Wednesday, 14 August 2013
Check-up and scan results
And the PEG is out, which is a great relief.
Tuesday, 13 August 2013
Recovery Week 18
Saturday, 27 July 2013
Recovery week 15 - not quite as good a week
The ulcer seems to be slowly healing now and this morning is the first time in a week that I have had breakfast without any significant pain. My gums on the same side also became incredible sensitive by the middle of the week, I think because of another couple of smaller ulcers on the roof of my mouth, by the gum line - hard to tell, as it's not easy to see. Hence brushing my teeth can leave me with my eyes watering!
I've gone back to using the homemade bicarb/salt mouthwash, which seems to have helped the healing along. Perhaps I shouldn't have stopped using it in the first place!
Hopefully the relative lack of pain when brushing and eating this morning is a sign that things are improving again.
2.5 weeks to go until the PEG comes out though, which I am really looking forward to. So ulcers or not, I am still eating! The PEG is now a constant annoyance, as it no longer needed and just gets in the way and provides a constant reminder of what has happened this year (not that I forget very often!).
Also, I had my PET scan last Friday, so it has now been a week and no call from the hospital, which I am hoping means they found nothing and won't be calling next week - fingers crossed. Not sure what the nurse did with the cannula, the bruise on my arm is worse that I remember having before.
Wednesday, 17 July 2013
Recovery Week 14
So no more feeding pump, and I reckon I'll be fine to get the PEG removed mid-August when I go back to the hospital - I'm already getting annoyed with it, now I'm not using it, and it hasn't been a week yet!
PET scan Friday, fingers crossed that I won't then hear from the hospital prior to mid-August...
Saturday, 13 July 2013
End of week 13
Wednesday, 3 July 2013
Recovery Week 12
Wednesday, 26 June 2013
Recovery Week 11
I'm working full time now, from home in the morning and into the office at lunch time. This week will be my first going to the office every day.
And my taste buds seem to be recovering well now allowing me to taste most things properly - still a bit salty at times, and sweet is nowhere near as sweet as it used to be, but I'm rarely finding anything that I can't eat due to taste. Even able to have a little Guinness now and then :)
Monday, 17 June 2013
Recovery Week 10
I have actually been feeling more tired this last week or so, but at times it all becomes a blur such that it is hard to tell if I am better or worse! My throat is getting very dry at night, which is waking me very early, so that might be contributing to the tiredness.
Today I had a breakthrough as I was able to eat a whole cheese sandwich, which was an improvement on much more moist foods (or occasional tiny bits of drier food) not to mention a psychological victory, spurring me on to go our for a walk for 25 mins at the end of the day, leaving me feel somewhat refreshed.
Another couple of weeks and I'm back at the hospital for a checkup, so I have to make sure I'm eating well and my weight is up. The next big milestone is eating enough to sustain my weight, after which I'll be allowed to get the PEG removed, but I think I'm still a few weeks off (or more).
Sunday, 2 June 2013
End of week 7 of recovery
I finished the antibiotics yesterday, and am now hoping that the improvements continue and I don't go backwards. Overall my mouth and throat are drying up as they heal, which is as expected, though it does seem to leave me coughing a lot more (though not coughing much up, just coughing - I can feel how dry my throat is and I think that's the cause).
So yesterday I ate lunch of potatoes, carrots and a (very) little bit of sausage - the portion was probably smaller than Daniel's, but it's a start. And then an inch square of lasagne and garlic bread (sans crusts) for dinner.
Having worked most of the week (mainly from home, but a few hours in the office!) I'm a little worn out, but not overly so.
I'm crossing my fingers that the general direction remains the same in the coming week.
Sunday, 26 May 2013
Back to hospital
Thursday, 23 May 2013
Recovery Week 6
So, yesterday I managed three spoons of Ready Brek (tastes like salted cardboard) and this morning I had three spoons of crushed melon (tastes like petrol). Yum!
Monday, 13 May 2013
Recovery, 4 weeks done
Thursday, 2 May 2013
Recovery week 3
It is quite frustrating with such slow progress, but I am hoping I can still drink water tomorrow and if I can I will take it as an indication that things are really improving. Fingers crossed I might be able to start eating a little soon. My throat is very dry now, which is actually an incentive to drink.
Friday, 26 April 2013
Recovery week 2
Still not able to eat anything and whilst I make myself have some water by mouth each day, it is far from easy. However I have to relearn how to swallow so a little each day is better than nothing. I am desperate to eat some food and down a cool glass of water so it can't get better soon enough.
I am still quite tired out, not able to do very much, but feeling better so starting to get bored!
Friday, 19 April 2013
Home again
My mouth and throat are very sore still, possibly more so than ever and the mucus tends to make me nauseous so managing keeping feed down is my main challenge.
Overall though I feel a lot better. Let's hope it continues.
Wednesday, 17 April 2013
Back in hospital :(
Friday, 12 April 2013
Done!
Attached is a picture of my mask, which I will eventually take great pleasure in destroying.
Wednesday, 10 April 2013
Almost there
This week is proving quite challenging. I can rarely clear the mucus in my throat and if I try too hard I tend to throw up, which isn't very nice. So mostly I try to tolerate it but it makes sleeping very hard. They lent me a nebuliser but I am not convinced it helps much.
To add to the problems my PEG doesn't seem overly happy after it was changed last week. I am seeing the nurse tomorrow in case there is an infection :(
The doctor also warned that next week the cumulative effects of the whole treatment will hit me and I will very likely feel even worse for a week, though things would then start to improve. Fingers crossed it's not too bad. He confirmed that I was handling the treatment well, my blood counts were all good, and I was fine for my final chemo (which people often skip if they are struggling)
Still, it *is* the final week, which is a good thing, and I can't wait until Friday when I have had the last treatment and I can come home and start working on recovery.
Saturday, 6 April 2013
Week 5 done
Week 5 is finally over. Not a good week, but at least it is done with.
I actually managed to get a bit of sleep last night, so I feel marginally better today. Mucus is bad though, so it may be a three boxes of tissues day. The main challenge is getting a litre or more of water drunk - it takes me hours to drink a small glass without coughing it up. Oh well, nice to have a goal to work towards!
No doubt next week will be a joy.
Time for a naff film...
Monday, 1 April 2013
Week 5 begins
No treatment today due to the bank holiday. However, the past few days have been a challenge. Looks like the utter exhaustion that was promised has arrived, leaving me wiped out after walking from one room to the next. I am now genuinely a couch potato, and very poor company!
My throat is not too sore today, but it is full of 'stuff' I just can't clear, which is as disgusting as it sounds. During the day it is manageable, but at night it wakes me up once an hour coughing and retching. I can happily say I am now desperate for the next two weeks to pass and for things to start getting better!
Thursday, 28 March 2013
Week 4 done!
I am pretty tired now all the time, and seem to feel the cold a lot more than I usually do. Some nights I am awake much of the night coughing to try to clear me throat. I used a whole box of tissue last night! No doubt this isn't helping with the tiredness.
Chemo today did it's usual trick of hydrating me nicely though by now my throat is getting extremely dry and sore (I had thought it couldn't get worse but there you go)
Saturday, 23 March 2013
Half way
We had our training on how to use the food pump yesterday and I'm now on continuous feed, which takes about 10 hours, though the pump is portable so it isn't overly inconvenient. Having more calories is making me feel a whole lot better, as is not trying to force down food through a throat that is just too sore. I can't begin to imagine how people manage through this without the PEG (much as I hate the thing).
My two day's of anti-sickness (post chemo) is almost over again, which is a relief as I suffer from hiccups as a side effect of the Zofran. Having hiccups for two days a week seems a cruel and unnecessary additional thing to deal with.
I'm now eager to get another week out of the way.
Wednesday, 20 March 2013
Week 3
A bigger problem is the cough I get on and off all night, which for the past two nights has stopped me sleeping much. Not sure if there's much that can be done, but will ask the doctors again today. I am very tired, though, so hope it is just a phase and that it passes.
Friday, 15 March 2013
Chemo 2/6, end of week 2
Had a few days of nausea this week, only mild but most of the time and it put me off my food, so I had to force myself to eat. Eating actually made it better, so it was worth it.
Chemo day was relatively pleasant - I think the constant hydration and the anti-sickness drugs made me feel better than I had all week. I got some tablets to calm my stomach, and they told me to take the mild anti-sickness meds all week if I felt the need (they could let me take the stronger ones too, but the side-effects aren't attractive so I am declining for now). I felt well enough to have a mild curry last night, and found it moderately enjoyable (though it did taste a bit odd).
I managed to get a bit of sleep, though I was awake at 5am. I managed to stay in bed dozing and then got up at 6am with Daniel. Sat working, webbing and listening to the radio since then, as I don't really fancy lounging on the sofa. Sadly today my throat is a little sore for the first time so I guess that's started. Two weeks without any real pain is a good run, and it isn't so bad that eating it too hard yet. Will see what the next few days hold.
I've gotten to know a few of the other guys (it seems to be mostly men) who are on similar treatment programs at the hospital. One of them is a week ahead of me, so is a handy guide of what might be coming - he is using the PEG to feed already, and finding it OK. I'll see how quickly eating gets unbearable, but will try to hold out for another week or two (though I'm realistic and know I might have to revise that plan).
The challenge that is lunch next, for which I might just take the easy option of scrambled eggs :)
Saturday, 9 March 2013
One week done
The slight nausea is slowly subsiding though it is taking an effort to be interested in food. I can see why, once the sense of taste starts to go, people just don't want to eat. Mine is still mostly intact and my appetite is waning.
Whilst I am pretty tired and my mouth is drier than usual I don't feel too bad. It will get worse, I know!
So a couple of days off and then back to hospital on Monday morning to review my progress (and have another dose of radio of course).
I was very touched to receive an envelope with what looks like one origami paper crane per Amadeus employee, which I am reliably informed is a variation on a Japanese custom where 1000 paper cranes are given to someone who is ill or otherwise in difficulty. Daniel was very impressed too :-)
Thursday, 7 March 2013
Chemotherapy 1/6
I have a huge stack of anti-sickness meds to take tonight until Sunday, but they don't anticipate any problems.
We also had to get a proper thermometer as any infection (and associated rise in temperature) has to be spotted, and generally leads to immediate admission to hospital for IV antibiotics. Fingers crossed we don't need it.
Feeling OK, hopefully won't feel too sick, one more radio this week and week 1 is over :)
Monday, 4 March 2013
Radiotherapy 1/30
Wednesday, 27 February 2013
Home
A few days of recovery should do it!
Amusingly I just re-read my posts from the hospital, and realized that I repeated myself. They said the sedation would cause some short term memory loss, which was supposed to make me forget the operation. Instead it seems to have made me forget the time shortly afterwards. Oh well.
Tuesday, 26 February 2013
Proud owner of a PEG
Moving around is very painful, especially getting up off the bed. I have managed to drink water and eat a baked potato, and had some water through it so all seems well.
Once it has healed it doesn't seem like it will be too obtrusive. I still expect to celebrate the day it finally comes out though!
Sadly the gentleman in the corner seems to be gearing up for another night of shouting at the nurses so it may not be a very restful one again.
Pain in the peggin tummy
Monday, 25 February 2013
Pegtastic
Pay TV to keep me company, not so bad. Shame about the cucumber sandwich for dinner, I may have to head to the food court shortly.
PEG countdown - 1 day to go
Monday, 18 February 2013
Phantom of the Opera mask, scan & schedule
A few days prior to the appointment, we got a letter about the PEG insertion, scheduled for the 26th (hospital stay from the 25th - 27th).
On arrival at the oncology department, we were somewhat surprised to have my name read out before our appointment time! I went to be weighed (which showed that all our attempts to fatten me up had come to naught so far), then had an unpleasant 'cannot find the vein' cannula experience (it was a bit cold, so my veins were hiding, so not their fault). I then lay on a bench in front of the CT scanner, and they laid the warm, wet mesh of the immobilization mask on my face and proceeded to mold it. It was quite pleasant, like a nice facial massage, though as it dried it did tighten up - not much chance of me moving in that, that's for sure. They then injected me with some 'contrast' and I had my CT scan, which is done in the mask so they have a scan of me in the fixed position which will be used for the radiotherapy.
We were given my treatment schedule, which starts on Monday 4th April (the week after the PEG surgery) and we went home.
As of today, I have a week with no hospital visits, back at work.
And I have a Ukuleke I've bought so I can try to learn to play it. Plus a growing pile of DVD box sets and films. I'm almost looking forward to it (er, not really, though I do kinda want to get on with it now).
Follow on treatment - the plan!
What was a bit upsetting was the need to have a PEG feeding tube installed - this is a small tube inserted through the abdomen directly into the stomach, which allows direct feeding of people who are unable to eat or drink. Addenbrookes install these for anyone undergoing radiotherapy on the throat, as hardly anyone manages to eat properly throughout the treatment, and maintaining my weight will be very important not just from a general health point of view, but also to ensure that the treatment remains correctly calibrated. Whilst I know it is the right thing to do, and rationally I know I'll be fine once it's in and I get used to it, the thought of it makes me pretty apprehensive.
Once we'd calmed down we were sent to the dental department to have my teeth assessed. Apparently any dodgy teeth have to be removed due to the risk of dental complications (which can then cause the jaw bone to die and shed through the skin!). Sadly we just missed the x-ray department before they went to lunch, so we had to wait an hour for them to get back, then quite a lot longer for our notes to arrive and our slot to come along. The first step was the x-ray, for which I stood with my head on a little ledge whilst a small x-ray machine rotated around me. I then went to wait some more, and was eventually called through to talk to a very nice consultant who told me I had excellent dentition and hence had no work to be done. He prescribed me with a lifetime supply of extra-strong toothpaste and told me to use it in perpetuity. What a relief, one fewer thing to deal with :)
We went home, and awaited the next appointment. We had been told I would have an immobility mask made, a CT scan done and the treatment schedule provided over the coming few weeks, along with the dreaded PEG insertion, after which treatment would start and run for 6 weeks, after which I would take anything from a few weeks to a few months to recover somewhat.
So home we went, emotionally drained and somewhat apprehensive, but still happy that the prognosis remained good so it would all be worth it.
Initial treatment
The consultant confirmed that the PET scan had found some 'activity' in the left tonsil, which was where they had thought it might be based on the visual examination previously - no other areas showed signs of anything, which was something of a relief. The first step was to get the tonsils removed and checked out, and to do a panendoscopy to check there were no other signs in the throat of any problems. Eager to get this done, the consultant got us scheduled for the following day, much to our surprise. Hence, we spent the rest of the day in hospital doing the pre-surgery work such as blood tests. Very tiresome, but as the prognosis was still good, we were remaining positive.
The next day I waited much of the day, talking to the other patients, and watching them leave for surgery, then return. I finally went in to surgery, and awoke feeling pretty good in recovery (as is often the case, with the stuff they pump into you during operations). Once I was breathing well enough and a little more awake, I was returned to the ward. I recovered enough to force down some sandwiches and biscuits, though my throat was very sore.
I moved to an overnight ward, which was lovely and quiet (only one other person in my bay of 6 beds) and had an OK night, though I did have to keep up the painkiller dosage.
I went home the next day, painkillers in hand, and spend the next week and a bit in the most painful discomfort I've so far experienced. They told me the recovery for an adult tonsillectomy was one of the most painful I would ever go through, and they were not wrong. On the plus side, painkillers and determined eating of rough bulky (but well chewed!) food, which the hospital had suggested, worked well and I was 80% recovered a week and a half later.
Next we had to wait another week or so to return to the hospital to discuss the results of the tests on my tonsils and the specifics of the follow on treatment...
Diagnosis
Just before Christmas 2012 I went to the doctors about stomach pains, which both he and I think are IBS. I also mentioned as an aside that I had recently noticed a node in my neck that was swollen, and had been for a good few weeks. The doctor was most concerned about the swollen lymph node, so he sent me to the ENT clinic at Addenbrookes in Cambridge, who examined me and then scheduled me for a biopsy.
The results didn't come back until the New Year, but it turned out there were squamous cells in the lymph node, which they told me would have come from somewhere in the mouth or throat. An exam let to a CT scan and a PET scan, which are similar experiences and not particularly stressful. The scans came back indicating there was probably something in the left tonsil, but nothing big enough to be picked up anywhere else.
All very upsetting of course but the consultant was confident that with surgery and treatment I should be fine.
So, on to treatment...


