Helllo Nicola

         well i just thought that i should post here with a little story of hope for you,I too was diagonosed with Tongue cancer FIVE years ago i also had a secondary cancer,on my neck,well to cut a good story short i have been clear of the tongue cancer since the radio therapy the only bad part is that the neck cancer has returned,but i do not know of anyone else at the moment to whom it has happened ,so your prognosis for your Tongue should be fairly good even though all cancers are different.

              Yours Hopefully grandadbob14  aka (James)

Hi all,

Just a quick post to let you all know that I'm still getting through it! Week three of Radiotherapy is now done and another three weeks to go so half way there now. Only two more chemo sessions though. The chemo made me feel very sick this week and have an upset tummy for a few days, it was as if I could actually feel it working and doing something in my body this week, not a nice feeling at all so I may ask for some stronger anti sickness meds this week. I really dread the chemo, I just don't like having it.

I've lost a little hair at the back of my neck, nothing major, just looks as though it's receding a bit! My mouth is still a bit sore but I'm managing to eat pretty well, although a bit limited. My taste buds have gone completely now so eating is quite depressing and the dryness in my mouth is horrible and I have a funny taste so I look forward to that improving when all of this is over. I've lost more weight this week and my PEG is a little sore and leaks a bit so I'm still hating that thing! I met with my Oncologist this week and he says I'm doing really well.

I'm still trying to stay positive but it's difficult sometimes. I have moments when I wonder how I will cope when the pain and side effects get worse but I just try and calm myself and tell myself I will cross that bridge when I get there.

Thinking if you all and thanks for your replies and for thinking of me.

Nicola x

Well done, Nicola,

You are just as I was at the half way point. I too had sickness with the Cisplatin - I missed the last two sessions because of it. I wish I'd taken more anti-sickness meds.

Everything you say reminds me of how I was and I can say that there is a light at the end of the tunnel - things will get better. Three weeks to go and it'll be 'job done'.

Well done and keep your chin up.

Simon XX

Hi Nicola,

You are doing absolutely brilliantly Nicola. You've got the right approach to this and I admire you greatly for it.

I am so glad you are over half way there. keep going hun.

Best wishes

Annabel. xx

Hi all,

It's been a difficult week. Side effects have really stepped up and I'm struggling now. It's mainly mental rather than physical, the thought of not being able to eat and taste food is really getting me down, I've been having to solely use my PEG tube since Wednesday of this week. My energy levels are low and this weeks Chemo has really made me feel ill, I'm even tempted not to have chemo next week. I have two more weeks of radiotherapy to go and it can't go fast enough.

Simon - how are things with you? how are you finding tasting and eating?

I've got so much support behind me but the thought of going through chemo again this week and feeling so awful afterwards is very daunting. I have this awful taste after chemo, even though my taste buds have pretty much vanished, also a horrible chesty cough. I hate what it's doing to me even though it's doing good at the same time. I just wish I could roll on 12 months and this all be a distant memory.

Nicola

Hi Nicola

I know it's hard but stick with it. I was so sick with the chemo and travelling for radiotherapy every day for seven weeks was hard. I can remember there were a couple of days when I felt I couldn't keep doing it. The guys on here kept me going because they've been through it and knew exactly how I felt.

You will get used to the peg. It freaked me out early on but I got used to not eating.  I was also so tired I stayed in bed some weeks.

You don't need to wish for 12 months to pass - it won't take that long. When does your treatment end? I won't lie and say I felt well straight after as it took a few weeks to start feeling more like my old self. When you start getting near the end of the treatment, it starts to pass quicker (a bit like the second week of a holiday!).

You've got to carry on with the chemo, Nicola - it makes you feel bad but it is doing you good. On the plus side, I had lovely soft feet after - even my kids commented! Every cloud and all that !!

Keep smiling, mate, you're getting nearer to the end of this battle which you will win!

Love

Debbie

X

Hi Nicola,

Sorry to read that this week's been a struggle and the chemo is making you feel so poorly. But you are doing so well; as Debbie says, keep going!!!

The impact on your mental state is understandable too. You've always managed to sound so upbeat and positive, but this in itself can be tiring; putting on that brave face and smiling all the time.

Make sure you take time to support your mental health too . . . Whether its through talking to your supportive family and friends, contacting support groups (don't know if that's something you're doing?) or by writing to your virtual buddies on here to let them support you!

Debbie's words are also wise about how differently you'll feel after a few more months down the line; in time, you'll look back and see how far you've come. Though it's hard to think like that at the moment.

Stay strong and feel proud of yourself, Nicola!  We're all right behind you and alongside you!

Love and hugs to you and your daughter,

Jo xxx

Hi Nicola,

Sorry to hear that this is becoming a struggle for you. You seem to be pretty much exactly how I was at this stage. I remember the cough (mine was caused by the excess mucus) and the mental impact of moving to solely PEG feeding. The fact that I was using the PEG for all my food and liquid quickly became acceptable and not a problem - in fact I was grateful for it. From memory I think it was 3 or 4 weeks after the treatment finished before I could take food by mouth again. Then it was a question of experimentation - mashed potato/veg with heaps of gravy followed by ice cream or yogurt worked for me.

I missed the last two chemo sessions due to a very low white cell blood count and extreme nausea - I suffered with this more than most. I would recommend that you continue with the Cisplatin if at all possible but do not be distressed if you do have to forego one or two of them - it is not uncommon, apparently. I would let the experts decide - that's what happened with me, they told me that I was too ill to take the last two but that I shouldn't worry about it because this was quite normal. I think you should be guided by what the doctor advises - he or she will know what your blood counts are and what the impact is on your system.

You asked how I am doing now - well, I'm afraid that, despite my clear scan, I have some ongoing problems that are causing me some issues. I would stress that these problems are particular to me and you will not experience the same. I am currently having night sweats. I wake at about 2 or 3am sweating in what can only be described as a state of fever. I get up for 30 mins or so, shower, and then I am okay again. I feel fine throughout the morning until just after lunch and then I come over all nauseous - this then lasts for the rest of the day. I still only weigh 10.5 whereas I should really be 12 stone. I have been to the GP a few times and I have had several blood tests - these all show that my white and red cell counts are low whereas my vitamin B12 level is more than double what it should be. The GP has been pretty useless in this area. It is now three months since my treatment finished so my blood should, I feel, have returned to normal. The GP has said he will write to a hymnotologist for advice. I am quite worried about this situation. I have an appointment with the consultant for my first check-up on 19th Dec so I will raise this with him.  

Food tastes pretty much how one would expect although I still have to avoid anything spicy including tomatoe ketchup and black pepper. Yesterday I had mince pies and cream and today I've had Christmas pudding and cream.  I am going to try a Jack Daniels and Coke tonight!

I am due to have my PEG removed on 20th Dec. I still use it first thing in the morning because it is an easy and quick way to load up with 800 calories. I will be glad to see the back of it though. Having said that, it has been a life-saver.

Nicola, I repeat that the above problems are unique to me - you will not experience these. You've nearly broken the back of this now. You will get more and more comfortable with the PEG and you will return to normal eating in a matter of weeks. My taste buds have returned to near normal and they are still getting better all the time. I also thing that I am slowly producing more saliva.

Remember not to focus too far into the future - I found that this helped. Take up all offers of support and assistance and just think about the next few days. You will get through this and it will quickly become a distant memory.

We're all thinking of you.

Simon XX

Hi Nicola

Was just searching for information on 'prolonged pain post PEG insertion' and it sounds like we have much in common.  You have been through a real nightmare with your PEG surgery - I thought mine was bad but poor you.  I really hope you have the worst of this experience behind you. 

I have throat cancer too.  Lump in neck found on second day of my Algarve holiday on 23rd August; GP day I got home, Maxillofacial consultant a week later (luckily I had private health insurance through work or it would have been a longer wait).  Originally thought to be in the parotid salivary gland and 95% likely to be benign.  Lump removed on 19th October, results 10 days later revealed it was malignant.  Further scans (MRI, PET, CT) showed it was a secondary cancer spread from a primary at base of tongue/left tonsil.  What I still can't get my head round is that I have never had any symptoms or pain from my throat.  Tonsil removed 15th November.  Recovery from both these ops was a piece of cake compared to my PEG insertion last Wednesday!

Wheeled from Ward to endoscopy unit for my appointed time of 1.30.  Nurse there discovered that my signed consent form was not in my folder.  They rang Ward 32 and after a very long wait were told it was still there.  They asked Ward 32 to deliver it to Endoscopy ASAP.  Meantime I lost my first place on the list and had a very long wait.  I did ask if I couldn¿t just sign another consent form and was told no.  Folder with my form finally arrived from Ward 32 (in time to get me into theatre at 1450 hours) but the form was filled in for the wrong procedure (RIG not PEG).  Dr Chaw pointed out the possible risks/side effects before I signed the form but I didn¿t see the other side or I might have picked this up myself.  So I ended up signing another form in theatre ¿ why couldn¿t this have been done at the start?  The procedure was the nastiest experience I¿ve ever had.  I¿ve had endoscopy before for acid reflux and didn¿t find it half as bad (not sedated, just back of throat numbed to stop gagging). With the PEG insertion I felt I was gagging all the time, had difficulty breathing and fully aware of everything that was happing including all the pain and tugging inserting the tube.  Would not want to go through that again without a full anaesthetic - so much for being told I probably wouldn't remember anything.

Four days on and I still have terrible pain in my tummy around the tube site.  Called out the district nurse yesterday who told me it looked fine (I know it's not infected and it is flushing fine with no pain) but I really thought the pain would be settling down by now.  I'm fine as long as I'm lying down.  As soon as I move about it is really uncomfortable.  I decided to drive myself into town (4 miles away) to finish my Christmas shopping today.  I was only there an hour and was almost passing out by the time I got home.  Bending, sitting up/down (esp getting in/out of car), rearranging pillows in bed is just agony.  I think I will call the hospital if it hasn't improved by Tuesday.  Most info I've found online seems to indicate I shouldn't be having this much pain at this stage.

My mask is made too but still have a similutor appointment to check things before my treatment starts on December 23rd (first of daily radio) and first day of chemo on Christmas Eve.  My hospital doesn't treat on Christmas or Boxing Day so I think I'm getting double doses either side and keeping my fingers crossed I might still enjoy Christmas Day.  I do hope you can too and I guess we can follow each other's progress and compare notes on here.

I haven't read your previous posts but will do so now.  Looks like your timescales might be similar to mine as you've been on here since mid-August.  I was following Access, Jacmay and Debs posts re branchial cyst (they thought mine might be that at one stage) but haven't chipped in until now.

I thought I was being really strong and positive about everything after two ops (lump removal then tonsil out) until this eposide.  I started wondering if I was being a real wimp and if I struggled to cope with this how the hell am I going to cope with the actual treatment?

I've just re-read your last post and see that you have by now started your treatment and hope it is going as well as it can be.  Are you having daily radio and weekly chemo or something different?

Very best wishes

Irene (isjheatherlea11)