Hi Nicola,

Lovely to see a post from you, but sorry you've not had a good week!

It's a shame you had mixed messages from the Oncology team regarding your fertility. So glad that your regular oncologist was able to allay your concerns and go through the statistics with you. It's great that your appetite picked up too, once you felt more reassured!

I hope you're able to reach the goal your dietician has set you. It sounds like you're getting there with your Ready Brek, custard and rice pudding! Keep up the good work! Hopefully, the Fortisips and calorie booster drinks will help you put some weight on too.

My weight seems to have plateaued just below 49kg (7st 10lb) no matter what I eat! Ah, the joy of a stoma! You put food in, but  it's out mighty quick!

My chemo had to be stopped as I was intolerant to it! Apparently I was in the 5% of folk who are unable to process it (something deficient in my liver!)

This pleased me as I'd had a rough time over Christmas, but the downside is, I can't have anymore, should I need it, after my liver resection! Let's just hope the liver surgeon does a good job!

I did have some good news regarding the chemo though; my last CT scan showed that one of the cancer spots on my liver was now undetectable! Yay! Though this does mean that a resection op may need to be delayed as the surgeon wouldn't be able to 'see' the cancerous area to remove it! And we'd need to wait until the cancer grows again!

I'm having an MRI scan on Weds and when the results are in, I'll be sent an appt with my liver surgeon. I'm hoping this scan will show where the cancer spots are and the op can go ahead! Am I odd for wanting an operation to go ahead?

Another plus, my energy levels are building and I seem to achieve great things each day (I painted a window sill one day!) and I'm also able to stay awake until 9 o'clock at night before I crash and burn on the sofa!

Well, Nicola, keep up the good work of putting weight on and supporting your other buddies on the forum!

Love and hugs to you and everyone else on this thread! Jo xx

Hi Nicola

I was told at the beginning of my treatment that the chemo might bring on the menopause. (I'm 46). My periods stopped for 6 months and so I thought it had. I felt a bit annoyed that the cancer was responsible for that too! However, after 6 months, my periods just started again and have been as regular as clockwork ever since!

I know we're all different but I just thought id let you know my experience.

Debbie

Thanks so much Debbie, that makes me feel so much better! It's strange that we all get told different things isn't it, you being told it could bring on the menopause and me being told I had nothing to worry about. Do you think your weight loss contributed to your periods stopping too? I'm hoping some weight gain will help mine return, but it's still good to hear from another female who has received the same treatment as me.

Nicola

Hi Nicola and everyone else (this thread is really like one big support group),

Nicola, I am glad that you seem to be doing so well - you really have made excellent progress overall and I feel that you are ahead of me in terms of recovery. The dry mouth is a worry as far of the welfare of our teeth is concerned. I think that my saliva situation may have improved very slightly - I now only wake at night maybe twice with Ghandi's flip flop. I must confess that I haven't been doing the salt water as often as I should. I'll step it up and let you know how it goes as salt water is good for the gums and teeth in any case. I do clean my teeth now maybe 4 or 5 times per day and I use Difflam 2 or 3 times per day.

My food is very slowly improving. My main hurdles now with food are the odd ulcer that I seem to be getting, the fact that I have no appitite most of the time and the reduced saliva in my mouth. I am only getting around 1200 calories per day but I don't seem to be losing any more weight. I do have three meals although I cannot take anything with a lot of sugar in for some reason - probably just as well with the teeth situation in mind.

My issues at the moment are occasional extreme fatigue - for instance, today I could barely drag myself out of bed and it was a real struggle to make myself do anything constructive. I have also been experiencing some strange itching all over my body for a few days - this has been so bad that I scratched to the point where I drew blood. Fortunately the itching doesn't seen so bad today so maybe it's going away. The good news is that I haven't had any night-sweats for a couple of weeks now. One concern I have is that I have noticed that the lymph nodes in my groin are palpable. They are baked-bean size and are hard - I noticed them when I was in the shower. I don't think it is anything to worry about but you know how the slightest thing can set hares running. They may always have been like that and it could be that I've only just noticed. I will keep an eye on them and raise them with the oncologist at my next appointment.

Well done for all the progress you have made, Nicola. We are all so pleased for you.

Simon xx

Hi Nicola

I was told that it was the chemo drugs that would make my periods stop. Although I lost weight, I've only gone down to what I should be so I don't think it was that.

You are doing so well - keep that positivity going!

Debbie

Hi Simon,

Could it be that you are coming down with something to cause your lymph nodes to swell up? Sometimes that can be a sign of a virus or similar? Worth getting checked though. I'm sure it's nothing but I understand how it will worry you.The dry mouth I can sympathise with. It's like no other dry mouth ever before isn't it?! I don't think I can put into words how dry my mouth is in the mornings, and during the day sometimes. Even water doesn't slide down like it should, it kind of gets stuck amongst the dryness!! How is your taste? Have you re-gained your taste buds or has it been gradual? I don't seem to have much taste yet.

I'm not sleeping well at the moment, can't get to sleep then when I do, it's broken sleep, then I really don't have the energy to get up in the mornings so I understand your lack of energy. It's frustrating isn't it? The cocodamol doesn't help either. I'm avoiding driving at the moment until I'm feeling up to it, also my neck is still pretty sore and stiff from the radiotherapy so I'm stuck in the house all day everyday. It's getting increasingly boring, I'm going mad! Not having three meals a day to break up the time doesn't help but I do look forward to my daily bowl of porridge! I ate a yoghurt today too which I was dreading as I thought it was going to be painful but wasn't too bad although my throat did sting after. Yawning is also very painful, it stretches muscles I didn't even know I had!

Debbie - thanks for the info. I spoke to my GP about this yesterday too and she was also reassuring. Also, how was the recovery of your taste buds? Did they gradually come back? I have some taste but not a lot and I'm hoping this will improve as it's still early days.

It was Irene's last day of treatment today, I do hope she is ok.

Speak soon,

Nicola xx

Hi Nicola,

Apologies for not replying sooner to your last post to me!

I have been following the Roy and Hayley story on Coronation Street. Although I'm not in the same position, the storyline has really moved me and there are so many aspects of it that I'm sure most of us can relate to. I think it will have raised a lot of discussions/debates in many households too.

Sorry to read in your post to Simon that you're not sleeping well. It must be hard having such low energy levels during the day, especially with an active toddler to look after! As you can see from the time of this post, I'm in a similar boat to you! Thankfully, it's a bit of a blip and the fact I fell asleep on the sofa for a few hours, hasn't helped!

I hope your sleep pattern soon improves, along with the neck pain you're experiencing. You've come such a long way, Nicola. Keep going!

Love and hugs, Jo xxx

Hi Nicola

My taste came back fairly quickly. Certainly within three months of the treatment ending. I had been told that I may not be able to eat spicy food again but fortunately it's fine and I was soon back on the curry! Yippee!

I can't drink red wine any more as I no longer like the taste. Also, dry food can be a bit difficult so, for example, it is now better for me to eat a tuna sandwiches than cheese sandwich  and chip sandwiches are too difficult. I think it's the lack of saliva because I find it harder to swallow really dry food. However, it's all pretty minor and nothing to worry about.

I didn't live on a diet of curry, red wine and chip sandwiches before! Honest!

Debbie

Dear Nicola and Friends

First of all sorry for not posting sooner.  I bought myself a little notebook/tablet thinking it would make communication easier over the next week or two when I'm expecting to be feeling at my lowest (so they keep telling me) and unable to sit in a draughty hallway on a not-very-comfortable chair at my PC desk.  However it's taking me a while to get to grips with the navigation and I keep losing stuff which is infuriating.  I typed up a couple of paragraphs on it a few minutes ago and managed to lose them before I had saved/posted the comment, so I'm back at the trusty old PC!

Well pleased to report my second stay in hospital did the trick again and I had a few good days last weekend with feeding and sickness back under control. Then on Tuesday I went for chemo as usual and found my blood count was too low, so instead had to have a transfusion and they gave me my chemo on Thursday instead.  All went well but I've been told to be extra vigilant re nausea/vomiting having missed last week's chemo and had this week's two days late. So far so good, but I am stepping back a bit on what the dietician instructed me as I did feel a twinge of nausea last night/this morning so cut the dose rate back and had plenty of breaks rather than risk getting back on that sickness trip again - no thank you!

So my final treatment was yesterday - it was a huge relief to know that I no longer have the daily trek to and from hospital, but strange not to be able to celebrate in a traditional way by eating or drinking!  I have been having lots of pampering sessions though, both at hospital, in the Maggie's Centre and from my daughter at home.  She's doing a manicure for me next week!

My neck skin is getting really red now but much later in the treatment than most and has not yet broken down, but I am keeping an eye on it!  I've been advised to ring into my support nurse with even the slightest problem or to go and see my GP with any skin issues.  My throat has been really sore the last couple of days and the mucus tastes just vile with nothing to alleviate it (must get to Holland and Barratt Simon but not handy for me).

Nicola - so sorry to hear you have had the added worry of fertility issues through mixed messages from the medics.  I do hope everything works out OK for you, it sounds like there is hope after all.  I have been following Roy and Hayley's story on Corrie.  I think they have handled the storyline very sensitively in general and although in ways it has been too close too home, it has also been a valuable insight into coping with a terminal situation. Sadly I recently lost two of my new-found friends who were in neighbouring beds during my first 3 night stay in hospital.  When I went back to the ward for my second in-patient experience one had passed away and the other did just a few days later, which was such a shock although a blessed release for both of them as they were in such pain.

On a positive note, I had a delivery of beautiful flowers this morning from my Mum, Dad and sisters.  Probably the first time in a while I have 'welled up' but it has been so good to have the support of family and friends, old and new, offline and online.  They also warned me I might feel emotional at the end of treatment anyway so I guess that's why!

I understand what you're saying Nicola re water getting stuck among the dryness - in fact that's a great way to describe it.  Sleeping is also really weird for me, just catching very short but sound naps and not feeling I'm getting any proper quality sleep.

Simon do please keep an eye on those lymph nodes and check with your oncologist ASAP?  Jo - sorry to hear about your chemo problems and hope all resolves itself satisfactorily i.e. you get your op as planned - no I am sure you are not odd to be wanting that!  Debbie - glad to hear your taste buds came back pretty quickly and you are back on the curry, red wine and chip sandwiches!  Seriously, it is good to know that any problems are minor ones.  I have my nephew's wedding on 14th April which my dietitian is using as my goal to be almost eating a full meal by then - fingers crossed!

Sorry this has been a bit rambling but thanks again for all your support and advice guys.  I will probably be asking lots of questions over the next week or two.

Love Irene x