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.
Julie from Winston's Wish
Ricochet came to film again today. This time they brought Julie Stokes along. She is an extremely lovely lady who runs a charity called Winstons Wish who support parents or carers of children who have lost a close family member. Whether the death was sudden or expected, they work closely with children and families, in a variety of practical and creative ways, to create an atmosphere where they can share their thoughts and feelings and meet others. In this particular instance Julie has been brought on board to help the families involved in the documentary through difficult times and to help us create memory boxes and "mummy manuals".
Julie spent the majority of the day talking with me and Steve before the children came home from school and then she met Matt, Ellie and Freddie. She gave Ellie and Freddie some wonderful gifts which are going to help with their separation from me when I'm off to Germany or at any other time, possibly a hospital stay. They were each given a large teddy and small teddy. The large teddy was for themselves and the small teddy was to be given to me when I go away. They named the large teddies Mummy and the small teddies are Ellie and Freddie. Julie spent some time with the kids tentively asking them questions about how they felt about my illness. They created a time line of events as they saw it. It was really interesting to see the results of this as there were a few surprises for Steve and I. It was interesting to see how the kids thought of different events and how they tied in with my illness and that they said that they haven't really seen me cry, well other than when Princess Diana died! I suppose I do hide my feelings quite a lot, not just from the kids but from most other people also. I think it is my way of coping and that if I leave myself open to these feelings, I'll find it really hard to be positive. Julie was very instrumental in helping me recognise this.
The kids have been given memory boxes to fill with lots of memorabilia and I'm going to put labels on them explaining what they mean to me. I've also been given a diary of sorts to put some little tips down for Steve to help him if I'm not around. This will be a laugh. For instance putting the toilet seat down as Ellie will be the only female in the house, or how much rice to cook per person, Steve is always forgetting!! Oh yeah, how about remembering to collect them from school or even better not losing them in a shop!!!
Discussion with UK Onc
Saw UK Onc today. Gave her copies of the treatment plan suggested by Dr Jacob. UK Onc is happy to proceed as suggested by the German Onc. However she has said that one of the chemo’s suggested by Dr Jacob has not been clinically proven to be effective in the fight against Breast Cancer and therefore she would only be happy to prescribe Navelbine. I need to inform Dr Jacob of this information as I know from my last Chemo Sensitivity test, Gemcitabine came up as an effective chemo.
UK Onc has also said that it will be good to have a rest from the chemo as we have to be careful not to damage the bone marrow and therefore if there is only a slight increase in the cancer in September, she would prefer to start back on the Herceptin 1st before giving more chemo. She said there is always a danger that the chemo will kill you before the cancer does and the longer the break between chemos, the longer the survival rate! I think she is also saying that we could end up running out of options and then there won't be any chemos left to use!
Had the pamidronate today and had my line removed. Still no fixed date yet for the insertion of the new Port. The clinic nurse ripped off the sticky dressing from my arm and took half the skin with it! It was really painful and looks extremely sore. I’m glad the line is now out, at least I can shower without the arm cover and I can start going swimming.
6th Leonardis Klinik visit
Well, I've had the bone scan this afternoon and I am disappointed with the results. Although there has not been any more spread, the picture remains the same as before. Dr Jacob (the German Onc) is also disappointed and has said that it is looking a little tougher than we first thought. She is however, still confident that we can over come this. She is in complete agreement with the RBH that I should stop the chemo due to the increasing number of side effects (she said that there were increasingly more side effects from the Capecitabine chemo than good effects) and she has also said that I must stop the Herceptin!! Bit shocking but she feels that it is not doing anything at this moment in time and I should have a break from it. She thinks that as with lots of drugs, the body can become immune but by having a break from it at this stage, it may be that I will be able to start it again at a later date.
I shall have to return to the Leonardis in September for a PET scan and possibly another Bone Scan. If there is disease progression then I will have to start another course of chemo (different to the one I've just finished - Gemcitabine or Navelbine). I will also be having another Bone Marrow Puncture. Dr Jacob feels that my body needs to recover from the effects of the chemo before continuing with any more treatment.