Hi Nicola

Just read yours of 21 August - waiting for those test results was the hardest part.  While I don't think it's very good news that my cancer is secondary (considered locally advanced) I was absolutely terrified that it might have spread much further afield, so my results were actually the lesser of two evils.  I've been told that mine is still curable (albeit the treatment is radical and gruelling) and like you I am prepared for the fight, to do what it takes.  It is so unfair that you are going through this at such a young age and with a little one to look after, but I'm sure that she, and the need to be with her, will pull you through this nightmare .  I am 57 years old with just one daughter - now 28 but she is still my baby. One of the hardest parts for me was telling my parents who are aged 89 and 87.  Dad has been quite ill recently, in and out of hospital at same time as me, and they are both growing increasingly frail.  I am their baby (youngest of three daughters) so it was hard for them to hear.  My middle sister has also had cancer (lymphoma) diagnosed also just before Christmas 9 years ago and I am delighted to say she is going strong and now wrapped up in her two gorgeous grandchildren who arrived last year.

At the time my sister was ill I dabbled a bit in writing poetry. I hadn't written anything for years but on the night before I got my scan results I put my thoughts down on paper based on two possible outcomes, which I thought I might share with everyone (pardon the bad language!)  Thankfully the result I got was the first and by far lesser of the two evils:

RICTAMETER (2,4,6,8,10,8,6,4,2)

Cancer

dirty ***

silent tentacles spread

while you skulk around out of sight

for how many days, weeks, months, even years?

Fighting with sword, poison and fire

to hell and back again

I will kill YOU

cancer.

Cancer

silent killer

lurking unfelt, unseen

lowlife of the deepest order

I hear myself shout and swear, wail and scream

when finally you show your hand

the game¿s already up

you dirty thief

cancer.

12.11.13

Irene Johnston

Oh Nicola, I've read through all your posts now and can't believe what a dreadful journey you have had.  You are one very brave girl, bouncing back after every knock.  If I can tackle my treatment with half of your courage, then I think I'll be doing pretty well.  It sounds like you have never really made friends with your PEG.  I am absolutely hating mine but it's only been there 4 days.  I know everyone's different but just wondering how long it took for yours to stop causing you pain?

Sending very best wishes and every encouragement to help you through the rest of your treatment - hang on in there!

Irene x

Hi Irene,

Thanks for reading my thread and sharing your story. I'm glad my posts have been able to help/give an in sight to somebody else.  So sorry to hear your news, but like everyone else on here, we only get to meet each other due to being part of this same "club".

As for the PEG, they do not warn us how painful it can be. I was told it was a quick 20 minute procedure, I'd be sedated so won't know anything about it and that it would be sore for a few days. Sore?! I didn't call that sore! I was in agony! And I'm sorry to say it lasted for a good 8 days before it improved and then was still fairly painful for the first three weeks. Now it's fine, but I still get odd days where it's tender and sore. I was in tears with the pain sometimes and I'm no wimp! I remember crying to my mum telling her I wish I'd never had it however I am very grateful for it now as I am no longer able to eat via my mouth. It still gets a little gooey and crusty around the peg site and I have to clean it each day and spin it, but I will be glad to see the back of it and am already counting down the days for when it can come out! I remember getting a cramp type pain every now and then in the first few weeks, as if my muscle would suddenly contract for a few seconds, them release itself. Thankfully that only happens occasionally now but I couldn't lie down, I had to sleep sat up for a few weeks and just generally moving about was very painful. Well done you for attempting Christmas shipping, I couldn't of done that! You're probably in a lot of pain but it does get better. Do look after it though, keep it clean and flush it daily, the last thing we need is for it to be removed and another put in! I honestly think I'd rather starve than go through that procedure again. I think more aftercare is needed following a PEG and certainly more warming on how to cope with the pain, I was on Tramadol for a week.

Good luck with your treatment, mine sounds the same package as yours, six weeks of daily radiotherapy and weekly chemo (Cisplatin). I'm in week 5 now and I was coping really well until last week. I was getting myself to and from appointments and caring for my young daughter by myself and eating and drinking, but last week side effects really kicked in, this was from the chemo mainly, so I could no longer eat, feel weak and tired and nauseous. I'm relying on friends to drive me to the hospital each day now and I need a lot of help with my little girl as I don't have the energy. I find its taken me three or four days to get over the chemo each week, I have it on Wednesdays and by Sunday/Monday I'm feeling a bit better again. Radiotherapy is causing some unpleasantness in my mouth but nothing I can't handle yet and I just keep telling myself it's not forever and my mouth will heal in time. The hardest part for me has been the mental side of not being able to eat for such a long time. But when I can I will be making up for it! My relationship with food is going to change dramatically.

You sound a very positive person and I hope you have support to help you along the way. It has been tough at times and as I am a single mum to a very young daughter, I have found it hard sometimes to keep going and I'm doing it all alone. I think I would have found it easier if I had a partner to face it with so gather up all support you can. I have a rota for these next two weeks of different friends who are going to take me to the hospital or look after my little girl as I have just had to accept that I can't do it on my own anymore. Might be something you could think about organising for when times get tough. You'll be very tired and no food causes lack of energy so take all offers of help.

Feel free to ask questions or to just offload on here. This treatment really is a difficult and emotional time, we all need support to help us through it.

Speak soon,

Nicola x

Thanks everyone for your usual good words of support. I had a bad few days and was feeling pretty low but I started to feel a bit better yesterday so I'm going to make the most of today until tomorrow's chemo. Then I know I'll be feeling pretty rough again until next weekend but as tomorrow is my last chemo I feel more able to deal with it. My oncologist has changed my chemo drug slightly for this week, it's still Cisplatin but it's the sister drug which should lessen the nausea. He was worried chemo would jeopardise me being well enough to finish the radiotherapy so he said it was either change it or not have it at all this week. As much as I hate having chemo, I'd much prefer to have it than not at all so we're going with the sister drug. I just hope it doesn't cause any nasty other side effects!

Simon, I'm sorry to hear you've had a few issues. I hope these can be sorted for you as I am sure it's all a reminder of the cancer and you probably just want your life back to how it used to be. I guess we have been through such a lot, cancer is a big thing to deal with, so it's all going to take time to settle down. Night sweats and nausea isn't something you should have to live with so I really hope this improves for you. I'm pleased to hear you have been eating well and that your PEG is being removed soon. 20th Dec is my last day if radiotherapy so we can both look forward to that day! Please let me know how the procedure goes, as I'm already dreading having my PEG out!

Speak soon,

Nicola xx

Hi Nicola,

I'm really pleased to hear that you are feeling a bit more upbeat. It's also good news that this will be your last chemo session - another milestone gone. The end of your radiotherapy is in sight - I'm so pleased that you are nearly there. It is a struggle but it is worth it. I will let you know how the PEG removal goes. I've been told that it is much more straightforward that having it put in (which will be music to your ears considering the drama that you've experienced). I was given the option of having it taken out whilst awake or asleep - my pain threshold is normally pretty good but when I was asked the question I thought of your experiences and so I opted for the asleep option! In a perverse way I've got pleasant memories of when I've awoken after operations - I always feel nice and mellow.

I had a bad night again so I phoned the surgery at 8am - got an appointment for 8.30! Luckily I saw one of the better GPs and he's emailed for an urgent blood specialist referral - apparently I should be seen within 2 weeks. I just want to get to the bottom of my low blood count / nightsweat / fatigue issue.

I guess that you are like me in that you've been to more hospital and doctor appointments in the last few months than you have in the rest of your life combined. Just think, soon all this will be behind us and we can get on with the rest of our lives. I won't miss all the sitting around in waiting rooms.

Keep your chin up, Nicola - It's all worth it and you're nearly there

Best wishes

Simon xx

Hi Nicola and Simon

Just thought I'd let you know that my peg removal was fine in September. I was put out and, after the op, they told me to take paracetomol if I needed it. I only took one as there was no pain.

There was a hole but this closed up really quickly and I've now just got a scar (another one!). It's weird because sometimes it feels like the peg is still there and I have to feel my stomach to check!

So don't worry about the removal - it's fine!

Debbie

Hi Jo,

Thank you for your last couple of threads, you're still sounding so up beat.

Have you had your PICC line yet? How was it? Does this mean you have been able to have your chemo at home? How are you feeling afterwards? I finished chemo yesterday, so my PICC can come out now but I agreed to keep it in for a couple of weeks just incase I was to feel poorly and require anti biotics. I don't want to jinx anything and end up back in hospital! I'm not even getting my nails done until I'm absolutely sure there's no chance of getting ill and being admitted to hospital as I know they'll make me remove them!

I had a slightly weaker chemo drug this week. It was either that or no chemo at all as I felt very unwell after the fourth dose. Iim feeling nausea right now, hence being awake at this time so I don't think I will escape feeling yuck completely but I haven't taken today's anti sickness yet so hopefully that will help. I'm going to go straight in for the stronger stuff this week rather than are the usual anti sickness meds and see if it works, as it didn't appear to uesterday. Radiotherapy finishes next Friday so I have seven sessions to go, I feel I can see light at the end of the tunnel now, even although I'm told side effects peak a couple of weeks after treatment ends. I feel I'll find it easier to deal with the pain in my mouth if I know I don't have to trek to the hospital everyday. I'm going to ask for something stronger tomorrow, as paracetamol is good but I don't it think that alone is going to do the trick from now onwards. I'm getting used to the PEG now and I feel I have accepted not eating so that also helps.

I hope all is going as well as can be expected for you. These are such difficult times and I find so much help coming on here and speaking with people who truly understand. I hope I'm able to offer similar to everybody else that needs it. This is not the best time of year either, to be experience such tough times but hopefully we can all come back on here next Christmas with happier stories to tell.

Speak soon,

Nicola xxx

Hi Debbie,

Thanks for your reassurance about the PEG. I'm told I'll be sedated again and it just gets "pulled out"?! This scares me a bit, especially after all the problems I had at the start. I hope it's a different doctor doing the procedure! I was also told there's the option of them cutting it and leaving the soft plastic bit inside and it will just pass on it's own. Neither sound very thrilling to me but I'll cross that bridge when I get to it.  Considering I was told I would not need the PEG due to having only one side of my mouth treated, I'm very glad I persuaded them to change their minds! I don't know what I would do without it. My mouth feels horrible on both sides so the thought of putting food in there and chewing is a turn off so I really do need the PEG.

You must be very pleased to come to the end of this year having conquered what you have and being able to start a new year with all of this behind you. You must feel very proud.

Nicola xx

Hi James,

Thanks for posting on my thread. I'm sorry to hear your neck cancer has returned but if you have beaten it once, it's sounds hopeful you can beat it again. Treatments are advancing all of the time and I'm sure there is something new you can try since your last treatment.

Well done for getting through it all, I know how hard it is and I wish you lots of luck this time too. Keep us updated. Stories such as yours keep me optimistic too.

Nicola