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92,278 Views 507 Replies Last post: Aug 26, 2014 8:16 PM by isjheatherlea11 RSS Go to original post 1 ... 13 14 15 16 17 ... 34 Previous Next
Meerkat@65 598 posts since
Jul 31, 2013
Currently Being Moderated
211. Jan 27, 2014 10:48 AM in response to: Nicola2209
Re: Tongue Cancer - Diagnosed two days ago

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

Deb67 206 posts since
Feb 8, 2013
Currently Being Moderated
213. Jan 27, 2014 8:39 PM in response to: Nicola2209
Re: Tongue Cancer - Diagnosed two days ago

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

 

SimonSmith 143 posts since
Jun 9, 2013
Currently Being Moderated
215. Jan 28, 2014 5:34 PM in response to: Nicola2209
Re: Tongue Cancer - Diagnosed two days ago

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

Deb67 206 posts since
Feb 8, 2013
Currently Being Moderated
216. Jan 28, 2014 9:26 PM in response to: Nicola2209
Re: Tongue Cancer - Diagnosed two days ago

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

 

Meerkat@65 598 posts since
Jul 31, 2013
Currently Being Moderated
218. Feb 1, 2014 2:40 AM in response to: Nicola2209
Re: Tongue Cancer - Diagnosed two days ago

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

 

Deb67 206 posts since
Feb 8, 2013
Currently Being Moderated
219. Feb 1, 2014 11:07 AM in response to: Meerkat@65
Re: Tongue Cancer - Diagnosed two days ago

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

 

isjheatherlea11 60 posts since
Nov 3, 2013
Currently Being Moderated
220. Feb 1, 2014 4:24 PM in response to: Nicola2209
Re: Tongue Cancer - Diagnosed two days ago

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

SimonSmith 143 posts since
Jun 9, 2013
Currently Being Moderated
221. Feb 2, 2014 12:24 PM in response to: isjheatherlea11
Re: Tongue Cancer - Diagnosed two days ago

Hi Nicola,

 

Regarding your sleeping, I remember that for a few weeks after treatment my sleeping was very hit and miss. I would wake up after only an hour or so and then have to get up and read/watch TV for a while. That passed after a few weeks and I now sleep for 8 or 9 hours on most nights - I have the normal interruptions where I have get get up and shower following nightsweats on some nights, or where I have to take a few sips of water, but generally I get back off to sleep okay. Prior to treatment I was a 5 or 6 hour per night person - I don't know if I'll manage to return to that.

 

I think that the dry mouth has improved very slightly - or it may be that I'm just getting used to it. Obviously I carry water with me whenever I go out and I guess that this is just a lifestyle adjustment that needs to be made.

 

My ulcers are continuing in anger and they are very painful. They are slightly improved today though. The oncologist was a bit concerned when I told him I was taking Oramorph for the pain - one of the ulcers is that size of a one pence piece and the pain is incredible (it rubs on one of my back teeth) - if he thinks I'm taking Asprin for that then he's seriously wrong!

 

I am managing some more adventurous food. I can now take food that is hotter than lukewarm (although nowhere near piping hot yet). Last night I had cheese and onion pasty, mash and sprouts covered in cheese sauce and I managed that without too much trouble. I also have half a tin of microwaved rice pudding with sultanas for dessert. I know how to live.

 

My taste is pretty good although I can't take anything with black pepper in or anything that is at all spicy. Like Debbie I used to like curry but I can't even take curried baked beans at the moment.  My taste buds were pretty non-functional immediately after treatment so I think that you can expect yours to recover over the next few days/weeks.

 

My neck is still a bit stiff and weak although this is improving albeit slowly. I still have an intermittent sore throat but again this is slowly improving.

 

It's incredible to think that I am now five mouths out of treatment and I am still having these issues. The good news is obviously that I am still clear of the tongue cancer so I continuously remind myself that this is all a price worth paying.

 

The lymph nodes in my groin are still swollen and this, along with my nightsweats, fatigue and itchy skin are somewhat worrying. My wife and I are trying to take the optimistic view that I couldn't possibly be so unlucky as to have one cancer cured only to get another! It is a worry though. The GP examined my nodes in the week and agreed that they are swollen and he sent me for a chest X-ray to rule out TB (no way is it TB!).

 

Irene - It is absolutely brilliant that you have got to the end of your treatment - well done you! Like you, my skin went very red but it did not break down - hopefully yours won't also. I also had low white and red cell counts and these did resolve in time (although my red count is still low but improving slowly). The oncologist said that blood counts can take up to a year to stabilise post treatment. Be sure to avoid people with colds or infections - you're on the home straight now and some other infection is the last thing that you need.

 

I have my latest check-up with the oncologist on Thursday - although it's technically an ENT clinic he will be hearing all about my groin nodes! As I said to Nicola, I am trying not to worry too much but it is playing on my mind - I'm trying not to constantly check my nodes (certainly not whilst walking around Waitrose anyway). Apparently, the only real way to check that a swollen node is due to infection rather than cancer is for one to be removed and then biopsied - that is what I will be looking for on Thursday.

 

I do so envy Debbie being back on the curry - what I wouldn't give to be able to sit down with a vindaloo and a pint of lager - maybe one day.

 

Anyway, sorry for all my woes. We are all in a better place than we were a while ago and I guess we need to keep that in mind.

 

Best wishes and good luck to you all - I'm off for another slug of Difflam.

 

Simon xx

isjheatherlea11 60 posts since
Nov 3, 2013
Currently Being Moderated
222. Feb 5, 2014 9:35 AM in response to: SimonSmith
Re: Tongue Cancer - Diagnosed two days ago

Hello Friends


Simon, you crack me up "off for another slug of Difflam" that sums it up in a nutshell though doesn't it?! 


Sleeping patterns - yes that all sounds familiar to me too, wakening up after very short spells, however I did have a good night on Monday so feel I have caught up a bit.  Sorry to hear those ulcers are still giving you so much grief, they are such painful little blighters aren't they - aspirin - what?  So the long, slow journey back to eating is also progressing but all this five months after the end of treatment, so slow is certainly the operative word.  I must be PATIENT! Nicola, you are making good progress too, it must feel like it's taking an eternity, but hang on in there you are doing a great job and you will get there!


Yes it's great not to have to face the daily trek to hospital any more, however I did end up back there yesterday. Just an administrative thing which I'm sure could easily have been avoided and saved us an extra journey - frustrating!

I was issued with a leaflet by my Radiotherapy Dept when I completed my treatment on Friday. 

It advises you what to do  when skin on neck 'breaks down' i.e. go to your GP who will prescribe Hydragel

or ask Practice Nurse to apply a Hydragel dressing.  So it this happened on Sunday (of course), phoned GP surgery

first thing Monday and eventually got through around 9.30 due to usual Monday morning rush to be given appointment
for 3.40. GP and nurse have little or no knowledge re product which has an online drop down menu as long as your arm
and a multitude of dressing sizes and formats. Doc got the ruler out and plumped for the one that looked nearest the size,
printed my prescription and of course (I knew it!) the chemist didn't have it and couldn't get it till this afternoon.  
Overnight my neck got worse so I rang my specialist nurse (should have done so yesterday but was only following discharge leaflet!).   
By 11.00 a.m. we'd been to Ninewells and back, been shown how to clean off dead skin and apply dressings and sent home with supply 
of swabs and patches - (Mepilex Lite) completely different to the Hydragel the leaflet suggested but def the right ones for the job, so 
much more comfy now!  Why couldn't they have given me this info on Friday I wonder?  
When I asked they said they were in the process of updating all the literature!

 

Today my throat is really sore again and producing lots more mucus.  Struggling to get down sips of water.  I'd been feeling quite good over the weekend

and planning to visit my parents today (looking as good as my sister told me I was on Sunday) but today I might have difficulty passing that off!

Having been told side effects are likely to peak 7-10 days from end of treatment, I guess this is only to be expected.

 

Lots of friends are sending me ideas to keep myself amused during the next phase, knitting patterns and wool (charity baby knits), tapestry kit, film recommendations and books etc.  Something weird going on with my skin in general though.  I was looking forward to a proper manicure with acrylics from my daughter today, but think I need to shelve that.  Every single finger feels like it's about to break out into hacks despite lashing on handcream and Snowfire for the past few days - just excessively dry which I suppose is all wrapped up in other issues.

 

Off for a slug of water!

 

Apologies re formatting issues again!

 

 

Irene xx

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