Been in Cornwall now for 8 days. Spend the first 4 with Adam ,Gemma, Duncan, Cardice and the children in Newquay. Whilst we were there managed to catch up with my lovely friend Jaki who now lives there.
We carried our journey on to Cabris Bay to stay with Alyson and Neil. Alyson is my old RAF friend I have now been firnds with for 30+ years. They live in a beautiful house with a perfect sea view. What a lovely time this has been, we have seen so many lovely beaches I can't believe are in the UK and even been to Lands end and dressed up as pirates! The pirates then moved on to Porthmeor and recreated the Skeggy picture fro 30 years ago (whe we were in the RAF)drinking wine from sandcastle buckets through straws lol.
I have to say though that I am now shattered and am in need of a rest!
Had a phone call whilst we were here from Xray dept telling me I have to have a scan on Friday to check the treatment is working before I see the onchologist in order for the treatment I am on to continue. I will only have been taking it for 7 weeks by then so I hope that it is showing that it is working as if not I have to revert to traditional chemo. I don't know whether I will be able to stand all the side effects or if it it worth it to have more time but not be able to enjoy it. I don't feel too good now - well not today anyway.
Tuesday 31 May 2011
Sunday 22 May 2011
Sunday 22nd May
2 months now since operation and diagnosis. Feel alot better, but still can't do stairs like I used to able to without getting out of breath, It's hard to get get breath back too when I get to the top as I can't get a deep breath in. It must be the operation though as I was OK before, it is quite frightening though, when will it get back to normal.
Felt a bit more enthusiastic today about planning things. I've found it hard to get enthusiastic about anything I just feel flat. I wat that enthusiasm back.
Paul and I are still in limbo with things. We still don't know where the next penny is coming from and his van broke down again on Friday, the mechanic doesn't know what's wrong with it. Parts have been replaced (at a cost!) but it still has the same problem.
We have some good friends who are trying to help us get this extension finished or at least get the downstairs bit done, however it needs money. I am so not used to not being able to go to work it makes me feel helpless and that's one thing I have never been, I need to earn money.
We are going away tomorrow though for a weeks break, I think Paul needs it more than me, it will give us chance to recharge our batteries as It's all ben a bit hectic of late. A few days by the sea seeing friends who I've not seen for ages will do us the world of good.
Felt a bit more enthusiastic today about planning things. I've found it hard to get enthusiastic about anything I just feel flat. I wat that enthusiasm back.
Paul and I are still in limbo with things. We still don't know where the next penny is coming from and his van broke down again on Friday, the mechanic doesn't know what's wrong with it. Parts have been replaced (at a cost!) but it still has the same problem.
We have some good friends who are trying to help us get this extension finished or at least get the downstairs bit done, however it needs money. I am so not used to not being able to go to work it makes me feel helpless and that's one thing I have never been, I need to earn money.
We are going away tomorrow though for a weeks break, I think Paul needs it more than me, it will give us chance to recharge our batteries as It's all ben a bit hectic of late. A few days by the sea seeing friends who I've not seen for ages will do us the world of good.
Thursday 19 May 2011
Thursday 19th May
Another milestone reached today, I had a bath without the bath lift! lol.
Appointments again this week, bloods Monday, chemo Tuesday and clinical psychology today, bloods must have been ok as I got to carry on with the gefitinib (chemo). I am now extremely spotty, and it's quite painful. I look in the mirror in the morning to find at least 10 new ones! I can just about cover them up with make up but it is getting worse, the 'cover up' is becoming quite an art. I here that its a good thing though, it means the treatment could be working, won't know for sure until I get scanned again July/august. Fingers and everything else crossed.
I still can't believe it though..... I'm still trying to pretend it isn't happening- just keep getting reminders every time I go to the hospital, that makes me depressed- I just want to get back to how I was before the surgery, I think I'm getting there :))
I registered for the race for life this week with my sisters and daughter. My sister Sue told our story on the cancer research page and they now want to use us/it as an inspirational story to promote the event, were going to be in the paper!!! I hope they have photo shop! lol
Appointments again this week, bloods Monday, chemo Tuesday and clinical psychology today, bloods must have been ok as I got to carry on with the gefitinib (chemo). I am now extremely spotty, and it's quite painful. I look in the mirror in the morning to find at least 10 new ones! I can just about cover them up with make up but it is getting worse, the 'cover up' is becoming quite an art. I here that its a good thing though, it means the treatment could be working, won't know for sure until I get scanned again July/august. Fingers and everything else crossed.
I still can't believe it though..... I'm still trying to pretend it isn't happening- just keep getting reminders every time I go to the hospital, that makes me depressed- I just want to get back to how I was before the surgery, I think I'm getting there :))
I registered for the race for life this week with my sisters and daughter. My sister Sue told our story on the cancer research page and they now want to use us/it as an inspirational story to promote the event, were going to be in the paper!!! I hope they have photo shop! lol
Sunday 15 May 2011
Sunday 15th May
Today, well for the last week I have looked like a spotty teenager, it gets worse by the day! But I am told it's a good thing, the oncologist said the people who have the skin reactions do best on the drug...so...bring it on 'spots', bring it on! I can cover you up with make up.
Feel a bit better today in myself, but I'm getting quite tired now in the afternoon and evening. My life is revolving round the morning as that's when I have the most energy. Also its the only time I don't need a hot water bottle for tummy cramps.
Form filling out seems to be a daily activity at the moment, can't wait to for a day when everything is sorted and we can just enjoy life. We are at a standstill at the mo as I'm still recovering form surgery and suffering the effects of chemo (I'm told they will settle down). I want to book a holiday and some weekends away, but we have no money (waiting for my pension and a decision on the life insurance) let alone trying to finish the extension, I don't want to die without seeing my dreams fulfilled. Everything is a battle but I'll fight as hard as I can.
Feel a bit better today in myself, but I'm getting quite tired now in the afternoon and evening. My life is revolving round the morning as that's when I have the most energy. Also its the only time I don't need a hot water bottle for tummy cramps.
Form filling out seems to be a daily activity at the moment, can't wait to for a day when everything is sorted and we can just enjoy life. We are at a standstill at the mo as I'm still recovering form surgery and suffering the effects of chemo (I'm told they will settle down). I want to book a holiday and some weekends away, but we have no money (waiting for my pension and a decision on the life insurance) let alone trying to finish the extension, I don't want to die without seeing my dreams fulfilled. Everything is a battle but I'll fight as hard as I can.
Sunday 8 May 2011
Sunday 8th May
7 weeks post op now and reaching new milestones.
Paul went to work yesterday morning so for the first time I washed my own hair! It was a bit difficult leaning over the bath with the shower head and I had to do most with my left hand but I did it!
I also drove to my sisters for my nieces birthday party, it was great being independent!
Went to boots on Friday looking for the Aveeno moisturiser that has been recommended as my skin on my face is really dry on my eyelids, on and around my nose and my chin (that is also now covered in spots!). Aveen however contains alcohol so I was a bit dubious, did find another product though called Avene (Sarah found it purely by accident) which has no alcohol, I bought it and it seems to be working wonders, my skin feels so much better.
Still getting tummy craps but no where near as bad, need to be careful what I eat though. But no other real side effects to speak of.
I feel it's time for me to start organising my next party, need to come up with the date then its full steam ahead! :)))
Paul went to work yesterday morning so for the first time I washed my own hair! It was a bit difficult leaning over the bath with the shower head and I had to do most with my left hand but I did it!
I also drove to my sisters for my nieces birthday party, it was great being independent!
Went to boots on Friday looking for the Aveeno moisturiser that has been recommended as my skin on my face is really dry on my eyelids, on and around my nose and my chin (that is also now covered in spots!). Aveen however contains alcohol so I was a bit dubious, did find another product though called Avene (Sarah found it purely by accident) which has no alcohol, I bought it and it seems to be working wonders, my skin feels so much better.
Still getting tummy craps but no where near as bad, need to be careful what I eat though. But no other real side effects to speak of.
I feel it's time for me to start organising my next party, need to come up with the date then its full steam ahead! :)))
Friday 6 May 2011
Friday 6th May
Last couple of days have not been too bad, still getting cramps but not as bad probably down to the buscopan and what I'm eating. My face is sore though around my nose and eye lids, it's like eczema, it's also coming in patches around my body.
Went to boots to to get Aveeno but on reading packaging it contains alcohol but we did find another one which is for sensitive skin so I'm going to try that. Also found out that my Estee Lauder foundation I use is alcohol free, I hadn't used it since I started the chemo as I wasn't sure. I hope it all makes me look like my usual self.
Went to see GP this morning too to a/ discuss decreasing the morphine, which I can. b/ find out if I can drive again, which I can. c/ ask her to sign my forms to get my NHS pension on health grounds. Done and posted.
I will very soon be retired!
Went to boots to to get Aveeno but on reading packaging it contains alcohol but we did find another one which is for sensitive skin so I'm going to try that. Also found out that my Estee Lauder foundation I use is alcohol free, I hadn't used it since I started the chemo as I wasn't sure. I hope it all makes me look like my usual self.
Went to see GP this morning too to a/ discuss decreasing the morphine, which I can. b/ find out if I can drive again, which I can. c/ ask her to sign my forms to get my NHS pension on health grounds. Done and posted.
I will very soon be retired!
Wednesday 4 May 2011
May 4th
Had a couple of days of suffering :(( really bad tummy ache especcially after eating. Still struggling to get the balance right too, one minute I'm constipated the other i can't stop going!
getting spoys too lol, luckily not that bad and nothing a bit of make up won't put right.
Things are taking there toll on everyone I think, I think it's frustration and the fact nothing is easy to sort out. Like my pension for instance. It turns out they have send me the wrong form not only that, I am supposed to make a decision on what to do with regads to the lump sum (do I convert it all, some of it or all of it) when they can't give me a prediction on how much it is! Nobody makes anything simple!
I'm frustrated too, I can't do things yet that I know need doing, I am having to rely on others and I don't like to keep asking.
I wish things could be normal again
getting spoys too lol, luckily not that bad and nothing a bit of make up won't put right.
Things are taking there toll on everyone I think, I think it's frustration and the fact nothing is easy to sort out. Like my pension for instance. It turns out they have send me the wrong form not only that, I am supposed to make a decision on what to do with regads to the lump sum (do I convert it all, some of it or all of it) when they can't give me a prediction on how much it is! Nobody makes anything simple!
I'm frustrated too, I can't do things yet that I know need doing, I am having to rely on others and I don't like to keep asking.
I wish things could be normal again
Sunday 1 May 2011
Mayday!
Well now 13 days since I started the chemo, side effects were minimal for first week, dry mouth, slight nausea just after taking it and no real appetite.
Then yesterday it started, I woke up and noticed a rash all over my chest and a bit on my neck, not a bad rash just red spots. Not on my face though which is good. I have been using the no acholol skin care stuff but had sprayed perfume which is probably why I got it where it is!! Note to self be careful where i'm putting it in future, where can I put it though? any ideas? I did spray my clothes but some clothes can't take it. I still want to smell nice lol.
Going back to side effects starting, yesterday I was also doubled up with tummy cramps and also had to run to the loo several times. We bought some immodium and dioralyte (didn't think to get them prescibed, thats a job for tuesday!) Did manage to calm things down by bed time!
Woke up this morning and all was well until about an hour ago, when the tummy cramps started, thats all it is at the mo though, taken some more immodium so fingers crossed.
It's a lovely day again today so intend to make the most of it and go outside, where better for a Sunday lunch than Barrington's Bar? lol
Then yesterday it started, I woke up and noticed a rash all over my chest and a bit on my neck, not a bad rash just red spots. Not on my face though which is good. I have been using the no acholol skin care stuff but had sprayed perfume which is probably why I got it where it is!! Note to self be careful where i'm putting it in future, where can I put it though? any ideas? I did spray my clothes but some clothes can't take it. I still want to smell nice lol.
Going back to side effects starting, yesterday I was also doubled up with tummy cramps and also had to run to the loo several times. We bought some immodium and dioralyte (didn't think to get them prescibed, thats a job for tuesday!) Did manage to calm things down by bed time!
Woke up this morning and all was well until about an hour ago, when the tummy cramps started, thats all it is at the mo though, taken some more immodium so fingers crossed.
It's a lovely day again today so intend to make the most of it and go outside, where better for a Sunday lunch than Barrington's Bar? lol
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