Thursday, 23 December 2010

Christmas past

Carole.s blog has reminded me of traditions that differ in each family.We were always allowed to open our Santa presents when we woke which would always include a colouring book and my favourite of all a paper doll with cut out dresses with tabs which you folded over the shoulders to create your own look !!We opened family presents after Christmas dinner but also AFTER THE DISHES WERE WASHED!!!!I hated this idea but I must admit I carried it on.You have never seen dishes washed,dried and put away so quickly and the parents dont have to argue with the children.Brilliant !
We would then have a second opening and more things to occupy us .We never had a lot but we knew that a lot of sacrifice went into our gifts
My daughter is 27 and she still has a colouring book and pencils and we sit and colour.
Once the sprouts are boiling it is all downhill from there .
Festive greetings to everyone and a breahthrough in 2011

Wednesday, 22 December 2010

Getting there !!

After the excitement of recent weeks,I am now able to spend more than a few minutes at a time away from the sofa !!I actually went to Tesco yesterday and with the aid of resting on the trolley and Rick doing the legwork have stocked up on all but the veg.Those that know me will understant what a huge thing it has been for the Queen of Christmas shopping to stay home while the shops are selling Christmas goodies !!!!My parents and our son and his wife and baby are here for Christmas but instead of me doing it all which I love,we are all pitching in.It is so good to get dressed most days and be able to do small jobs.
Had fabulous news today from Dot,the spots have gone from her lungs(fab news for me too as mine has spread )and she can enjoy her Christmas and Tony is sounding his old self and dear Carole is taking control of her bag.2011 has to be a good year for us all.
Getting ready for a cyber drink tomorrow on off topic with the lovely people here,just because we cant go out doesnt mean we cant get together over a drink or two and be together in spirit(or in spirits)
All that is left is to put the sprouts on to boil.About 7am Christmas morning should give them enough time to be cooked by 1.30pm!!!
Getting excited now.xxxxxxxxxxxxxxxxxxxx

Tuesday, 7 December 2010

I love the NHS !!!

As you know I have been having tight chest and breathing problems and am waiting to see the heart specialist next Monday.Last Thursday I was off my food and all night I vomited if I stood up  and had to sit upright all night being sick if I sipped water or anything.At 8.30 Ricky rang our surgery and requested a home visit and the GP came 1/2 hour later and took my BP which was 140 over 60.He said I need ed to be admitted and rang thehospital and ambulance.The hospital did all tests and the echo showed a lot more fluid in the pericardium of the heart than 4 weeks ago andneeded to be drained but the specialists teach on Friday so they rang Morriston hospital where they said 2 doctors would do it if I could get there immediately.Blue light ambulance ride later straight into treatment room where 2 doctors and 2 nurses were waiting .
One had the monitor showing my heart which should have been filling the pericardium sack but 2/3 of it was fluid with a heart desperately trying to pump and the other side the doctor  inserted the needle into the heart space to drain the fluid while i watched it on the screen with. full commentary .Rather painful on times but for a good reason as they drained off 600mlof fluid and a further 300 into the drain overnight.How on earth can almost 1 litre of fluid be where it shouldnt?So at 8.30 we rang a doctor and by 4pm it was all over!!!I can now walk upstairs without tightness and my heart fits the space it is meant for!It shouldlnt reoccur as I am no longer on Sutent but  the lovely doc said if it does to ring him straight to save silly waiting time !!!To think that years ago doctors didnt even talk to the patients.
So all in all an exciting time with a good result.
Hope all my cyber pals have equally good results.
Came home Monday

Friday, 26 November 2010

New start

3 weeks ago i did not think i would see Christmas at a few points.I still have shortness of breath and have an appt to see the heart specialist next month and awful cough but feel better on this new chemo.Hopefully it will work !!I have 3 days of steroids which are great ,I can do small jobs then.Sutent did its job for 8 months and i am grateful but i am soooooooooooo glad to be off it.
Next round coming up.
Harry stayed with us last night and we put up the christmas decorations.He was so excited and really made things special.Love this time of year !!!

Wednesday, 17 November 2010

New start

Started my new chemo today,Vinorelbine which is for breast and lung cancer.1 tablet once a week plus anti sickness and steroid.Quite looking forward to the steroid giving me a boost.Also came home with 2 painkillers as the growing tumours are pressing on the windpipe and causing pain an my neck and shoulder and toothache in all my bottom teeth so well looked after again !It is 2 years this week that I was rediagnosed so good going so far.
Going to stay at our daughters house tonight,havent seen the 2 grandchildren for 2 weeks due to my infection and then they had a cold so lots of cuddles coming up !!I have not avoided people with infections until now but need to use my head a bit more.Really annoys me as Debbie needs help if they are ill and thats when I have to stay away.Ah well.She is such a good mum.
Fingers crossed that this one works as well as the last 4 chemos,I am working my way through them all slowly !!

Sunday, 7 November 2010

Time out

I have been feeling absolutely rotten since last week.A chest infection on top of the fluid on the lung and heart not up to scratch has knocked me for six and I have sleptfor 3 days and lost 1/2 stone.Feel a bit better today and glad to get back to my cyber family.Thank you all for being concerned and sorry for worrying you.
Had a bath and got dressed today which felt as if i had done a weeks work.How strange we are,in no control of our own bodies.What really annoys me is not being out in this lovely weather and missing my grandchildren.I dont know what i would do without Ricky looking after me.The worse part is knowing how I am worrying everyone.
Roll on next week when things should get better.
Dear Carole has her op this week and it MUST be a success,she will be missed greatly and we will all be looking forward to her next post.So much love her and her family.

Wednesday, 3 November 2010


I had my second Reiki session today.A third of the way through I felt a strange sensation across the bottom of my ribs and stomach,like a slight stretching feeling and then a light feeling.When it had ended I told the therapist and she said that is where the centre of feelings is and asked if I had recently had a decision or turmoil to think about.I told her about my results and felt totally fine afterwards about the next step.Coincidence perhaps but I definitely feel more acceptance now(not happy exactly but Ok)
Had to go the GP for a medical cert for DHSS.Cant have one without seeing doc so sat for 20 mins in a waiting area with 15 other people coughing,sneezing and complaining,which is worrying as I am supposed to stay away from any risk of infection.I cant even stand in the corridor away from others as I cant stand for more than a few minutes.Tried holding my breath but 20 mins was a bit too long!!

Monday, 1 November 2010

Not the best of days

Went to see my oncologist today for the results of my last CT scan and echo test.My nurse rang me last week to tell me i had fluid around my lung and asked if I wanted it drained ,which I declined,and told me the scan showed concerns so was ready for some bad news.The heart echo shows the re is a reduction in the pumping due to the Sutent and there are spots in my lung and "something" on either my ovary or a lymph gland.So it is goodbye to Sutent and the trial ,thank you for the last 8 months.Have 2 weeks off (hooray)which will hopefully allow my bloods to build up and this infernal cough may go and then on to Vinorelbine,tablets again thankfully.
So on to the next stage of this lovely journey.
Fingers crossed.

Monday, 25 October 2010

So Unfair !!

I have just had an e.mail from a man I used to work with 4 years ago.i keep in touch every couple of months with 3 people from the day center where I worked with people with special needs.We worked closely with physios and OTs and one of the physio assistants died a month ago from cervical cancer,she was 31 and such a lovely person.I hate this bloody thing !!!She was far too lovely to have her life cut short like this.Rest in peace Nicola.

Monday, 11 October 2010

Coughed enough !

After weeks of coughing now and then which has built up gradually to almost constant coughing unless i lay on my tum or sit leaning forward,I rang my trial nurse.She had a chat with doctor and asked me to come to hospital for x-ray and to see doc at 3 oclock.Prof was not in today,so arrived at x-ray at 1.30,went in at 1.40 and went to see Dr. Maldi.He decided that the cause is the tumours in my chest which have increased in size and are pressing on my bronchial tubes so gave me cough suppressant medicine which i took at 4pm and i have only had 1 coughing fit since !!I have to ring Friday to let them know how i am.i really cant fault the care that i have had all through the 3 1/2 years,nothing is too much bother and I am never rushed even though the clinics are always full.I wish everyone had this level of care,I hate hearing stories where people have to put up with uncaring staff,not what you need at this point in our lives !Si gleton Hospital cancer care is definitely in the top 10.

Saturday, 9 October 2010


Well we couldnt have picked a better few days to go away,the weather was gorgeous in Stratford Upon Avon.The hotel was fabulous and the food out of this world so all in all a huge thank you to Tesco voucher scheme for the £130 per night freebie !!We went on the open top bus guide andsaw all the Shakespeare houses and had a peaceful ride on the canal.I did not take my tablets so that i would feel human and guess what ?I came out in a rash on hands an feet which on the last day turned into blisters.My daughter rang to say that our grandaughter had hand foot and mouth virus which she had kindly passed on to my daughter and me !!It is accompanied by cold like symptoms but I would not notice as these are with me practically all the time I feel as if I have walked on Stinging nettles,Ah well at least we had a good couple of days.Thankfully Ricky hasnt caught it so he is looking after me!
Bought this years Christmas Baubles for the grandchildren from the Christmas shop but couldnt decide which ones so we have baubles for 2010,2011,2012 and 2013 !!They are so gorgeous it is impossibl to choose.
Waiting to see Prof to decide what is going to happen about the tablets,constantly coughing although chest is clear so wait and see what he decides.Happy Days.

Tuesday, 28 September 2010

I remember a funny story

Thank you all for your good wishes.Shents,you reminded me of a story about my aunt and uncle.They went to Greece a few years ago and decided to hire pushbikes and go exploring.As it was absolutely baking hot my aunt felt faint and sat down to cool off and to help her do this my uncle poured his bottle of orange pop over her head.!!From nowhere came a swarm of midgies who homed in on ths sugary pop and bit the daylights out of her.A passer by stopped his truck and gave them and their bikes a ride to the doctors where she was pronounced fit but badly bitten from head to toe !!!!
It took a lot of grovelling before she spoke to my uncle again
The way to hell is paved with good intentions !!!

Monday, 27 September 2010

Itch,Itch Itch

On Saturday I wore a poloneck top as it was cooler.after gardening i changed as it was warm and my neck felt uncomfortable.By the evening a few red spots had developed on my neck which itched like crazy.I took an antihystamine and spent a wakeful night.In the morning I looke in the mirror and could not belive it !!!My neck and face were covered in red itchy spots and we were due to go to our daughter,s for their Anniversary.We cancelled that and rang the cancer ward and were told to come down in case it was a reaction to my tablets.3 hours later after many tests we left with tablets and cream.An allergic reaction to the woolen poloneck !!!Still driving me crazy but going slowly.
Went to my usual appt with the Prof,bit worried as CT scan results had not come back by Friday.He was quite taken aback by my spotty face but assured me it was not the tablets.The CT scan stated that "tumour has grown" which he was not very pleased with (nor me) as they are supposed to state the measurements of each tumour so he is going to meet with radiologist to get a more detailed result so its carry on until we meet probably next week.Hope to go back on the higher dose as the tumours shrank then but unfortunately wiped me out.No gain without pain !!!!
Had a visit from our daughter and grandchildren so cheered up lots,just have to when they are here !!!So fingers crossed again.
Have to go and wash my face in iced water to cool the itching !!

Thursday, 9 September 2010

Bad week

What a terrible week for my friends on CC !!! Tony B and David waiting for such major surgery and Caroline and Dizzie faced with such choices and huge ops.Poor Trevor has lost his battle just as he was supposed to come home and so many new frightened people joining the forum.I keep trying to think of something original to say but keep going over the same cliches.
Far too much pain and suffering for these lovely people.

Monday, 6 September 2010

What is meant to be will be

Went to see Prof Wagstaff today for usual 3 weekly check.All OK,bloods fine so he advised staying on lower dose as I still have a slight cough.I had to read and sign an updated form to carry on with the trial.When I started the trial 20 months ago I was drawn to take the usual chemo drug,capecitabine on its own and others had cape. and sutent together.I was really disappointed as  I wanted everything I could get to zap this thing and felt that I was having second best,but that was how the cards were dealt.The cape worked well for 7 months then the tumours progressed which showed that it was no longer working so I switched to the trial drug,Sutent which I am still taking 28 weeks later.2 weeks after I started Sutent the trial was withdrawn as there was no difference in the results between the cape alone and the combined drugs but as i had only had the single drug I am still being monitored.The people who took both suffered bad side effects and are back on chemo so I was actually lucky to have drawn the single drugs.Sometimes it is better to go with the flow and accept what is given to us.
Went to see our grandaughter and had a long cuddle while her parents went shopping.I can never express how grateful I am to the people fighting my corner and keeping me alive for the last 3 1/2 years.Without treatment the survival time for my type of cancer is 1 year so I reckon Im one lucky woman,I have seen 3 grandchildren thanks to them.

Sunday, 5 September 2010

Christmas is coming!!

Last year I heard of an American idea (a good one unlike party bags and such) which I started last Christmas.Every year you buy a really pretty Christmas tree bauble for your child or grandchild and put it in a keepsake box so that when they have their own home they will have beautiful decorations for their own tree. My hubby Ricky and myself will be going to Stratford upon Avon in a couple of weeks and there is a Christmas decoration shop there which is open all year and sells the most beautiful decorations so will need to buy 3 this year !
Had a cyber evening of drinks with Leonie and Caroline and Sara Friday to celebrate Leonies end of treatment,how she has suffered poor thing,and Carolines disapointing lack of results .It was really good fun. Tony B and David have such a time ahead ,things must go right for them and Dizzie.Far too much pain and worry with this horrible thing affecting the nicest of people.No rhyme or reason to it all.
Hospital tomorrow to see Prof.  Wonder what he has up his sleeve this week.Scanning machine has broken down so no scan tomorrow,just chat.
Rose xxx

Friday, 3 September 2010

Beautiful day

Started the day with a dental appt and then a visit to the school that i used to work in.No way can anyone stay down when they see the children that i used to work with,autistic,some in wheelchairs and not able to express themselves without help but able to understand that they will never be like the mainstream children.A whole lifetime not a few years of discomfort .That gave me the kick up the backside that i needed so went home and did some gardening and we went to pick blackberries,very good crop which are now cleaned and frozen for future tarts and crumbles.
My grandson started nursery today so his parents could stay as well.Thankfully he loved it and has a smashing teacher.She asked him if he has a best friend and he said yes ,my gran.Aaaaw.And he said "my sister,shes a bit of a lump to carry though ".Another milestone reached and I was here to know about it.
Really lovely sunny day,ironically the children are back in school and the sun comes out  !!
Actually bought a Christmas present today.Thats the start of it.!

Monday, 23 August 2010

Next step

Had a lovely weekend.Our son D in law and new baby came to sunday lunch and i made a lamb dinner followed by jam sponge and custard (all with sweetners as hubby is diabetic) and a bottle of fake champers to celebrate our first visit by our grandaughter.Lovely full tums and lots of baby cuddling,my idea of heaven.
Then went to hubbys cousin for a gathering of the clans.Their daughter had a firm to trace their family tree and gave it to her parents for their anniversary so all the cousins were gathered for a buffet and old time stories and photos.Really interesting and a smashing unusual prezzie.Went to bed really tired and slept for the usual 3 hours ,then awake.I have a cold and am on antibiotics for chest infection.Have had more antibiotics in the last 3 months than in the last 20 years.Because my treatment is constant my immune system is constantly being compromised.Most treatments have a week or two break to build up but not this trial.i dread to thing what state I would be in if i was not taking the Astragalus a nd cats claw.I now take vit d3 as this is reportedly good for fighting the rogue cells and 3 times a day 2 spoons cottage cheese with 1 spoon flax oil.One can but try.
Went to the hospital today as they are monitoring me weekly after my breathless episode.Prof is on hols so saw Dr Maldi,his 2nd in command.Physical exam OK and bloods back up just above borderline so carry on treatment and he asked if this was OK.i told him how I would prefer to be on the higher dose as the tumours shrank then but i was so grotty the dose had to be lowered so he said ".I would suggest you stay on the reduced dose for now but will be guided by you as it is your body and your life.You tell me what you want to do" so I opted to stay on the reduced and see what the scan shows in 2 weeks time,but it is nice to know my thoughts are considered and I am not just a trial patient.
I really must stay home more and not carry on as if there is nothing wrong with me,no wonder i catch so many bugs lately......Perhaps next week.
Time to do some cleaning.

Friday, 13 August 2010

At Last !!

Annabell final entered the world at 7 am 13/8/2010 weighing 8 lb 11 and with a mop of black hair.Mother and baby fine.
No interesting news healthwise.Back on the reduced dose for a couple of weeks and feeling OK.Have read a couple of sad posts on Cancerchat especially one from the Phillipines where a lady has cancer and is being treated by faith healers as there are no treatments available to her.We are so fortunate here.I felt really humbled reading about her and so annoyed that people have to be left like that with not even painkillers to help them.
Off to see the baby now.Lots of cuddles and blubbering.

New grandaughter


Monday, 9 August 2010

Good Result

Today I went to see my oncologist,Proffessor Wagstaff.(Love that name !! Hello,I,m Proffessor Wagstaff sounds so much better that Bert Jones )for the results of my last scan,which I already knew as the nurse rang me the minute they came in,and he was delighted that the tumours had shrunk.The largest,which is in my neck is now 4 times what it should be not 5 times.He has decided to keep me on the lower dose for next 3 weeks .The dilemma is if I stay on the lower dose the tumours are contained and stay the same size but if I have the higher dose the tumours will shrink (hopefully )but I will be totally wiped out. We shall see what happens.When I told him I had taken Penicillin as they must be told everything for the trial,for an infection in my new root filling he told me "you shouldnt have root fillings on Sunitinib".It reacts with the gums and can produce a germ that eats into the bone.I told him it is too late now so fingers crossed nothing happens.
Still waiting for our grandaughter,now 8 days overdue.Hope she will be this laid back when she is born.Her dad was a lovely baby so hopefully she will follow him.

Friday, 6 August 2010

Rose.My B.C journey

On February 2007 I was diagnosed with breast cancer.I had been to the hospital 4 times over 3 years after finding a lump and they were all cysts but this one felt different and I knew that it was going to be bad news.Biopsies were taken and I had to return 4 days later for the results which seemed endless but I now know that I was lucky as some have to wait far longer.When i saw the consultant,s face i said"Dont worry I know it is not good news and i wont fall apart"She explained what would happen and my husband and i were taken into a room with my breast nurse for a chat.That was when I started to cry because my daughter had 5 weeks of her pregnancy left and I wondered how on earth we could tell her. !!
A week later I had a bone scan and C T scan and returned to my consultant.I was told that the bone scan was clear as were my organs but that the lump was big so they wanted to try to shrink it with chemo before operating.
I saw my oncologist the following week to discuss treatment.Everything was fully explained and I was on my way!!Cant say I was overly worried.Told my children that I was to have a lump removed and that a course of chemo would be a back up in case anything was hiding.They were 26 and 24 then but I still couldn,t tell them straightaway.
I went to the clinic on 20.2.2007 and started chemo 9.3.2007Pretty speedy treatment !!
The chemo was AC and for the first 3 weeks the only side effect was sore eyes and some tirednessAfter the next course my hair started to come out.The shower looked as if a yeti had been showering and every morning my pillow was covered in hair.It is amazing how much hair we have when it falls out strand by strand.Soon got fed up of this and shaved it off.I had been given a voucher for a wig and had one ready It looked better than my own hair !All ear wax disappeared and so did the natural lubrication when opening bowels.Like trying to pass coal even though not constipated.Absolute agony and the worse side effect of all my treatments.After 12 weeks a scan showed that the AC hadnt worked very well for me so changed to Docetaxel for 12 weeks.Very tired and joints aching
Spent a lot of time cuddling my new grandson so didnt feel too uselessThe school where I worked were fabulous and I visited regularly
Towards the end white cell count very low so had injections to boost them and finally came limping across the finish line ,very bald, (I had hoped to look like Sinead O Connor but looked more like Matt Lucas from Little Britain ).,very weak and very guilty for making my family worry so much.I could barely walk across the room and had to sit down twice if I climbed the stairs but it was time for the op.
On the 9th of August I went to Prince Phillip hospital for a mastectomy,17 lymph nodes removed from under my arm and a lift on the other side to match them up.All went well and the week in hospital was great thanks to a great bunch of ladies on the ward.We had a laugh and joked about it all and the staff told us we were the best 8 people they had seen .The hospital was lovely and spotlessly clean and after a week I came home to be spoilt by my lovely husband and family.
The wounds healed well (I put Manuka honey on them every day)and I was up and about in no time.
In November I started another 3 months of chemo to zap any stray cells.This time it was Carboplatin and Paclitaxel.Usual extremely tired,spaced out feeling but unable to sleep for more than 3 hours at a time.Aching joints and sore eyes and generally had enough but so very gratefull.lot of problems with low blood counts at the end.Definitely a case of if the cancer doesnt get you the treatment will!!
The day came when I had my last chemo.Some of my poor veins had collapsed so it was the last of the digging around looking for a good vein,thankfully the nurses were the best and were always so gentle.
End of chemo and I DIDNT WANT TO FINISH.This was my crutch .I was safe here !
4 weeks off then 5 weeks of radiotherapy.Every day with weekends off for good behaviour.The worse part of it was looking for a parking space every day !No real side effects except the ever present tiredness then it was all over. 14 months of treatment,sounds so quick when you say it out loud.
Now it was time to get back to hair started to grow,all grey and curly .and I started to get my strength back.Went back to work in June and again the school were marvellous.
Had my reconstruction in August and it went well.Again the Manuka honey to help the healing.
My daughter was getting married in Sept in Cyprus and 18 of us were going out so I had lots to keep me busy,looking for wedding outfits for my hubby and myself and Debbies wedding dress.I still had bouts of tiredness but felt OK. and my grandson kept me busy.
A month before the trip my husband went to hospital as he has bad circulation in his feet and they decided he needed a quadruple heart bypass !Travel was now out of the question and we were all devastated that he would not be able to walk our daughter down the aisle.She wanted to cancel the holiday but everyone would loose their money.I wanted to see her at her wedding but did not want to leave my husband.It was a terrible time.His surgeon decided it for us by telling me that my hubby was worrying about me missing the wedding so much that it was not helping his health and as he was already in hospital he would be looked after.So reluctantly I went and he phoned during the reception and we all cried .I have seen less crying at funerals !But it all went to plan and we came back to help him recover.
We thought "thats it. we have had enough illness now"
In November 2008 I felt a swollen gland in my neck.It was still swollen a week later even though I did not have a sore throat or any other symptoms.Again I knew something was not right so I went to my GP who said he did not think it was anything to worry about and we would watch this space.I rang the hospital and was told to go there the next day and my consultant took some fluid form the gland and took it in person to the lab as he did not want me worrying !!Lovely man.I returned the next day and it was confirmed that the cancer had returned after 9 months.My husband was worse than me .So I said "right how do I beat this ".
Back to bone scans and Ct scan and off to see oncologist .The scans showed that I had multiple infected lymph nodes in my neck and chest and would need chemo to contain it but that it could not be cured.Again the agony of telling family and playing it down and my daughter was pregnant again. They have said they are not going to have any more children because each time they are pregnant i have cancer !!
I was thrilled when the oncologist recommended oral chemo, and asked if I wanted to join a trial.Started on Capecitabine which worked for 15 months.No hair loss which was great but very sore hands and feet and the old tiredness.Started using Astragalus and Cats claw and bloods have stayed OK apart from when I stop taking them and then the blood counts dropWhen this stopped working I started the trial drug.Have had some nasty side effects but as I am monitored so closely they are sorted quickly.My scan last week (August 2010) shows that all tumours have shrunk so fingers crossed it will continue to work.
It is not a chemotherapy drug which poison the cells but it stops the blood vessels from providing oxygen to the cancer cells.Hopefully this will soon be available to others when the trial results are finalised.
During this time I found the Cancer chat forum and cannot begin to describe what a blessing it has been.Reading other stories and talking to regulars who become friends is worth the world.No-one can really understand unless they have been there.
My gorgeous grandson,Harry is now 3 and Eleri is 8 months and we are currently waiting for my new grandaughter to enter the world,3 wonderful reasons to win the fight.