Friday 23 December 2011

Happy Christmas!

 2011 has been the worst year of my life. In March, I didn't know whether I would be around to see christmas. I was diagnosed with a terminal illness, I no longer could work, we didn't know how we would survive financially and I really didn't think I would ever see my house finnished! It's now been 9 months since my diagnosis (14 months if you count the time from misdiagnosis) and how things have changed! 

The RAF benevolent fund made sure we had our mortgage paid until we sorted out our life insurance. The life insurance paid up and subsequently we could get our house finnished. Nursing charities also helped us out financially. Best of all I am responding well to the chemo and by the looks of things I could be around for a while yet!


Earlier on in the year I couldn't see or plan any further ahead than a couple of weeks, now, I'm planning things well into next year. 2012 is going to be a very busy year for me, just aswell I no longer go out to work! Believe it or not I am really looking forward to 2012 and can't wait to really get stuck into my hobbies, going to the gym and the charity work.


I would like to thank my wonderful family, friends and the charities who have helped and supported us throughout this year, I love you all and wish you all a 'very merry christmas and a prosperous new year' xxxxx
 

Friday 2 December 2011

Scan results time again!!!

It's scan results time again!

Well for me, the second one since starting Iressa. The first one after 6 weeks showed a 20% shrinkage from 11cms to 8.5cms. From the reading I've done on tartgeted therapies this seems to be the norm. This time I was expecting (and would have been more than happy with) 'stable'.

I thought the minute I walked into the room I would be able to tell if it was good news or not by their faces, this time no, I couldn't tell a thing.

The oncologist was busy looking at the scan on the screen then glancing at me. "Please tell me, I said" Well I couldn't belive it.....he said the tumour has 'collapsed' and is unmeasurable! he showed me the screen, where the tumour was was a black irregular shaped area. He showed me the pre treatment scan which showed the tumour to be white and cloudy looking, that scan showed white bits all over the lung too. On the new scan the lungs look clear! I asked him what it means, I think he was rather puzzled and said "stable is good, this is better that stable!" He did say there is a lymph node that has enlarged slightly but they would just keep an eye on it and there were no mets anywhere! I only need to see him every 2 months now and get another scan in 6 months! In that alone I have outdone the stats!

It seems to me that Iressa is a miracle drug, I thought it was just supposed to stop the tumour from growing and hence spreading, for me it seems to be much much more. I feel so lucky! Were now off to the Carribean in January with oncology blessing

This shows why it is so important for the research to come up with more innovative treatments like this, us 'patients' with an advanced form of the disease should not be written off!

Sunday 13 November 2011

6 month scan tomorrow!

Well the day is finally here....the long awaited scan, 6 months since the last one. Not too worried about having the scan the 'scanxiety' will come when I get the results in 2 weeks time (30th Nov).

I am hoping and parying for good news so please please pray with me. Everyday now I can see more future and I don't want that to end. Its been hard not to be thinking of and planning things more than a month ahead and I so want to think about things the way I used to.

I haven't been to work now for over 8 months! I don't know where the time has gone! Still haven't got round to any sewing lol but plenty of knitting and crochet has been done, well it will soon be christmas!

The extension is about 80% complete and should be mostly done by christmas, there will maybe be just a couple of things we can't get done by then like renering outside and the 'feature' wall inside but I will be able to get the house straight! 

Well see you again on the 30th! 

Wednesday 19 October 2011

long time no see....

It feels like its been ages since i've posted suppose its because I've been busy and getting on with my life.

Its now been 7 months since official diagnosis and 11 months since the tumour was discovered albeit diagnosed as pneumonia! So far I am doing very well, I don't really feel ill and there isn't much I cannot do. I have joined the gym but think I did a bit too much in the first week! I have to remember I am not the same as before.

I have done all of my christmas shopping (including wrapping paper and cards!) some of you will think I am mad, there are reasons for this. The first one being, if the scan is good in November, Paul and I want to go away for the first few weeks in December for our 10th wedding anniversary, which won't give me anytime for 'last minute' shopping. The second one: I don't want the stress of rushing around crowded shops not knowing what to buy and thirdly: if the scan is not good, I won't feel like doing it, plus the treatment will change and I may be a bit worse for wear. Obviously, I am going with reason 1!

The extension is coming on a treat even though we seem to be going 3 steps forward 2 steps back! On removing the old bathroom tiles floor we found the joists were rotten (the bathroom is above the kitchen) so now the kitchen ceiling had had to come down so you can imagine the mess which seems to have migrated through the whole house!!!

I have also just been on a trip to Cannes with an old friend for a long weekend. Cannes was fab we even went to Monaco/Monte Carlo which was beautiful, the train followed the coast and the scenery was breathtaking. The french are lovely, we stayed in the 'prestidgious' Hotel Martinez (which I managed to get for a bargain price!) if was fabulous! And of course I did manage some shopping!

Thursday 8 September 2011

Olympic Torch

I had notification today that I have been nominated to carry the Olympic torch!

The nomination comes from one of the theatre sisters at the John Radcliffe Hospital where I had been working when I found out that I had lung cancer. I didn't realise I had made such an impression on them as I had only been there 5 months.

I am really touched and very excited, I don't for one minute think I'll be picked but anyone who knows me knows how much I love the athletics on TV - I never miss any meeting and have been watching the olympics since Olga Korbut  won all those medals in the Munich Olympics of 1972! I always cry with emotion when anyone wins a medal (I just think of how proud they are and their country). I have never been any good myself, only ever winning the 'thread the needle' race at junior shcool purely because I was good at sewing lol.

Keep your fingers crossed folks, perhaps this can be a way of raising awareness that may help others X

Monday 29 August 2011

Long time no see....

Seems so long since my last post!

Been very busy jet setting lol.....been back from Spain one week now and in that week have also been to London for a couple of days to see 'South Pacific' which incidentally was fab!And of course a bit of shopping!

Whilst I was away, I realsied I kept forgetting to take pain killers! I was only on paracetamol, diclofenac and MST 10mg at night, but as I kept forgetting I decided to see how I got on completely without and guess what, I DON'T NEED THEM ANYMORE! Well I do have the odd couple of paracetamol for the odd ache I get after I have done things sometimes, but on the whole It's pretty good.

Had a couple of days of not doing anything, its been nice to just relax at home. Off to London again on Wednesday, just for the day though, as I bought a coat from Burberry in Puerto Banus and I need to take it to a Burberry store to get them sleeves turned up (as usual they are too long). I forgot the receipt last week when we went. Paul wants to come again, which quite surprises me as he hates shopping, I think it's to stop me spending more money lol, however we have got 7 hours there and Ive never been down Sloan Street before, It just has to be done!


We are pretty much sorted now financially and even have enough to finish the extension,  hopefully work will commence this week so I should get my new kitchen, en suite and walk in wardrobe in the next couple of months. Would give it all back in exchange for my health though. As for now though I feel great and intend to live a bit!

 

Friday 5 August 2011

5th August

Don't know where the time is going!!! Only been home a few days, a few busy days at that, bloods and chest xray Tuesday (1st day home) Oncolgy appt wednesday, GP Thursday, and Mamagram today!!! Good news from Onc, chest xray good and no need for scan until December!

In between all that, doing holiday washing (will need it all again next week when we go away again) finishing making props, costumes bar and garden for 'Wild West' party tomorrow, need to sort out house ready for building work to comence whilst we're away. How did I ever manage to find time to go to work??

For now, I'm making the most of being well and just enjoying every minute xx

Wednesday 27 July 2011

Saludos desde Menorca!

Arrived in Menorca 18th July. It has been a mixture of really hot weather and rain! Not too bad though as the rain has become a much needed break from the heat...phew....

I have stayed mainly in the shade and have been using fctor 30, still managed to pick up a bit of colour though (apart from legs, fake tan there I'm afraid lol.

Managed to watch the cricket (rainy day) and football (Villa v blackburn, as we speak  - rain again!)

Tummy trouble has plagued me yet again, especcially as now I am almost morphine free. Immodium is rapidly becoming my NBF! I am eating very healthily (apart from the pancakes at breakfast every 3 days which are to die for, yum) and I rocken I have not put on a single pound. Alcohol, just don't feel like it...It took us 4 days to consume a bottle of red wine at dinner lol. We have been goig to the bar for a cocktail before dinner though ( I'm no good once I've eaten)

. The hotel is lovely, very modern and quiet (no children) we are not the oldest here by a long shot but are probably the first in bed lol. We have BBC 1, 2 and 3! and sky news, plus the internet to keep us entertained.

We hired a car for 4 days and visited most of the island! the old town of Cuitadela was fab for shopping but unfortunatly we went on Sunday when everywhere was closed :(( much to Pauls delight! I did manage to get a pair of 'Menorcan sandles' to add to my shoe collection though! lol

We now have 5 days left, home for 10 then off again to mainland Spain for another 2 weeks! 

Adios for now! X

Wednesday 13 July 2011

Day after race for life!

Did the race for life last night with my daughter and my 2 sisters. We are still counting the money we have raised for cancer research uk but think the grand totel is just short of £2,000!

We had a great time although it was very emotional and I had a lump in my throat for most of the evening. Sarah and I were interviewed by BBC radio Stoke and I was even on the radio this morning for a live interview with 2 others who took part last night, only lasted a couple of minutes thank goodness, I think I'm more of a 'behind the scenes' kind of gal. I did have tummy cramps on the way round but used one of those 'cura heat' patches so not too bad. Over took loads of people too and manged to ge round the course in under 50 minutes!

This will be my last entry for a couple of weeks as we are off on holiday on Monday! 

Friday 8 July 2011

Friday 8th

Where is the time going?? Don't know how I ever managed to fit in work lol.

Been down to Oxford (hello everyone if you are reading) to visit friends at the JR. It was lovely to see everyone, I miss them all, I loved working there.

Been camping for the weekend too in Skegby to the annual 'do' this year was the Kangaroo do. Found camping a little hard, the weather was great duing the day but I got tired and needed to lie down, in the tent was impossible as it was like a sauna so had to revert to car with seat reclined and AC on! lol. Then at night it was absolutely freezing. Next year we will hire a motor home and go off on an adventure for the week!


Went on to York, what a beautiful city. Stayed in the Royal York Hotel and to be honest for a 4 star hotel a premier inn would have been just as good, wasn't worth the money apart from the location. I had been a little unwell (tummy troubles since Saturday), since I cut down on the morphine things have gone the other way. I had forgotton my hot water bottle (I need it to ease the gripy pain) so we bought some 'curaheat' adhesive patches. You have to stick them to your clothes though and my 'clothes' (well undergarments) were a bit too small! So I could only use them in bed at night stuck in side a pillow case! There we were, just managed to get to sleep on the first night and the fire alarm went off! It was 12.06! Everyone had to go outside until the firemen arrived and checked the place out, after that we couldn't get back to sleep. 


We enjoyed York, walked round the city walls, visited Art gallery did some shopping and eat out. On the way home on Tuesday we even managed to fit in a visit to the Trafford centre for more shopping! It was Pauls idea and he hates shopping, he must love me. Luckily for him, I'm not the same as I used to be I get tire and fed up shopping now lol, so we were only there about 2 hours.


Been busy making props for the next party - Wild West- so have now finished painting cactus and totem pole lol, need to keep busy takes my mind off everything. Have started coughing again now and most of the side effects have dissapeared (exept for tummy ones), I Hope its still working. I do think about it everyday sometimes I have forgotton which is good as I just get on with things normally, things will never be 'normall' again though will they?


Sunday 26 June 2011

26th June, been busy

Well it's been a while since my last post, been rather busy of late.

Last weekend we had the 'first' party of the Barrington party season, It was a much smaller than usual afair (I needed to see how I would handle it) but great all the same. Loved all the outfits, it was so much fun getting everything together it's now got me in the mood to have many more this year! Plans for the Wild West Extravaganza are well underway.

It was Chris and Jenni's wedding yesterday and what a lovely wedding it was. Can't believe Jenni made all that bunting! It was beautiful all of it. So lovely to see them together and the speak Chris made bought tears to my eyes (I cry through most of it I must admit). I even lasted until 11 o'clock (I did suffer with tummy ache from about 7 though, but of of the villagers fetched me a hot water bottle). Paul and I even had a couple of dances.

Since my last post we (thats me and my sisters) have also been interviewed by Cancer Reasearch UK as they are focusing on lung cancer awareness this year and have been in all the local papers.

Got a busy month ahead now! Going to 'Australia' next weekend lol well 'Australia' in a field near Nottingham. For the Kangaroo Doo courtesy of lovely friend Chris and family. Then off to York staright after for a couple of days. We don't need to go at the weekend we have all week and it was cheaper! lol.

Saturday 11 June 2011

Saturday 11th

Whilst in Cornwall I was contacted by the hospital (xray dept) and given an appointment for a CT scan for last Friday. I was a bit taken aback and concerned as my oncologist had said 2-3 months for the first scan to see if the treatment is working and this was only 6 weeks! My emossions were all over the place as 'what if they were scanning me too soon for the treatment to be working' and subsequently the treatment would be stopped! I was even more concerned and annoyed when I found out that pharmacy had asked for the scan as the treatment was 'expensive'!!!

Low and behold I went for the scan and on tuesday I found out that not only was the treatment working but the tumour had shrunk from 11cms to 8.5cms in only 6 weeks! It makes the spots and rashes all worth it. There will now be no question to me continuing with the treatment and my next scan is 3 months time.

I have also found (and joined) a forum calles 'Inspire' there are lots of people on there who are living with and surviving lung cancer even with advanced inoperable lung cancer like me. All of this has really given me hope and for the first time since this happened I feel that I can actually feel excited about life and not feel flat as I have been.

I am trying to cut the morphine down and hope that in the next couple of weeks I will be off it completely! That will be great news for my bowels!

Got a busy few weeks ahead now! Wedding reception tonight (congratualtions Dave & Andrea) Punk Party next saturday (need to figure out how to upload photo's on here!) Chris and Jenni's wedding the week after (Paul is best man xx) and then off to York to stay in a posh hotel the week after that! Then amongst all this I will be trying to find a nice holiday for Paul and me to go on straight after my next oncology and chemo appt! No chance of my retirement becoming boring!

Sunday 5 June 2011

Sunday 5th June

A lovely peaceful quiet Sunday morning....boy do I need the rest. We haven't stopped since we got back from cornwall. Just been for my Sunday morning walk with Victoria and am having 5 minutes writing this blog and watching Gok before going to the shop to buy bits for paul to cook Sunday lunch!

The week away has done me the world of good....I feel much calmer (not that I wasn't quite cam anyway) I don't feel ill although I don't feel the same as before. I feel that I can look forward to things and get excited about things and not feel as 'flat' as I did before. I almost feel back to normal as far as having a life is concerned, I just haven't got as much energy yet!

I am also now officially retired!!!! Not by choice (I wasn't ready for it yet) by neccessity! haven't got any money yet though, It's going to take 2-3 weeks! As soon as it comes I'm booking a holiday abroad for me and Paul and going shopping! I've always wanted to go on a spree with £2000 as per Trinny and Suzanna so I'm going to do it lol!

Just waiting now for a decision on the life insurance, then It will be full steam ahaed to finnish the extension and Paul and I can just get on with enjoying life together and loving each other.

Tuesday 31 May 2011

May 31st

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.

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.

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

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.

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! :)))

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!

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

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

Friday 29 April 2011

Royal Wedding Day

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.  

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. 

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.

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!

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

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.

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

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

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!

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.

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

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. 

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??????

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

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.