Thanks for taking the time to visit my website. I'd like to tell you a little bit about myself. I'm a wife and mother of 3 young children, Matthew 13, Ellie 10 and Freddie 6. I was first diagnosed with Breast Cancer in 2001 at the age of 36. Following Chemotherapy and Radiotherapy, I was in remission until a chance MRI scan in Feb 2005 for an unrelated problem, detected that the Cancer had returned. I was then diagnosed with Secondary Breast Cancer. The likely prognosis given in February was 18 months to 5 years. I then had to undergo aggressive Chemotherapy, but following the results of a recent bone scan, it was found that the Cancer is still spreading.
The treatment in Germany will cost thousands of pounds and for most people like myself, the opportunity for this is a dream. Many of my Family and Friends want to make this dream a reality and are making tremendous fund raising efforts, because without them, I would not be able to seek the treatment that I so obviously need and which is not being offered in this country.
General Aches and Pains
I’ve been feeling really tired lately and my joints have been aching excessively, especially my right knee and left shoulder. I feel like an old woman. When I told Dr Jacob about these aches and pains a couple of weeks ago, she suggested Magnesium Oratate. I have been taking Magnesium Citrate and I’m not really feeling any better for it. I need to ask whether it has to be Oratate, Citrate or Oxide. So much to choose from!
The tips of my fingers have also been very dry and the skin is starting to crack which has been getting quite painful. I think there may be a connection between not continuing with the Alpha Lipoic Acid which I ran out of 2 weeks ago and my sore fingers. Have therefore ordered some more.
Since the article appeared in the Evening Post yesterday, I’ve had a few emails to the Wigs to Wishes website from fellow sufferers and well wishers.
Reading Evening Post article
Reading Evening Post article appears, “Read my blog on living with cancer”.
Woke up feeling a little ill today and also my toes are looking very sore and infected. Went to see my GP and got some antibiotics. She said that I may have an ingrown toe nail and if the antibiotics don’t clear this up I will need to go back and see about having some of the toenail cut. I also spoke with the GP about the fact that I am missing some scan results from my Medical Records and have tried contacting the Medical Records Dept without much success. She was able to print out a copy of the scan results from a central database. Talk about 1st class service, unlike the Medical Records Dept.
The scan result did give some shocking reading. When I went to see my Oncologist back in August 05 to get these results she said that there had been a slight increase in the disease but from this scan report it appears that it was more extensive than I was told.
Dawn Mcgowan kindly hosted a coffee morning today and raised £217. Fantastic. My thanks go to Dawn and everyone that came along and contributed. As I’m partial to chocolate cake, Carly's cake was particularly nice.
The live phone-in with Radio Berkshire went without a hitch. However, if you asked me what he asked me and exactly what I said, I can’t for the life of me remember! It was all a blur!! The funny thing was, I didn’t tell the kids I was doing it and they were still in bed when it was all going on. I was just hoping that they didn’t get up and burst into kitchen shouting out “can I have Shreddies for breakfast please”.
Reading Evening Post also rang me this afternoon to confirm that an article about my Diary would be published in the paper next week and that a photographer would be coming round to take a photo.
Live phone-in with Radio Berkshire
Radio Berkshire contacted me at work today and asked if I would be interested in having a chat with Andrew Peach (the morning slot presenter) live on air about my current travels to Germany. I agreed, a little reluctantly as I thought this could end up being a bit embarrassing if I got too nervous. Anyway they are going to ring me at 8am tomorrow for the live phone in. In for a penny, in for a pound!!
The balls of my feet appear to be okay at the moment so maybe the increased Ginkgo is helping. Unfortunately my toes are still sore though.
Updating the UK Oncologist
Clinic appointment. Dr Barrett is back from her travels. I passed on copies of the treatment plan, and the treatment received at the Leonardis during my last visit. I also gave her a copy of the disk with the PET scan results. Unfortunately my Onc did not comment on the PET scan and Bone scan results and I can only assume that she cannot give her judgement on treatments received outside the RBH.
Completed a form for a Lymphoedema referral so hopefully will get a date through soon for some lymphoedema massage.
Had Herceptin and Pamidronate infusions today and started on my 5th cycle of Xeloda.
Bone scan results look good
Had a bone scan today, the Consultant says that there is less tumour in the pelvis than when he scanned me in October and that there is an overall reduction in the spine.
Saw Dr Jacob this afternoon and she said that this is a good result and would like me to come out again on 8th March for some more Samarium treatment to try and destroy more of the tumours. She also said that they are awaiting test results from the chemosensitivity test. I discussed with her the subject of being on chemotherapy and having the Samarium. The RBH are not keen to continue with chemotherapy when I have Samarium because this can cause a dramatic reduction in my white blood cells and therefore leave me open to infection. Dr Jacob agreed that this is a problem but has suggested that I carry on with the Xeloda until the results of the chemosensitivity test are known and the situation will be reviewed then.
She asked if I had any problems and I mentioned the hand and foot syndrome, she suggested increasing the dosage of Ginkgo Biloba from 120mg per day to 240mg per day. I also mentioned the aching joints and muscles, again she suggested Magnesium Oratate. Another problem I have been experiencing is lymphodaema in my right arm. She said that I would need a lymph massage by a professional lymphodaema nurse. I’ll have to arrange this on Friday when I go for my next clinic appointment at the RBH. As usual I was given 2 sheets of information from Dr Jacob which highlights the treatment that I have received at the Leonardis Klinik during this visit and all their proposals for future treatment including a treatment plan.
Flew out to the Leonardis Klinik with Zoe yesterday for 4th visit. Had lots of blood taken which will be sent off for various tests including the chemosensitivity test.
Had a PET scan today, which was very encouraging. The cancer in the lymph nodes in my chest has completely gone. There is a reduction of the tumours in my spine but the tumour in my pelvis appears to have changed. On the whole, the situation is better. I even got to bring home a copy of the scan on disk.
Rang the family to update them on the good news today. Was told that the Daily Mail article didn’t appear but was apparently featured on their website.
Spoke to the Daily Mail yesterday at length regarding a campaign that Breast Cancer Care are launching on Monday called “Prescriptions for Change”. It all started when I completed an online questionnaire, which was asking for cancer patient’s experiences and thoughts regarding the payment of prescriptions. Following on from this, I was asked if I would help out with media work in my local area. The Daily Mail were interested in the story and Breast Cancer Care asked if I would speak with them. The Health Editor rang me yesterday and said that they would send out a photographer tomorrow to take pictures of myself and the family to go in Monday’s edition. She did however point out that it may not get published if other high profile stories were generating more newsworthy interest. The photographer came and took about 20 shots.
Back in November I requested a copy of my Medical Records from 2001 to present day, which cost me £50 for the privilege. They duly arrived during December and it has taken me until now to have a good look through them. Unfortunately, I’ve noticed that they are incomplete. The results from the July 05 Bone Scan appear to be missing so I’ve contacted the Medical Records Department and left a message on an answer machine in the hope that they may be able to throw some light on the missing documents.