Hi All,

During my review appointment yesterday with the speech therapist, nurse and dietician, they have told me I will need to be admitted to hospital if I lose anymore weight. I am currently 5 stone 5, this sounds tiny but I am very petite, only 4 ft 11" tall and normally only weigh between 6.5 and 7 stone. I don't think I've ever been heavier than 7 stone in my life, other than when I was pregnant. So it's no shock to me that my weight is this low, my aim was always to stay above 5 stone if I can. But they have other ideas! It baffles me that in the beginning they said I wouldn't even need a PEG at all and I had to beg for it. Now they say I'm losing too much weight! I told them blank, I'm not going into hospital, not a chance. I opted for the PEG as I was worried I wouldn't be able to eat and I didn't want to risk being in hospital to be fed fed via my nose. So I went through all of that pain and problems of having the PEG, so there's no way that's all going to be for nothing! They have said I must try some ice cream or anything I can manage to add some calories. I have been told to have five Fortisip drinks per day going forward, I've been having four so I will now move up to five.

I went to the supermarket yesterday, had a really good look around to try and find things that I could possibly manage to swallow. I bought a few things but I know it's probably a waste of time but I will give it a go. I'm finding that the consistency of ice cream, custard, yogurts are the worst things as they tend to stick to my throat and my throat/pallet are in the area of treatment so also sore and ulcerated. So I'm leaning more toward drier consistencies, such as a biscuit or cake, washed down with water. I'm going to try them today. Can anyone suggest anything?

A feeding machine was also talked about, apparently I can hook myself up to it at night to feed me so that's something to think about. I'm also going to be given a nebuliser tomorrow to help with the mucus. I felt I was doing well but yesterday's review has bashed my confidence. I'm trying not to listen to them too much, I know what I can manage and what I can't. I desperately want to stay out of hospital so I will force myself to swallow something and I don't feel that being in hospital will aid my recovery at all. I need to be with my little girl, especially at Christmas.

Annabel - I won't be able to have Christmas dinner this year unfortunately. That was my initial target following my surgery back in September but that was before I knew I needed radiotherapy and chemotherapy. I'm using the PEG all the time now and I anticipated another couple of months before I attempt to eat via my mouth, possibly longer. My daughter is only two so doesn't understand all about Christmas yet but she does get very excited when she sees Christmas trees etc! She has rearranged all of the baubles on ours numerous times already and only the chocolates at the top of the tree are still in tact! I think I'm more excited than she is, I can't wait to see her open her presents, that's what's spurring me on right now.

Simon, sounds like delaying the removal of your PEG could be a good option for you. Your body has been through so much, perhaps everything is taking a little longer than usual to heal at the moment. Maybe let your doctor get to the bottom of the night sweats and nausea before putting yourself through something else? I was glad to hear you've had similar contact with the nutritionist regarding your PEG so I'll stop worrying about that for now. Thanks for your reassurance about the sweating, I was hoping that would be the case. This is all so un-glamorous! Do let us know how your appointments go this week, I'll be thinking of you.

Debbie, thanks for your reassurance also. This mucus is never ending, if I don't spit it out, it just dribbles out of my mouth! It's horrible! I've taken on board what you said and am counting down to the new year for when it might let up a bit!

Never have I wanted to wish time away as much as I am now!

Speak soon,

Nicola xx

Hi Nicola,

Really sorry to hear that you're having issues with your weight.

Thinking back to what I was able to eat......

The NHS milkshakes by mouth or PEG - these are a good option as they are so high in calories. 400 per pot is a lot and you will struggle to find anything higher in calories of the same volume.

Soup (veg or potato & leek etc). The soup isn't high in calories but I used to soak some soft buttered bread in it (Warbertons is high in calories).

Scrambled eggs, cheese omelettes and fried eggs.

Tinned rice pudding (although you might need to water down with cream or milk as I found it quite thick).

Tinned macaroni cheese

Microwaved baked potatoes (the skins go soft instead of crispy if you do them for about 8 mins turning once) with spaghetti hoops and grated cheese.

Tinned spaghetti bolognase.

Tinned ravioli

Angel delight (butterscotch was nice).

I personally couldn't manage anything dry. The food pump sounds like it might be a good option - it's surprising how hard it can be to eat when you have no appetite. It is amazing to think that you had to persuade them to allow you to have a PEG fitted.

I phoned the hospital yesterday and asked them to cancel my PEG removal for this Friday as I feel that it is just a week or two too soon. They said that they would reschedule for early in January. I still use the PEG for two pots at breakfast and I would struggle to make the required 800 calories per meal without it. Last night I had another Fray Bentos steak and Kidney pudding - they really are quite disgusting but it's 900 calories.

Good luck for this week, Nicola. We're all thinking of you.

Simon. XX

Hi Nicola

Thanks for yours.  I haven't spoken to MacMillan yet re the financial stuff, but I will certainly do so.  I'm still working (till Friday) with lots still to do/notes to write up so I can hand everything over feeling reasonably relaxed about being off for so long.  We are a very small team so my absence will have quite an impact and I'm trying very hard to leave comprehensive notes on all that my work entails before I leave them in the lurch.  So I'm oping to get down to paperwork/admin stuff for myself between Christmas and New Year when hopefully I still have a bit of energy.

I now have my full treatment plan.  I start on Monday with radio, then both radio and chemo on Tuesday.  Several days of double radio morning and afternoon to compensate for the 2 days holidays at Christmas and New Year. Because I haven't really had any pain/symptoms other than the lump removed from my neck, it is so weird that sometimes I can still forget this is happening.  I do know I am running out of steam at work but only 2 days to go; I think that is the only sign that I am ill.  Therefore when I went to hospital this week (simulator sessions for final checks with my mask) after not being there for a week, it suddenly hits home again that this is for real.  Oh, they also checked my PEG, which has eased up considerably but sometimes can still be uncomfortable) and are happy that it is OK which is reassuring.

I've just seen your later post so will reply to that in a mo....

Best wishes

Irene x

Well Nicola, you are certainly going through it now and my thoughts are with you.  It's what I've been well warned about, the end of treatment and the few weeks after are the very worst. To hear about it direct from you is a bit daunting but also good for me to know exactly what I might have to face.

I will keep my fingers tightly crossed that you manage to keep your weight stable to avoid hospital at all costs and enjoy Christmas with your little girl.

I dread the mucus thing.  I have had a problem with excess cattarh in my throat for around 3 years (post nasal drip they call it - just that my body is over-producing cattarh) and have been to-ing and fro-ing to my GP with this complaint since it started December 2010.  When I got this diagnosis I was convinced there must be a connection and I've asked the question of every single medic I've crossed paths with, however they all say it is highly unlikely to be related. Anyway, forewarned is forearmed!  I hope it settles down soon and really do send my very best wishes to you. 

Let's all look forward to a happy and healthy Christmas 2014.

Irene x

Hello Simon

I've been following Nicola's story and taking note of your nutritional recommendations.  It takes me back to the novelty convenience foods which arrived on the supermarket shelves in the 70s - especially Fray Bentos pies and Angel Delight!  I will certainly bear all your suggestions in mind when the time comes.  They assure me it is more likely to be when than if, but I am carrying a fair bit of extra weight to start with and hoping that might help me fight it.

Wishing you all the best for a speedy recovery.

I'm just about to start out on this horrible journey so wish me luck!

Irene x

Hi Irene and Nicola,

Irene, you're right about the 70's food - Angel Delight and Fray Bentos are very much of that era. At least I haven't moved onto Party Sevens and Babyshams. Good luck on your journey - it will be well worth it in the end and I can honestly say that time does fly by once the treatment starts.

Nicola, I don't think you're old enough to remember the 70s - you really had to be there!

One thing I left of the list is porridge. I've been trying those Quacker Oats boxed sachets where you just measure the milk out from the empty sachet, tip onto the porridge and then microwave for 1 - 2 mins. They do some nice flavours like apple, rasin and cranberry, and golden syrup flavour. I add a few sultanas to mine. The porridge doesn't contain a huge number of calories but you can use full fat milk and even add cream. I have to let it cool down for a long time because I can't take anything too hot at the moment.

I had my second all clear from the consultant today - you will both be there soon. My blood is slowly improving although the nightsweats remain a mystery. He did say that they may go as and when my blood counts get back to normal - hmmmm, we'll see.

All the best.

Simon XX  

Thanks Simon that's all very encouraging.

I'll bear in mind the Quaker oats as well.  I've tried the golden syrup variety before and enjoyed it.  Yes, I thought the 70s reference might be lost on Nicola! In fact I'm now thinking they probably appeared in the late 60s! Butterscotch Angel Delight does bring back fond memories.  We used to make it with Carnation milk to make it even nicer.  Now this is really beginning to sound like my old bad habits of comfort eating, so just hope I am still able to taste it when I take that trip down memory lane.

I'm on a bit of a pre-Christmas high having finished work this afternoon and feeling happy/relieved that I've managed to keep working till now and haven't left too many loose ends.  It's just like I've downed tools for our normal 2 week Christmas break and that's all I'm focussing on at the moment.  Fingers are tightly crossed that 2 days treatment won't interfere too much with Christmas day but time will tell.

I'll probably share my feelings/experiences here as things progress.

Best wishes and keep well.

Irene x

Hi Irene,

I think you should still be up to partying after two days. If the two days include chemo then just make sure they give you the anti-sickness meds - if you're on Cisplatin then you'll need them. They forgot mine at the beginning and I was hospitalised for 36 hours.

Nicola - If I've done my sums right your treatment is now complete - yippee! No more daily zaps. You're on the home straight, well done!

Seasons greetings to you both.

Simon.

Xx

Well done Nicola! You did it! Now make sure you chill out for a few weeks to recover and you may want to stock up on laxatives because the morphine made me very constipated! Sorry!

Now it's your turn Irene! Just so you know, I was diagnosed with tonsil cancer in February and had chemo/radiotherapy in April and May. I felt ok by the end of July and it all feels like a distant dream now! It's still tricky mentally because whenever I hear of or read about anyone else having cancer it brings it all back. Still, it does make you feel glad to be alive!

Simon - hope the eating is improving. Maybe you can manage some trifle on Christmas Day!

Sending you all positive Christmas vibes!

Debbie

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