Hi Everyone,
Well the scan feedback was mixed. No secondaries anywhere which is great news BUT the little flakes and nodules that they found in my body cavity at the time of original diagnoses appear to be be 'waking up'. If you have been following my story since the outset you'll remember that it was these little 'nodules' that put a halt to the curative surgery in the early days.
The 'waking up' was shown by water around my liver and a funny shaped kidney. The oncologist reckons that if he zaps them early enough we could buy me some time. I can't have anymore radiotherapy so it is the chemo route. I think he would like to have started straight away but I'm too weak at present. I have the task of putting on some weight, and getting stronger before March 22nd when four rounds (four weeks each) of chemo begins. This time I'm not having Oxealpatin. This is the blighter that gave me such bad side effects last time. This time round I'm having Irinotecan (Campto) which I'm assured is as effective but kinder as far as side effects are concerned.
So...chemo.... mmmm and I had just got enough hair to spike again. Never mind! The wonderful truth that I was given 9 months of life initially and I am now in month 26! Amen.
On the food front the feeding tube is back in place and I'm getting as much 'gloop' down me as I can stand. I'm also managing to eat some things normally, swallowing is OK and the anti-nausea medication seems to be helping in the battle to keep grub down.
I'm keeping busy which really helps. People keep lecturing me on 'taking it easy' but honestly I'd go mad! I've done a mini makeover of Carys' bedroom and I'm off on a stag 'do' with some mates tonight. I shall trundle around with my feeding rucksack looking vulnerable and delicate! Perhaps I'll manage a Guinness or two - it is 'good for you' after all!
Thanks for dropping by.
Luv
Dave xx
Saturday, February 27, 2010
Tuesday, February 23, 2010
More 'Not So Good' News - Still Smiling!
Hi Guys,
Well; CenterParcs was a challenge! I really wasn't too well and it all started with me honking up the nasal feeding tube (again) on the Monday evening and deciding thereafter not to bother for the duration of the holiday. Carys picked up a sickness and squits bug which I caught and then I ran out of painkiller and had to scout every chemist in Brandon & Thetford to find a pharmacist who carries the particular pill. Not an easy task. Needless to say I lost some weight and became very well acquainted with the enamel bowl in our villa. I'm afraid I still puke up most of what I try to eat. Now having said all that between us we enjoyed: badminton, table tennis, archery, fencing, quad bikes, go carts, spa pampering, jewelry making, laser shooting and loads of swimming. We also watch lots of Olympics and some great films including 'Up' and 'The Hurt Locker'. Despite the health issues we really did have a great time; thanks to Florence for organising it for us.
Today was CT scan day and I thought everything would go pretty much to plan but No! Because they use a special dye that is injected into your arm during the scan you have to have a sit down for 10 minutes afterwards before they'll let you go. I've never had any feedback before prior to the consultant's feedback meeting (normally a few days later). Today a nervous looking doctor appeared to tell me that I had a number of blood clots on my lungs which would need instant treatment. This was a real shock as I have had no symptoms at all, no cough, no chest pain, no phlegm. So I now have to inject myself in my much depleted belly (or Florence will) with Tinzaparin Sodium every morning for evermore (no respite for good behaviour). AMEN.
Also... my excellent upper GI specialist nurse told me that there was a lot of fluid around my stomach which would indicate further 'change'; this is normally not good news. We get the full feedback on Thursday so I'll let you know what's said.
Meanwhile _ I have to report to the Endoscopy Dept to have my nasal feeding tube re-fitted (again) so I can get some calories and nutrition down me again. I'm weighing in at a scrawny 10.10lb! In the afternoon I'm getting a visit from my Macmillan Community Nurse.
As you can see it is all go at this end. Please keep praying for me!
Also to the believers out there could you pray for a young mum called Anthea who is suffering from post-natal depression and really needs to Lord's help. If you're not a believer then send some positive 'vibes' in her direction (she lives in Northampton); she's really struggling and needs to get well soon.
Think that's all for now - I'll update again on Thursday after the consultant's meeting and let you know what's said.
Luv Dave xx
Well; CenterParcs was a challenge! I really wasn't too well and it all started with me honking up the nasal feeding tube (again) on the Monday evening and deciding thereafter not to bother for the duration of the holiday. Carys picked up a sickness and squits bug which I caught and then I ran out of painkiller and had to scout every chemist in Brandon & Thetford to find a pharmacist who carries the particular pill. Not an easy task. Needless to say I lost some weight and became very well acquainted with the enamel bowl in our villa. I'm afraid I still puke up most of what I try to eat. Now having said all that between us we enjoyed: badminton, table tennis, archery, fencing, quad bikes, go carts, spa pampering, jewelry making, laser shooting and loads of swimming. We also watch lots of Olympics and some great films including 'Up' and 'The Hurt Locker'. Despite the health issues we really did have a great time; thanks to Florence for organising it for us.
Today was CT scan day and I thought everything would go pretty much to plan but No! Because they use a special dye that is injected into your arm during the scan you have to have a sit down for 10 minutes afterwards before they'll let you go. I've never had any feedback before prior to the consultant's feedback meeting (normally a few days later). Today a nervous looking doctor appeared to tell me that I had a number of blood clots on my lungs which would need instant treatment. This was a real shock as I have had no symptoms at all, no cough, no chest pain, no phlegm. So I now have to inject myself in my much depleted belly (or Florence will) with Tinzaparin Sodium every morning for evermore (no respite for good behaviour). AMEN.
Also... my excellent upper GI specialist nurse told me that there was a lot of fluid around my stomach which would indicate further 'change'; this is normally not good news. We get the full feedback on Thursday so I'll let you know what's said.
Meanwhile _ I have to report to the Endoscopy Dept to have my nasal feeding tube re-fitted (again) so I can get some calories and nutrition down me again. I'm weighing in at a scrawny 10.10lb! In the afternoon I'm getting a visit from my Macmillan Community Nurse.
As you can see it is all go at this end. Please keep praying for me!
Also to the believers out there could you pray for a young mum called Anthea who is suffering from post-natal depression and really needs to Lord's help. If you're not a believer then send some positive 'vibes' in her direction (she lives in Northampton); she's really struggling and needs to get well soon.
Think that's all for now - I'll update again on Thursday after the consultant's meeting and let you know what's said.
Luv Dave xx
Sunday, February 14, 2010
Quite A Week
Hi All,
Had quite a week! Lots of trips to hospital to get my nose feeding tube re-fitted as everytime I honk it pops out to say hello! To be honest I've just started to put it back myself now (don't tell anyone). I really want to avoid having a 'peg' fitted which is a valve in your tummy and obviously not too pleasant. Eating normally still hurts very much though is just about possible. The pain relief is working well and keeping me comfortable - just.
My next scan is on the 22nd with feedback on the 25th. Let's hope and pray that there is no further spread or nasty secondaries making an appearance anywhere.
We are off to CenterParcs tomorrow for a Monday to Monday holiday which should be fun. I'm not allowed to swim but will happily spectate with a good book and my feeding pump keeping my gloop levels topped up.
There is little or no internet connection at CenterParcs so I'll probably not be able to blog until we get back.
Thanks for checking in, keep praying!
Love
Dave
Had quite a week! Lots of trips to hospital to get my nose feeding tube re-fitted as everytime I honk it pops out to say hello! To be honest I've just started to put it back myself now (don't tell anyone). I really want to avoid having a 'peg' fitted which is a valve in your tummy and obviously not too pleasant. Eating normally still hurts very much though is just about possible. The pain relief is working well and keeping me comfortable - just.
My next scan is on the 22nd with feedback on the 25th. Let's hope and pray that there is no further spread or nasty secondaries making an appearance anywhere.
We are off to CenterParcs tomorrow for a Monday to Monday holiday which should be fun. I'm not allowed to swim but will happily spectate with a good book and my feeding pump keeping my gloop levels topped up.
There is little or no internet connection at CenterParcs so I'll probably not be able to blog until we get back.
Thanks for checking in, keep praying!
Love
Dave
Sunday, February 7, 2010
Sunday Morning
Hi All,
A Sunday morning update.
Yesterday was a lot less eventful than Friday; no more emergency tube replacement trips to the hospital needed. I'm starting to get into a routine with the feeding. I start at 5.00 pm and then overnight to 8.00 am; 15 hours a day of glorious nourishing gloop. They can supply me with a ruck sack for 'food on the go'.. not sure that it wouldn't look a little 'sad' but what's new eh?
Seemed to have got the pain sorted thanks to Fentanyl which I'm assured is not addictive but really hits the spot. It does have some side effects including itching, sweating and twitching - lovely!
Just wanted to thank all those who visited me in hospital so thanks to:
A Sunday morning update.
Yesterday was a lot less eventful than Friday; no more emergency tube replacement trips to the hospital needed. I'm starting to get into a routine with the feeding. I start at 5.00 pm and then overnight to 8.00 am; 15 hours a day of glorious nourishing gloop. They can supply me with a ruck sack for 'food on the go'.. not sure that it wouldn't look a little 'sad' but what's new eh?
Seemed to have got the pain sorted thanks to Fentanyl which I'm assured is not addictive but really hits the spot. It does have some side effects including itching, sweating and twitching - lovely!
Just wanted to thank all those who visited me in hospital so thanks to:
- My long-suffering wife and kids Carys, James & Chloe.
- My mum and dad - all the way from Derby.
- Amy & James Fokkens (my lovely oldest daughter and her hubbie).
- Nick Hearn (thanks for the mags mate).
- Stuart Simms and the Goodson clan (David, Suzy and Ben) from Church.
- Our minister - Rev Graham Miles.
- My brill mates (Da Boyz) David B & Adrian F from sunny Leicestershire (you keep me sane(ish).
Actually getting excited about going out today. Only to IKEA in MK but a trip none the less. We are looking a kitchens as ours is looking a little 'tired' these days.
Think that's all for now.
Best wishes from Gloop Central.
Dave xx
Friday, February 5, 2010
Home After 10 'Interesting Days'
Hi Everyone,
I'm home again now after 10 nights in the Elizabeth Ward at Bedford South Wing hospital. I know that Teresa has kept you updated but here's the status of things at present:
I can swallow but it hurts very much as it hits my stomach. I've got to be tube fed (through the nose) for the next two weeks. This means 15 hours a day attached to a pump being dripped 'gloop'. Can't taste it because it goes straight into my tummy. It looks like evaporated milk and supposedly the most nutritionally balance food on the planet! Yum!
The pain on swallowing appears to be from the radiotherapy burning and virus in my stomach. I'm on antiviral drugs which should work. They've also got the pain sorted with patches for the background pain and a pill for the sudden 'breakthrough' pain I experience in the evenings and early morning.
The ward experience was interesting. Shared my bay with a lot of older guys some of whom were suffering form dementia. It's sad really as these blokes were really confused, didn't know where they were, crying for their mums, screaming all night. Needless to say it was great to get back to the peace of the marital bed last night.
Unfortunately I had to go back this morning because no sooner had I set everything up last night for my feed than I was sick and out popped the tube! So, back to South Wing this morning for a new tube and quick x ray to ensure it was in the right place. Any how back home now watching dodgy day time TV and being fed at last!
Not quite sure what happens next but I obviously need to be able to eat and overcome (or at least control) the pain. I have another CT scan booked in February. The endoscopy last week showed the tumour to be at worst 'dormant' and at best shrinking!
Thanks to all those who visited me - it helped no end to see friendly faces. Thanks too to all the hard working NHS staff on the Elizabeth Ward - heroes and angels all.
Thanks for checking in on me; I'll keep you updated.
Love Dave xxxxxxxxxxxxxx
Tuesday, February 2, 2010
Quick update
Morning Folks
Quick update today...had the results of the biopsy yesterday which confirmed a virus and David was started on anitviral medication last night which he needs to be on for 48 hrs. They have also (finally!) sorted out his pain relief and he is on morphine patches which are doing the trick. They have also changed the feed to a more nutritious one so it should get his energy levels up.
He is feeling much better today and is hoping to be able to try something to eat tomorrow which is great news. They are going to re-assess him on Thursday with hopefully a view to letting him out maybe Friday if all is looking good (please pray that he gets out before the weekend!!!)
All good news and thanks again for all your support! Sorry it's a brief one today...when he gets out David has loads to share with you about his experiences in Elizabeth ward!
signing off...a madly busy Florence xx
Quick update today...had the results of the biopsy yesterday which confirmed a virus and David was started on anitviral medication last night which he needs to be on for 48 hrs. They have also (finally!) sorted out his pain relief and he is on morphine patches which are doing the trick. They have also changed the feed to a more nutritious one so it should get his energy levels up.
He is feeling much better today and is hoping to be able to try something to eat tomorrow which is great news. They are going to re-assess him on Thursday with hopefully a view to letting him out maybe Friday if all is looking good (please pray that he gets out before the weekend!!!)
All good news and thanks again for all your support! Sorry it's a brief one today...when he gets out David has loads to share with you about his experiences in Elizabeth ward!
signing off...a madly busy Florence xx
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