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.