Hi Nicola,

Great to see that your medical team are pleased with your progress. Their suggestion of adding cream or cheese sounds good advice to increase the calories. As you know, my diet is similar to yours in that I need the added calories (and salt!) and fibre is a No-no for me, so brown bread, jacket potato skins and too much fruit and veg per day, are not on the menu! (Still have trouble with this 'unhealthy' diet I find myself on!)

Glad to read that you're taking a friend to Euro Disney too! Bet you're looking forward to all the excitement of meeting Mickey and the Disney Princesses! We saw a lot of Chip N Dale when we were there (or Tic N Toe I think they were called in French! Or was it Tic N Tac?) Never mind!  I digress!

You mention 'granulation' when talking about your PEG. Excuse my ignorance, but what is granulation? I'm imagining over generation of skin cells round the PEG? Or am I wildly off beam?

You kindly asked about any updates on my liver op. You may regret asking

Well, following an MRI at the end of January, I met my liver surgeon in early Feb. I was aware that there were two, operable tumours in my liver from my previous scan in October '13. So my partner and I went into the meeting thinking we would be discussing the op and clarifying a date.

Unfortunately, my most recent scan showed another tumour had developed! I was rather taken aback as my last CT had shown that one of the tumours was no longer detectable! But CT scans are less clear than MRI's so sadly, there it was, in shades of grey, (don't think there were 50!     ) on the surgeons monitor! Three of the pesky blighters!

All the questions I'd prepared disappeared out of my head, so I've no idea how big they are, if they're near veins etc etc!

The upshot is, we're 'waiting' until April when I will be re-scanned to see if anymore stray cells have 'settled' and emerged as tumours. Then it will be decided if an op is still possible! Chemo is no longer an option as I had a mighty big reaction to it over Christmas!

The rationale behind the doctors advice is so that I'm not operated on now, only to find more tumours in a few months. I'm also hoping to have my stoma reversed at the same time - 2 for the price of one! But obviously, this all depends on the next scan results!

So in the mean time, I'm going back to work! I've already discussed a phased return with the head teacher, but it looks like I'm back in the classroom during week one! Hey, if I can deal with  bowel cancer, 30 kids ain't going to faze me! (Hollow laugh!!!)   

Maybe Simon and I can compare our 'Back to work' exploits?

I wish you well with your scan next week, Nicola. Let us know how you get on.

Take care, and keep up the good work! (Just practising for my 'back to work' )  

Love and hugs, Jo xx

Hi Nicola, Simon and Friends

Sorry it's a while since my last update.  I see you are both wondering about me which is really comforting to know and kinda telepathic Simon that I was trying to eat some Butterscotch Angel Delight as I read your post (more on that later!). 

I'm plodding along OK I think, but a couple more hiccups since I last posted.  Last weekend (why is it always the weekend?) I had another bout of sickness. We thought it was glut-related initially, but then it appeared to be getting worse as I tried to take my feeds so a change of of plan.  I tell a lie, I now recall it started Thursday evening when I threw up projectile-style en route to my GP to try and get my pain-relief increased.  I ended up being sick all Thursday evening and going back to hospital to see my specialist nurse on the Friday.  She took bloods which all tested fine, i.e. no dehydration this time, and things seemed to settle during the 3-4 hours I was at the hospital.  She was fairly certain like me that it was to do with the glut in my throat so just reminded me to keep sipping water and upped my MST.  Howewever I had to give up halfway through my night feed due to nausea setting in again.  Back to hospital on Saturday to be given a prescription for a new anti-emetic, Ondansetron (what a pallaver that was, satellite oncology pharmacy didn't have it in stock, and main hospital pharmacy was closed.  Went to the two big pharmacies at home in Perth to find neither had it.  Eventually got a generic form of the same drug at Superdrug and they ordered in the branded version to collect Monday.  All this involved hanging around for ages in the cold and wet when I really just felt like being tucked up in bed - not a happy bunny)!  So the pills worked, but then I had an allergic reaction - swollen face, slitty eyes, scaley rash on face and hives on arms and legs!  To GP on Monday for anti-histamine, which didn't seem to be doing anything by Wednesday so back again for steroid creams for my face and eyes and thankfully it has all settled now.  Sickness has also settled by increasing my regular one (Metoclopramide) and taking my previous back-up of Levomepromazine.  Other than that, you are right Nicola, I seem to spend a lot of time sleeping.  Almost every time I pick up a book or a magazine I seem to drop off after a couple of paragraphs!

I've also been trying little tastes of food but making no progress as yet (2 weeks since end of treatment so probably a bit early yet).  I had a sip of my husband's latte the other day and I could taste it was coffee, which was wonderful, but far too nippy on swallowing, which has been the same for everything else I've tried - ice cream, chicken soup, milk pudding.  As mentioned above I just made up some Angel Delight and while it tasted just as it should (I remember the last time I tried it during treatment I couldn't taste it much at all) it nipped like mad too.  I've just noticed that there are white spots on my tongue again, so am thinking I may need to go back to GP for more thrush-medicine! 

Nicola - really glad to hear that your team are pleased with your progress.    I've just re-read your post about granulation in the PEG area which reminded me I've also had an infection in mine (on antibiotics) and two nights ago my tube split between the two bungs at the top, so it was completely unusable and I couldn't take any feed that night.  Fortunately the district nurses sorted me out next day and even gave me a spare (the hospital are very frugal by comparison)!.   Also really pleased to hear it's all systems go for your Eurodisney trip and I'm positive that will help with your recovery process.  Very best of luck for your scan next week.

Simon - I will get to enjoy that Butterscotch A. D. one of those days!  I'm also taking note of your latest foodie recommendations for when my time comes. Can you recall how soon after end of treatment you were eating those?  Also best of luck with those biopsy results.  You mention your ulcers still have bad days as well as good.  Are you still taking Difflam (and anything else?) for those?

Jo - good to get your update as well and delighted to see you still have your sense of humour despite everything (something I am constantly being reminded is important). Funnily enough I was just trying to write a little ditty about one of my darker days of sickness when the 'fifty shades' reference also cropped up!  Very best of luck for your return to work and your next round of scans in April.

I'm due back to see my team on 26th February so will update you then. 

Love and best wishes to you all.

Irene x

Hi Irene, and welcome back - we were worried about you.......

You keep that Butterscotch Angel Delight at the ready - it's the future!

Seriously, in answer to your query about when I started to take food. My treatment finished on 4th Sept and I was unable to talk for around two or three weeks. I was solely PEG feeding until mid-October when I started to swallow water and really soft food such as jelly or custard. From memory that was about all I could manage for 2 or 3 weeks before I slowly progressed onto mashed potato and well-boiled soft veg. The main problem that stopped me eating was a very sore throat and mouth.

In relation to my ongoing battle with ulcers - I use Difflam every day and when things are really bad I dig into my reserve of Oramorph. The oncologist was horrified when I told him that I took Oramorph to deal with the ulcer pain, but then it's not him with an ulcer the size of a one pence coin on his tongue. Also, my wife tells me that I'm a lot more cheerful once I've had a shot of Oramorph!

I hope that you manage to keep the sickness at bay. The tendency to sleep a lot is not necessarily a bad thing in my view - I think that the body heals better when we're asleep and at least the time passes more quickly.

Take care

Simon xx     

Hi guys

Keep going - you are all doing really well!

Simon recovered quicker than I did. I finished treatment in the middle of May and I didn't eat until July! I can remember lying in bed in early July feeling as sick as a dog and not eating. I desperately wanted to be well for my friends wedding at the end of July and thought there was no way. However, by the time of the wedding, I was eating and I had a great time dancing the night away (even with my PEG!).

I agree that, if you feel tired (which I found to be more like jet lag!), you need to listen to your body and sleep. I know I've said it before but, once I started to improve, it happened pretty quickly.

Debbie

Hi everyone,

Just when I thought things were going ok, something else crops up....

I had my MRI scan yesterday. All fine, it took about 20 minutes and as I left I was told the results would be passed onto my consultant within 7-10 days. I already have an appointment arranged with my oncologist on 17th March for a follow up and I understood he would also discuss my scan results with me then. I didn't mind waiting until then for the results as everyone at the clinic is very confident that no cancer will be detected. After all, my treatment was the "belt and braces" following removal of the tumour during my tongue operation back in September so the treatment was a "just incase" scenario as they couldn't be sure if any cancer cells might have jumped further into the tongue and a scan wouldn't pick them up anyway as they would be so small.

Today I get a phone call from one of the head and neck nurses to say they want to see me at the dental clinic on Tuesday to discuss my scan results. I have immediately panicked and am thinking the worst as this is very sudden and less than 24 hours after finishing the MRI scan. After fretting for about an hour I call the nurse back (my usual head and neck nurse is not there today) and I ask if it's possible to speak to somebody today about my scan as waiting all weekend is now going to be traumatic. He agrees that it is rather quick to get results and want to discuss them and that it's likely something has been picked up from the scan for me to be called into the clinic so fast but he assures me he knows nothing. I have told him that four days is a long time to wait now when I'm obviously very worried so he kindly offered to speak to my Oncologist.

The nurse then called me back to say he has spoken to my Oncologist who has said none of them have yet seen the scan but the radiographer is concerned about something and he wants to discuss it further with my surgeon, consultant and oncologist at their weekly meeting on Tuesday morning. They will then see me at the usual Tuesday afternoon clinic to discuss with me. It seems obvious something has been picked up and I am now at my wits end. How on earth am I going to get though the weekend? This was not part of the plan! All I keep thinking is that there is another tumour somewhere, or that it has spread, or perhaps a new cancer has been found somewhere else in my body, I don't know what else to think. I have been so brave all the way through, I've dealt with so much but what if it's all been for nothing? What if I have to go through it all again? What if I'm not so lucky second time around? I've been making plans for a holiday and deciding how I will celebrate being cancer free, now I think I've been to cocky about it and should have waited until I knew for sure. I don't think I could face it all again. Just when my life seemed to be getting back on track and I'm beginning to feel better, I just want to get back to normal.

It was good to hear back from all of you.

Irene - you are being very brave in sipping coffee and tasting things. I stayed well clear of everything and completely relied on my tube for about 6 weeks after treatment ended. It sounds as if you are having bad luck like me with your tube! I used to worry about it splitting, how did they rectify it? What a pain in the backside for you! It also sounds as if you've had a very hard time with the sickness, you poor thing and I suppose it hasn't helped much with trying to maintain your weight. How are you finding your phlegm/saliva? I was constantly spitting for about three weeks after treatment ended! I hope you've seen the end of the sickness now and can concentrate on feeling better.

Simon - how did your appointment go on Wednesday? Any joy with finding out much more about your swollen nodes? Your diet seems to be moving on well. I wouldn't have considered breadcrumbs as I would have thought that would be quite rough on your throat but good to hear you are managing such things. I have been managing sloppy ready brek, yoghurts (the Muller fruit corner ones)  custard, soup, ice cream and jelly with double pouring cream. I've also been having milky coffees too and cups of tea. All seems to be going down very well, the only thing stopping me from moving on to more solid foods is my extremely dry throat. It's also still fairly painful. You are right in comparing ourselves to a few weeks ago rather than days, I felt my improvement is slow but when I look at it like that, there was no way I would have been trying all of these different things a few weeks ago.

Jo - wow you are returning to work! Good for you! That's a big step forward, I hope it goes smoothly and you don't over do it. Your diet sounds good, similar to mine although it's very difficult trying to put on weight isn't it. Most people would love to lose a few pounds whilst we have free rein to gain a fair few. Be careful what you wish for - is what I say to my friends when they complain about their weight!! The very best of luck to you with your next scans, I hope it can all be as well as expected. You sound very light hearted, even though the news must have been a shock.  I hope that returning to work will help keep you focused and positive until April.

So now I face four days of worry and anxiety. Not really sure what to do with myself. How could the treatment not have worked? They were sure they got it all during the operation. It can only mean that there is something new and I'm not convinced that the oncologist knows nothing about the scan yet, I just don't think he wanted to say anything over the phone. This takes me right back to when I first found out, the waiting was truly the worst bit. I will of course update you all when I can.

Speak soon xx

Hi Nicola,

I really feel for you! I know saying "Don't worry" is pointless.

Try to keep your mind occupied, but don't wear yourself out physically! I'm sure your little girl will offer a welcome distraction!

Try not to let your thoughts run away with you (easier said than done I know! It's one of the reasons I'm going back to work!)

Please let us know how you get on.

Sending you a big, supportive hug, Jo xx

p.s. Hugs to Simon, Deb and Irene too! xx

Oh Nicola,

I am so gutted about your news. You are making such excellent progress and I can imagine how you must be feeling. I won't waste time by telling you not to worry - I know that that is inevitable. What I would say is that scans tend to give a very rough view - of course I'm not an expert and I'm not qualified to give an informed opinion, but I wouldn't mind betting that scans set off many false alarms and that the ratio of occasions when they raise a concern that is later found to be non-consequential is high. You wouldn't have been having a scan if you weren't progressing down this particular road - the fact that you had a scan put you in the frame for a result that MAY or MAY NOT lead to the discovery of something significant. I think that the chances are that once further investigation is carried out it will likely be that whatever has caused the concern turns out to be nothing too serious. I genuinely believe this. I know that you going to fret and worry but please do try to keep an open mind.

Leading on from the above, if by chance it does turn out to be something serious then at least it will have been caught very early which has to be good news.

I will be keeping fingers, toes and everything else crossed for you.

You asked about my consultation on Wednesday - well the consultant examined my groin lymph nodes and said that they were swollen to around 1cm which is a borderline for concern but by no means a certain indicator of something serious (size does matter in this instance it seems). The fact that the swellings are accompanied by night-sweats and itching does mean that further investigation is needed. Additionally, my latest blood test shows that my white and red cell counts have gone low again which is another factor that indicates something is amiss. I pressed him about the chances of this being lymphoma and he wouldn't be drawn either way except to say that lymphoma is very rare. I told him that tongue cancer is rare yet I managed to get that without too much trouble. I am now to have a bone marrow biopsy next Thursday with a return visit to the consultant the following Wednesday to get the result. If matters are still inconclusive after that then I am to have a PET scan. I'm trying to keep an open mind, as must you, Nicola!

Please do try to have a low-stress weekend. We're all thinking of you and we're all here for you. Please promise to update here as soon as there is any news.

Take care and please, please keep us posted.

Simon XX         

Hi

Nicola and Simon - this cancer roller coaster is a rocky old ride isn't it? I remember one of my ovaries "lit up" on one scan but when they did further investigations it was nothing fortunately. It is so scarey though.

Please try and stay positive both of you.

Debbie

Thank you Jo, Simon & Debbie. I appreciate your replies and your kind words. I suppose we are in similar situations (or have been) in that we are having to wait for further news. It's such a worrying time and I really don't think the consultants etc really understand how worrying it is.

Debbie - following your MRI scan, were you rushed back in for a discussion of the results about their findings? I'm convinced mine has picked up something bad due to the timescales involved or they could have just told me at my next scheduled appointment.

Simon, more waiting around for you then too. It would indeed be very very bad luck to have a second cancer after all you have been through, that's how I'm trying to look at it for me too. I hope your bone marrow biopsy goes well this week and I'm glad they are looking into this for you.

Jo - I suppose you know only too well how the waiting game feels and I admire you for going back to work.

Back to my rubbish weekend of worrying. Speak soon xx