What a lovely day! The wedding was lovely, the bride looked stunning as did the bridesmaids I cried nearly all the way through it!
Weve been to a friends house for bucks fizz and bacon sarnies, I was great
In fact I've had a great couple of days, yesterday me and my sisters went to Liverpool to a fabric warehouse I went to once when I was working for 3M. Had no idea where it was (or if we would find it again) just knew it was close to Liverpool Royal Hospital! lol. Howevere we did find it and would you believe it, it was on Stafford Street! Got some great fabric, can't wait to get well enough to start sewing.
Had a visit from another friend I'd not seen for a while on Wednesday too with her gorgeous liitle 5 month old boy, can't cuddle him yet but should be able to soon. It was great to catch up.
Got a lovely family and some super friends, got one heck of alot to live for.
Friday 29 April 2011
Tuesday 26 April 2011
Tuesday 26th
! week now since I started chemo.....the only thing I am suffering from is loss of appetite, eating because I need to, but never feel hungry. Oh and feeling slightly nauseas...Oh and a very dry mouth and always feeling thirsty. Oh and a bit of tummy ache. Not bad at all, I just hope its working!
Its ben a lovely sunny weekend, and been out and about and in the garden. Did have a bit of a wobble on Sunday. It's very hard to not have this monster in your mind raising its ugly head all of the time.
I am trying to be normal but the usual things you think about are no longer there, like planning next years holiday, well planning anything for the future really, saving up for those designer shoes I've always wanted. I no longer have an income...or time.
Its ben a lovely sunny weekend, and been out and about and in the garden. Did have a bit of a wobble on Sunday. It's very hard to not have this monster in your mind raising its ugly head all of the time.
I am trying to be normal but the usual things you think about are no longer there, like planning next years holiday, well planning anything for the future really, saving up for those designer shoes I've always wanted. I no longer have an income...or time.
Saturday 23 April 2011
Saturday 23rd
Have had a lovely couple of days, Thursday lazy shopping with my sisters sorting out my new skin care regimen, lovely quality time though, sunny day, coffee, bliss.
Yesterday had my eyes tested, I couldn't read any of the packaging the day before which was really frustrating. Not had my eyes tested since 2007! (where does the time go?). Can't believe I had to pay though when someone unemployed or getting tax credits doesn't! I'm not earning anymore and am never likely to be. That's a law that needs changing.
Have now had chemo for 4 day's and as yet (hope I am not speaking too soon) have no real side effects apart from not feeling at all hungry and could quite happily not eat anything! Paul made sure though that I do have my breakfast and a proper evening meal! My memory doesn't seem to be that good either lol. I am very tired too especcially early evening, but I'm raring to go in the morning!
Paul has been working on the house the last couple of days trying desperatly to get some of the extension (we had started before all this) finished. He's so tired and then has to look after me when he's finished, its hard on him.
For some reason I'm in a lot more pain this morning, I only took the MST an hour ago, its just come on really strong, not been like this before since I came out of hospital. I don't want to take more drugs though I want it to get better.
Yesterday had my eyes tested, I couldn't read any of the packaging the day before which was really frustrating. Not had my eyes tested since 2007! (where does the time go?). Can't believe I had to pay though when someone unemployed or getting tax credits doesn't! I'm not earning anymore and am never likely to be. That's a law that needs changing.
Have now had chemo for 4 day's and as yet (hope I am not speaking too soon) have no real side effects apart from not feeling at all hungry and could quite happily not eat anything! Paul made sure though that I do have my breakfast and a proper evening meal! My memory doesn't seem to be that good either lol. I am very tired too especcially early evening, but I'm raring to go in the morning!
Paul has been working on the house the last couple of days trying desperatly to get some of the extension (we had started before all this) finished. He's so tired and then has to look after me when he's finished, its hard on him.
For some reason I'm in a lot more pain this morning, I only took the MST an hour ago, its just come on really strong, not been like this before since I came out of hospital. I don't want to take more drugs though I want it to get better.
Thursday 21 April 2011
Thursday 21st
Feeling a bit better today, (after a couple of days sobbing).
No side effects to mention as yet, just hope I haven't spoken too soon lol. I have been asked to keep a diary of said side effects as I am only the second person in this area to have this treatment.
You have to avoid all skin care products with alcohol in them...hmmmm...this is proving quite a challenge as I ended up giving nearly everything I have away yesterday and subsequently still have yesterdays make up on as I didn't have anything to take it off with lol. This is to minimise and/or not to aggrivate the acne rash that I may or may not get. But I'm not taking any chances!
We are going into town today to see what we can find that is permitted and ask lots of questions to the shop assitants. When I have done this I'm going to write a leaflet for the chemo unit to give any other ladies that might (god forbid) find them selves in this position.
Firstly though, off to see practice nurse to get this rogue stitch removed from the drain site! It's been there 4 weeks nearly now so 'ouch' I think!
No side effects to mention as yet, just hope I haven't spoken too soon lol. I have been asked to keep a diary of said side effects as I am only the second person in this area to have this treatment.
You have to avoid all skin care products with alcohol in them...hmmmm...this is proving quite a challenge as I ended up giving nearly everything I have away yesterday and subsequently still have yesterdays make up on as I didn't have anything to take it off with lol. This is to minimise and/or not to aggrivate the acne rash that I may or may not get. But I'm not taking any chances!
We are going into town today to see what we can find that is permitted and ask lots of questions to the shop assitants. When I have done this I'm going to write a leaflet for the chemo unit to give any other ladies that might (god forbid) find them selves in this position.
Firstly though, off to see practice nurse to get this rogue stitch removed from the drain site! It's been there 4 weeks nearly now so 'ouch' I think!
Tuesday 19 April 2011
Chemo begins....
Just got home from hospital, I hate going there now it makes me feel like a patient and it makes me think about it. I feel safe and normal at home.
I am not brave, I am frightened, especcially after reading and signing the concent form for treatment. PALLIATIVE.....was the first word. I don't want to die.
So what's next, side effects, the usual appetite loss, nausea, diarrhoea, blurred vision, hair thining, acne!! (face and back) curly long eyelashes !?! painful ridged finger nails, SOB, nose bleeds...I feel depressed.
why why why why.....Please god, please give me strength
I am not brave, I am frightened, especcially after reading and signing the concent form for treatment. PALLIATIVE.....was the first word. I don't want to die.
So what's next, side effects, the usual appetite loss, nausea, diarrhoea, blurred vision, hair thining, acne!! (face and back) curly long eyelashes !?! painful ridged finger nails, SOB, nose bleeds...I feel depressed.
why why why why.....Please god, please give me strength
Monday 18 April 2011
Monday 18th
Had a lovely weekend spent mostly in the garden in my new reclining garden chair (thanks Sue). I've temporarily resigned from my position as 'bar manager' and have appointed sarah in my place. She started her first shift early and has already put up the 'NO SMOKING' signs!
Went out for a meal Saturday tea time but was too tired to have dessert, when have you ever know me to turn down chocolate fudge cake! lol.
Had the BBQ on on Sunday which was nice, and trying out the play lists for the summer parties I'm planning. Also walked all round Rowley Park- I'm getting faster!
last day of relative normaility for a while today as tomorrow we visit chemo pre assessment and our appointment to see the onchologist has been bought forward to just before so I think results maybe back. They did say that I would be able to start treatment straight away so looks like this is it!
Going to enjoy today, Paul is going to put TV outside for me so i can sit in the garden at the bar this afternoon. No alcohol today though.
Went out for a meal Saturday tea time but was too tired to have dessert, when have you ever know me to turn down chocolate fudge cake! lol.
Had the BBQ on on Sunday which was nice, and trying out the play lists for the summer parties I'm planning. Also walked all round Rowley Park- I'm getting faster!
last day of relative normaility for a while today as tomorrow we visit chemo pre assessment and our appointment to see the onchologist has been bought forward to just before so I think results maybe back. They did say that I would be able to start treatment straight away so looks like this is it!
Going to enjoy today, Paul is going to put TV outside for me so i can sit in the garden at the bar this afternoon. No alcohol today though.
Friday 15 April 2011
Friday 15th
It's the day after my birthday! My fantastic birthday courtesy of my lovely family and friends.
I have my hair done and a manicure (never had one before) Paul had done some work at the salon and the lovely Annemarie who ownes it and who I had only met the day before gave me the experience as a birthday present along with some shampoo and conditioner especcially formulated for people having chemo. How lovely.
I came to to a lovely birhday lunch with all my family and honary sister Victoria and 3 birthday cakes, there was also 3 interflora delieveries! Our living room looks like a florist and smells lovely.
Not to mention the 55 presents I had from Tanya all individually wrapped, it really was a 'pamper hamper' and even contained chocolate and home made biscuits!
That's it now you lot have set a presidence and I'm certainly going to be around for more birthdays if they are going to be like this one!
I am one lucky lady xxxxx
I have my hair done and a manicure (never had one before) Paul had done some work at the salon and the lovely Annemarie who ownes it and who I had only met the day before gave me the experience as a birthday present along with some shampoo and conditioner especcially formulated for people having chemo. How lovely.
I came to to a lovely birhday lunch with all my family and honary sister Victoria and 3 birthday cakes, there was also 3 interflora delieveries! Our living room looks like a florist and smells lovely.
Not to mention the 55 presents I had from Tanya all individually wrapped, it really was a 'pamper hamper' and even contained chocolate and home made biscuits!
That's it now you lot have set a presidence and I'm certainly going to be around for more birthdays if they are going to be like this one!
I am one lucky lady xxxxx
Wednesday 13 April 2011
Wednesday 13th
Woke up in the middle of the night last night, no pain, but the big C had escaped from the place I had hidden it and came to plague me. I couldn't get it out of my mind so I had oramorph in order to restrain it and get back to sleep. I then slept until 8.30!
We watched the new Robin Hood this morning on anytime plus and had a lazt morning. Were off to hospital again in a min to hand in the 24 hour urine collection and have yet more blood taken, (I'm informed that will never change now, so I'd better get used to it).
Then were going to doctors to get script for 'emergency quick acting morphine' for when I'm out and about (its takes it's toll). Then the thing I am looking forward to, Cafe Nero for a decaff americano and a choc chip cookie lol.
Still waiting for genetic marker results so I know what type of chemo I'm going to have, but should be starting it in one way or another next week. I wish it would hurry up. Not looking forward to the side effects but I'll take anything if it helps me, even a new hair style!
Fund raising ideas are coming in so need to start and organise something soon, will give me a focus.
Have developed an allergy to numbers....I don't want to see them it makes me think of time scales and I don't want to do that, so no mention of '50' tomorrow please xx
We watched the new Robin Hood this morning on anytime plus and had a lazt morning. Were off to hospital again in a min to hand in the 24 hour urine collection and have yet more blood taken, (I'm informed that will never change now, so I'd better get used to it).
Then were going to doctors to get script for 'emergency quick acting morphine' for when I'm out and about (its takes it's toll). Then the thing I am looking forward to, Cafe Nero for a decaff americano and a choc chip cookie lol.
Still waiting for genetic marker results so I know what type of chemo I'm going to have, but should be starting it in one way or another next week. I wish it would hurry up. Not looking forward to the side effects but I'll take anything if it helps me, even a new hair style!
Fund raising ideas are coming in so need to start and organise something soon, will give me a focus.
Have developed an allergy to numbers....I don't want to see them it makes me think of time scales and I don't want to do that, so no mention of '50' tomorrow please xx
Monday 11 April 2011
Monday 11th
Slept all through the night last night and with the back rest on its lowest setting, might try without it tonight. Might also try the loo without the raised seat too lol. Things are looking up :))
Went to see surgeon today too, he explained the teatment to us again, if I can have the genetic one we have a 43% chance of it shrinking, so fingers crossed. May need to find a good haidresser though, lol, gives me a chance to try out some new hair styles.
Done a bit more walking today, although it does take its toll. I'll sleep well tonight!
Went to see surgeon today too, he explained the teatment to us again, if I can have the genetic one we have a 43% chance of it shrinking, so fingers crossed. May need to find a good haidresser though, lol, gives me a chance to try out some new hair styles.
Done a bit more walking today, although it does take its toll. I'll sleep well tonight!
Sunday 10 April 2011
Sunday Morning
Had a lovely day with my lovely family yesrterday. You are the best. Paul had some well deserved respite for a couple of hours.
Managed a 15 minute walk too so going to try and do 20 mins today in the park.
Had to start the 24hour urine collection today (creatinine clearence, pre treatment) It's rather tricky to catch it with the raised toilet seat but I think we have workd out a system lol. There is no dignity in being ill but it doesn't seem to matter.
I been home 10 days now and can honestly say the recovery from the op isn't as bad as I thought it was going to be. The morphine probably helps though!
Still don't know how I'm supposed to feel, I think not beleiving it is working wonders for me. I don't want it consuming my mind 24/7. I suppose everyone deals with it in their own way, I would like to meet someone else who is going through it though as no one else can possibly understand how and what I feel.
I want to do some fund raising for SSAFA (soldiers, sailors, air force association) they have made it possible to us to not have to worry about money for a few months and until the other benefits are in place and for Paul to be at home with me.
I am hoping I can get myself well enough to have a bit of my normal life back for as long as I can, there is so much I want to do.
Managed a 15 minute walk too so going to try and do 20 mins today in the park.
Had to start the 24hour urine collection today (creatinine clearence, pre treatment) It's rather tricky to catch it with the raised toilet seat but I think we have workd out a system lol. There is no dignity in being ill but it doesn't seem to matter.
I been home 10 days now and can honestly say the recovery from the op isn't as bad as I thought it was going to be. The morphine probably helps though!
Still don't know how I'm supposed to feel, I think not beleiving it is working wonders for me. I don't want it consuming my mind 24/7. I suppose everyone deals with it in their own way, I would like to meet someone else who is going through it though as no one else can possibly understand how and what I feel.
I want to do some fund raising for SSAFA (soldiers, sailors, air force association) they have made it possible to us to not have to worry about money for a few months and until the other benefits are in place and for Paul to be at home with me.
I am hoping I can get myself well enough to have a bit of my normal life back for as long as I can, there is so much I want to do.
Friday 8 April 2011
Friday 8th
Just had a lovely bath with the aid of Paul and my new bath lift. Hair wash too, it feels great :)
Got pain though, and still feel very weak. I don't kow if this is normal following the surgery or the cancer??? I really want to get back to normal at some point. It is so fristrating not being able to do basic stuff for myself, like putting my hair in a turban after it was washed. How do you explaine that to someone who has never done it?
It's a lovely day outside, so going to sit in the garden later...well sit at the bar in the garden later lol
Got pain though, and still feel very weak. I don't kow if this is normal following the surgery or the cancer??? I really want to get back to normal at some point. It is so fristrating not being able to do basic stuff for myself, like putting my hair in a turban after it was washed. How do you explaine that to someone who has never done it?
It's a lovely day outside, so going to sit in the garden later...well sit at the bar in the garden later lol
Wednesday 6 April 2011
Onchology appointment day
First appointment with Onchologist today.
For the first time this is hitting home, I still thought in the back of my mind it was a mistake or a dream I hadn't yet woken from.
Today...it became real.
How did the tumour get so big? (11cms) Why didn't anyone see it? Why didn't anyone take me seriousl? It's now too late. Sorry but 'i'm sorry' doesn't cut it. Everyone elses life will go on, mine won't.
I am angry. I am frightened. I am not ready to die.
I still have to wait to start treatment. There is an option of a new treatment which is tablets but only if some test that has been already sent come back poistive, or I can have chemo. The tablets option has better results. I'm going for that if I can. I need pre assesment but that can't be done until 19th, tablet treament can be started straight away after but chemo can't start until 27th (something to do with department being short staffed!!!!!!!) This is my life we are talking about.
I said I didn't want to know anything else......How do I accept it? I can't. I don't know what to do. How dare all those people stand outside main reception at the hospital smoking?????? I couldn't help but breath it, how dare they???????
I feel safe here at home with Paul.
For the first time this is hitting home, I still thought in the back of my mind it was a mistake or a dream I hadn't yet woken from.
Today...it became real.
How did the tumour get so big? (11cms) Why didn't anyone see it? Why didn't anyone take me seriousl? It's now too late. Sorry but 'i'm sorry' doesn't cut it. Everyone elses life will go on, mine won't.
I am angry. I am frightened. I am not ready to die.
I still have to wait to start treatment. There is an option of a new treatment which is tablets but only if some test that has been already sent come back poistive, or I can have chemo. The tablets option has better results. I'm going for that if I can. I need pre assesment but that can't be done until 19th, tablet treament can be started straight away after but chemo can't start until 27th (something to do with department being short staffed!!!!!!!) This is my life we are talking about.
I said I didn't want to know anything else......How do I accept it? I can't. I don't know what to do. How dare all those people stand outside main reception at the hospital smoking?????? I couldn't help but breath it, how dare they???????
I feel safe here at home with Paul.
Monday 4 April 2011
living with...: monday blues
living with...: monday blues: "A bit sad today, feel like a burden as I still can't do basic stuff for myself.Paul is run ragged and I don't like it. I still fe..."
monday blues
A bit sad today, feel like a burden as I still can't do basic stuff for myself.Paul is run ragged and I don't like it. I still feel like i'm talking about someone else but bits of reality are creeping in. I'm not ready for this. I want to be better now so I can make the most of every day.
Perhaps its because the financial things are falling into place and the more things that are beining resolved leaves not alot else to think about apart from the one thing that may not be resolved.
why me??????
Perhaps its because the financial things are falling into place and the more things that are beining resolved leaves not alot else to think about apart from the one thing that may not be resolved.
why me??????
Sunday 3 April 2011
Mothers Day
Had a lovely day today with Paul, Tanya and Stuart. Lovely flowers and hand made gifts that bought tears to my eyes. Paul even did my hair for me again with my heated rollers lol.
Stuart, who had incidenatlly been on masterchef cooked a 3 course mothers day meal that was so yummy and ...there is even enough left over for another day. (I don't want this to be the last one I have with them all).
I get so tired though at the moment I couldn't stop falling asleep, I so wish I can get back to as normal as possible quickly that I think I am pushing myself too hard too soon. I think I can do things but I physically can't and it gets frustrating.
Each day is going too quickly...slow down, I want to get off
Stuart, who had incidenatlly been on masterchef cooked a 3 course mothers day meal that was so yummy and ...there is even enough left over for another day. (I don't want this to be the last one I have with them all).
I get so tired though at the moment I couldn't stop falling asleep, I so wish I can get back to as normal as possible quickly that I think I am pushing myself too hard too soon. I think I can do things but I physically can't and it gets frustrating.
Each day is going too quickly...slow down, I want to get off
Saturday 2 April 2011
Early days
2/4/11
Been home from hospital now for 3 days now. Paul, my husband, has had to learn quickly how to be a nurse and a 'house husband' and is doing a fantastic job. I love you Paul.
We are trying to be very positive and so far are laughing every day. I have to get over the pain and extreme tiredness following my thoracotomy ( that unfortunately couldn't remove the tumour) to prepare for the next stage - chemotherapy- we see the oncologist on Wednesday. I am happy to say, my appetite is very good so I am putting myself in the best possible place to fight this thing.
We have had so much to come to terms with emotionally, physically and the financial worry all in a very short space of time, 10 days to be exact, but we are getting there.
Been home from hospital now for 3 days now. Paul, my husband, has had to learn quickly how to be a nurse and a 'house husband' and is doing a fantastic job. I love you Paul.
We are trying to be very positive and so far are laughing every day. I have to get over the pain and extreme tiredness following my thoracotomy ( that unfortunately couldn't remove the tumour) to prepare for the next stage - chemotherapy- we see the oncologist on Wednesday. I am happy to say, my appetite is very good so I am putting myself in the best possible place to fight this thing.
We have had so much to come to terms with emotionally, physically and the financial worry all in a very short space of time, 10 days to be exact, but we are getting there.
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