Hi, I haven’t blogged for a while and since this week is a ‘biggie’ for me I thought I would pop down some words. For those of you who don’t know me I have secondary breast cancer with spread to organs and bones. I have had loads of different treatments but have been on a treatment break while things were stable since March after I completed some palliative radiotherapy to my Mediasternum and Hip.
I was on Zometa to strengthen my bones and reduce bone pain but that was stopped as I have been getting numbness and tingling in my jaw – a rare side effect but of course I have to get it – hopefully I stopped it before it did too much damage. I am on pain killers to dull the pain which are working well at the minute. I go back to see the Dental hospital on the 18th to see whether they will remove a wisdom tooth or not – this can be risky and I am not sure whether I will agree or not! My bone pain has been getting gradually worse since stopping the Zometa.
Anyway I hurt my back while on holiday in Brussels staying with my brother and family in August and my Liver is now quite swollen and causing me some pain (understatement LOL) so I have been looking into what I can do next treatment wise. I have had to see my GP to get my pain meds altered and he was very helpful and even changed my steroids to see if it makes me any less ‘snappy’ with the kids LOL !! Anyway they seem to be helping and I can manage to stand up and sit down without holding on to anything now so that has to be an improvement!!
Sometime ago I looked on the Cancer Research UK website and looked at all the trials on offer, I identified one that I might be eligible for and saw my consultant who organised an appointment with the professor in charge. I went to see her but because my genetic fault on the BRACA 1 gene is not the ‘full mutation’ she wasn’t keen for me to go ahead. However events happened and my uncle died very suddenly of undiagnosed pancreatic cancer (which has links to breast and prostate cancer) and so she sent me back to genetics at the Centre for Life at Newcastle. I saw the senior Geneticist there who reviewed my family history more thoroughly and she said that there is a new way for them to test for BRCA 1 and 2 which will be used in the next 6-12 months and she took more blood for that test – she thinks I will show as having the full BRCA1 mutation on the new test – watch this space! Anyway she said she would write to the professor and recommend that I should be put on the trial. By the way the trial is gene therapy not chemotherapy and involves 5 days of I.V. drips as an outpatient and then 2 weeks off. I have an appointment to back to see the professor on Thursday – in the meantime I was worried that my Liver is so big (I have Liver tumours which are obviously growing) and so I rang to speak to the chemo unit. They have made an appointment for me to sign up for chemo (Carboplatin probably) on Wed with my oncologist (day before I see the professor) and then if the professor says I can do the trial then chemo will be shelved for the meantime. Phew.
So I am facing a big week, Jade is back to school tomorrow and I have just dyed her hair for her (why my lovely blonde daughter wants to be chocolate brown is beyond me but.....)! Jenny begins college tomorrow and is on the course she wanted. I have had the whole summer off treatment but I think I am a bit scared now that I have left things a bit too long so I am hoping by the week of the 14th I have appointments to begin either the trial or chemo. Pippin the wonder dog is going for a bath and haircut on Tuesday so it is a busy week LOL. I have two weekends planned in October – am going back to the cosy cottage with my friends from university and then am off to a What Now member’s birthday party another weekend – more things to look forward to and keep me going!
Well that is me hope you are all ok, Love Jools xxxx
