of the toung throat and a scape of the tonsil area (although i had them out when i was 8) before they assess my treatment plan

At present i have been told that they seeno need to operate and think the lump can be dealt with ... via the 6 week of chemo and radio therapy ... so you appearto have had it a lot worse than myself

I know what i have and accept it and like where Simon was i just want to get on with it and reading your and Simons posts has given me a flavour of whats ahead ... i know its different for everyone

Im just trying to get a perspective on what i am now facing and how long im going to feek crap for as i have a business to run and am trying to put in steps to limit the impact of my absenses

regards

Gary

Hello everybody,

Sounds as if everyone is doing well especially Gary. Have you finished treatment now? How are you feeling? Sounds as if you have coped well, how was the cookie? There was no way I could have eaten a cookie at this stage with a frazzled tongue! As for being bunged up, Laxido was what I was prescribed, it seemed to help. Strangely I've still got them as well as some other meds, I feel weird about throwing them away but I'm not sure why I'm keeping them, kind of a safety net I suppose. Keep me updated with the Leeds meet up, I love Leeds. I will try and make it if I can. You sound as though you have escaped the phlegm issue, I still get a sticky mouth first thing in the morning but the phlegm problem settled down a few weeks after treatment.

Simon, I've noticed an improvement with food too. I eat three meals a day most days now which helps the fatigue. Pleased to hear you say you have days when you feel like you've never had cancer, I look forward to that. I'm still waiting for my peg to come out, I have a tongue check up next week and I'll be making my disappointment known, I just want it out now. The referral should have been done almost eight weeks ago so it's time to make a bit of fuss I think! I'll be glad to be rid of it however every time something comes to an end and its another step closer to being normal again I get a little wobbly. I suppose like you were saying, it's all been a safety net and when it was time to have my PICC line out or stop meds etc I felt a bit shaky. Sounds as if you are back into the swing of life which is great, I hope you get the help you need with the night sweats.

Irene, sweet potato chips are a great idea! I will try that. I find regular chips too dry too and I can't have ketchup as it stings but I did try chips and mayo but again was still too dry. I add caramel syrup to my coffee and a big spoonful of sugar, otherwise I can't taste the coffee alone. The worst times are in the evenings when I fancy picking at something nice to eat. I used to have chocolate or cakes/biscuits, now it's rice pudding with a dollop of jam but it all takes so much more effort! Sorry to hear about the episode of blood, perhaps something was a little harsh on your throat which made it bleed. I know my throat is still ever so raw and wounded. If feels as if someone with long nails has scratched down the inside of my throat and the same areas seem to sting most when I get brave and try something a little spicey. It was also very sore when I had a bit of a cold and cough recently.

Gary, I'm sorry to hear of the position you find yourself in because of cancer. None of the treatment is pleasant but it is manageable. It does get depressing at times especially if you are unable to eat but you just have to keep reminding yourself that it won't be like that forever, only three months ago I couldn't ever imagine eating normally again but I'm already tucking into meals. In terms of time off of work etc, I didn't work at all throughout my treatment but that was due to the major operation I had a couple of months before my treatment started and I was told to expect a minimum of four months of recovery time from the surgery alone. However I did meet another person having the same treatment as me and he managed to continue working through most of the six weeks, I believe his job was partly physical. I would suggest putting steps in place to ensure you don't have to work and if you can then its a bonus. You never know how you'll feel from one day to the next and it can be quite exhausting. I know I couldn't have thought about working when it was happening for me, I struggled for three to four days following the chemo each week but everyone is different. Also, try to remember that the recovery for a few weeks afterwards is when you will also need to rest. It all sounds like such a lot to think about in the beginning but as long as you have help and support, it's only a short time of your life that will be disrupted. You'll be back at work and back to normal before you know it! I hope all goes well on Monday, let us know how you get on and please feel free to ask any questions. I'll be thinking of you.

Speak again soon,

Nicola xx

Hi Nicola,

Just seen your latest few posts and like the others, I was sorry to see that you've got a few worries just before your long awaited (and much deserved) trip to Disneyland.

We all know how hard it is not to worry, but hopefully, the sight of your little girl's enjoyment and wonderment in the park, will be enough to push the worries to the back of your mind for a wee while.

I look forward to hearing all about your trip (I'm off for my op next Friday so will be offline for a while!) but I'll be logging in asap after I'm home!

Enjoy Paris and we'll chat soon,

Love and hugs to you, Jo xx

Jo, all the best with op, G

Ah thanks Gary.

A bit on an auspicious date, being Friday 13th, but fortunately, I'm not really superstitious . . . . so as long as there are no ladders to negotiate and no black cats ready to jump out in my path!

I read your posts on here and on the Branchial Cyst thread and it's good to read how well you're doing!

Hope you manage your get together in Leeds in due course!

Take care, Jo x

Jo, some cultures consider this date a good omen! IM with them here! G.

Jo,

I'm with Guzzle on this one - Friday 13th is definitely a lucky day.....

Simon XX

Good luck for Friday Jo.  Wishing you a speedy recovery.  Irene x

All, any followers of branchial cyst Access had some good news. Cheers, All, G

All , any tips for  deteriorating neck burn. Got one week review with Dr. Tomorrow and aquous cream just doesn't seem to be up to the job. Nice gentle spin on road bike today but factor 50 / neckbbuff on, regards, G

Hi Guzzle

When my neck skin began to break down (very close to the end of treatment as I recall) my specialist nurse gve me a supply of wonderful sterile dressings called Mepilex Lite which you just cut to size and they were very easy to apply.  She also showed me how to sluff off the dead skin by mixing up your aqueous cream with water and using it on a scrunched up swab like soap.  I always remember I was pleasantly surprised how quickly the skin healed up (in just a few days I think) with no signs left of the burnt area.  Hope all going well with you otherwise.  Best wishes, Irene.

Irene, thanks for prompt response. Nurse has mentioned dressings so Ill make suggestion tomorrow. Apart from that trying not to lose weight. Had a spin on bike today. Post treatment is frustrating but too early fir return to work! I hope to make Malta in August though. How are you?

Regards, Gary

Irene, thanks for prompt response. Nurse has mentioned dressings so Ill make suggestion tomorrow. Apart from that trying not to lose weight. Had a spin on bike today. Post treatment is frustrating but too early fir return to work! I hope to make Malta in August though. How are you?

Regards, Gary

Hi Gary,

Not too long to go now and you can relax back into normal life. Enjoy the bit before you have to return to work.

Malta is good. We went there some years ago and had a small villa in St Pauls Bay. I recall that Paradise bay

just round the corner was good for swimming. We found the people very friendly. I hope you enjoy it as much

as much as we did.

Colin

Colin, good to he from you. Finished treatment last week avoiding tube and just had early one week check. Lost a stone or so but off painkillers pretty much. Had cumbrian sausage mash and onion gravy today which nearly finished. Gravy helped. Still taking light excercise. One week out. Doctor supirts trip so holiday insurance next which she will give me a letter fir. Cant remember conclusion we came to regarding best company so if we could refresh that debate it would be great although I have a list. Looking forward to Malta. Staying in Qawra and just been looking online. Found a place to swim with dolphins in semi wild environment which guarantees the experience!

Regards, Gary

Nicola, hope you are well. There is a blog on word press by a lady called Stephanie Wigglesworth who had similair experience to you. She had an anomly on her tongue which sounds like tours which was innocent. Id recomend the radioactive man blog also  , regards. Gary

Hi all, lovely to read and catch up with everyone on here. I have a few good things to share....

Got back from Paris late Sunday evening, had a blast! Was worth every penny just to see my little girls face when she met the Disney characters and princesses! We didn't get to do all we had hoped, I was too tired and it's not a restful holiday at all, lots of walking and I'm not up to it yet, but I made sure I kept my energy levels up by snacking and drank LOTS of water (it was about 25 degrees everyday, combined with walking a lot - not good when you've had radiotherapy to the mouth!) we spent the whole time at Disney, so another trip is on order so I can do some shopping and see the Eiffel Tower!

Early yesterday morning I had a call from the hospital. They have booked me in tomorrow for my peg to come out. About bloomin time is all I can say! I opted for the sedation route, fingers crossed it goes well and no problems such as when the peg went in. Apparently the odds of a perforation to the stomach during an endoscopy is 1 in 3000. That 'one' was me when the peg went in! So I really hope all goes well tomorrow, I'm looking forward to being peg free but I have put a few of the NHS milkshakes down my tube yesterday and today whilst I still can in an attempt to gain a few calories!

Also, two days before I went away I called my specialist head and neck nurse and asked her if it was possible to see my consultant or surgeon before I went on holiday about the ulcer on my tongue as the worry was all too much. Luckily I got an appointment for the following day with my surgeon, one of the people I trust the most. He took a look at my ulcer and decided a biopsy isn't necessary in his opinion. He said a biopsy would do more harm as my tongue wouldn't heal very well now. He thinks it's an ulcer which isn't healing very well due to what my mouth has been through, he said mouth sores won't heal in the usual way post radiotherapy to the mouth, but he will keep an eye on it. He also offered to see me more regularly at his clinic rather than me having the usual monthly check ups at the dental clinic as he could see I was very stressed! He said they are there to cure ''me" rather than just cure my tongue. So no biopsy tomorrow and I was able to enjoy my holiday without worrying!

Gary, glad to hear you are doing so well. Thanks for the reading suggestion, I will take a look at those. Also, Insurewith is a travel insurance company that someone on here suggested a little while ago. Apparently their quotes were very good according to Hannahman.

I hope all went well for Jo on Friday, I'll be looking out for an update for her.

Simon, I can't believe it's almost been a year for you since all this began, I read all of your very good advice to Gary (Vatch) on his thread, I will also respond to him. Hope all is going well for you, it must be your long awaited appointment next week?

Gill, I hope all is going well for you at work,it must be tiring, I must admit, I'm not much looking forward to struggling with the tiredness when I return.

Thanks all (Debbie too) for supporting me through my period of worry!

Speak soon everyone,

Nicola xx

Nicola, lovely to hear from you and delighted you both had a good time. Paris sounded lovely. Haven't been for a while so may take my boys over Oct half term. I believe apartments are reasonable for groups. Im trying to get back to fitness but as you know its tough. I do find a little excercise and fresh air makes you feel good. Have managed to slowly run a few miles and cycle 15. Am going to attempt Liverpool to Chester charity ride Sunday which is 50 miles but if its too much Ill just stop half way and train it back. You are tougher than me though - you have managed wine and I cant even get a beer down yet! Good luck with peg and keep us posted. If I manage the ride Ill put a photo on FB if anybody is interested.

Regards, Gary

Hi Nicola

So good to hear you (or your daughter) enjoyed Disneyland so much.  We took our daughter wen she was three over to Florida and yes it is all walking but at least they sleep well at night.

Good news on the ulcer as well and that your Consultant will see you in his clinic on a regular basis rather than when you go the dental clinic.  Must be a huge relief to you.

Will keep everything crossed that the peg comes out easily tomorrow.

Work has been fine.  Did three mornings first and second weeks, am doing five mornings this week and doing a couple of full days next week.  Hoping that by early July I will be back to full time (well apart from the various scans and appointments). 

Virtual hugs on their way.

Gill

Hi Nicola,

I read your update on my way into work today and it really cheered me up. I am so chuffed that you managed to get some reassurance before your trip, and then that the trip went so well. As mentioned before, your ulcer issue sounds almost identical to the problems that I had - the fact that they do not go away in the timescales mentioned on the NHS site sets all sorts of alarm bells ringing. It is good that you have a good consultant who took the time to explain things thoroughly to you. It also helps that you were fairly assertive around this - sometimes it pays to exert a bit of control and pressure.

I hope that the PEG removal goes smoothly - it'll be over in a flash and you'll lose your dangling friend!

Well done and good luck.

Simon xx

Hi Nicola

I'm so pleased that you had a fab time in eurodisney. I took my son when he was one and we had a great time although it was in December and freezing! We loved it though.

My peg removal was a breeze and it's amazing how quickly the hole closes up - hours rather than days! I really hope yours goes as smoothly. I did find it weird once it was out and I kept forgetting it had gone.

Debbie

Hi Nichola

I'm thrilled to bits that you've really enjoyed your holiday and that everything fell into place beforehand so you didn't have to go away worrying about that ulcer - what a relief it must have been.  I felt the same as Simon, it really cheered me up.   Also delighted to hear your long-awaited PEG removal was happening today.  Hope all went smoothly and you enjoy being rid of it dangling around.

I'm doing away fine but for the last 2-3 weeks have had a cold with persistent cough and taste buds have taken a massive step backwards.  Have also had an over-sensitive mouth, so I've really not been enjoying eating again for a while.  Went to GP last week and had to give a sputum sample which revealed there was some bacteria and also turns out I have thrush again.  Did others get bouts of thrush throughout their treatment?  I had frequent conflicts between hospital and GP as to whether I had it or not.  There has been no visible sign lately (like white furry tongue) but I'm now wondering if this and the mucus infection have combined to make eating such a hassle again.  So tonight I am delighted to have a course of anti-biotics and thrush treatment and am hoping that once these work their magic I will get back to where I was 3 weeks ago - begining to enjoy some of my meals again and certainly managing to get bigger portions down.

Best wishes to all my friends on this thread - great to see everyone supporting the two Gary's now.  Guzzle - well done on reaching the end of your treatment, sounds like you are eating really well and managing to keep pretty active.  Vatch - how's it going with you, any news on your treatment plan?

Jo - how have you been since your op?

Love, Irene x

Hi Irene,

I too suffered from the dreaded oral thrush. The symptoms were a very heavy furry coating on my tongue. Antibiotics turned out to be a waste of time for me but a medication called Ny***** (can't remember the precise name) did the trick. My tongue is now totally clear and bright pink - it does get sore very easily and I'm very sensitive to hot drinks or food. Like most people in our position I can't deal with anything containing black pepper or any degree of spice. I hope that you get the thrush sorted soon because I know that it can be a real nuisance.

Good luck.    Simon xx