As some of you may have noticed, I've had a week or so break from the forum and not been as generally active as before. Firstly I've been away this last week and deliberately didn't look at the forum while away!
The reason for this is that I've had to deal with complications and a few lots of bad news regarding my own situation.
Last November I discovered that I again have tumours growing in my lungs, what with huge mix ups between hospitals, overworked staff and bad communication I didn't start chemo when hoped and indeed will only start it again in May. In January as some of you may know, I caught the noro virus, which resulted with me passing out unconcious in my bathroom (twice), injuring my head and breaking most of my ribs on both sides. While in hospital I had to have a routine head scan because I'd been unconcious due to a head injury, it was then found that I had a mass in my brain, told to me in the corridor by an inexperienced junior doctor, you can imagine the impact this had on me. It was a few days and an MRI scan before I was told that it was a benign tumour that has possibly been there years, but because of this I can no longer have Avastin as part of my treatment and because when my tumours were K-RASS tested they were found to be mutant, my options for treatment have been narrowed even more. Yes, I'm glad the tumour is benign, but it is still a blow. I then saw a specialist about my lung tumours who assured me that he could operate successfully and remove the offending b*gg**s. I was ecstatic, things were beginning to look hopeful, but then 4 days later I recieved a letter from him saying that on further discussion with his team, they had decided that surgery was not a feasible option and that surgery was cancelled. Yet another blow to my morale and more annoyance that as chemo had still not started the b*gg**s were still growing. Through all this and over the last 11 months I have had ongoing problems with my stoma, it blocks completely putting me in agony for hours and resigning me to bed for the day, meaning I have to cancel all appointments etc at very short notice as I have no advanced warning of it happening, I have even ended up in A&E twice and hospitalised once. Anyway 2 weeks ago my surgeon operated laprascopically to find the problem and has released the 'band' around my stoma (I think this is the opening in the stomach wall where the stoma passes through). Touch wood, there has been no problems since surgery and I am sure the op has been successful! The day before surgery however, I was asked by my surgeon to come into hospital as he needed to speak to me........ never the best news. He told me that the result of a PET scan I'd had for my lung tumours also now showed that the cancer had spread to my bones, in particular my hip and ribs were involved. No need to tell you how I felt, just completely gutted. A bone scan was ordered for the next Thursday and I also had a meeting booked with my oncologist for the day before. My meeting with my onco was for 1.30pm, I was finally seen, by a very harassed and tired oncologist who had worked without a break or lunch since 9am that morningat 6.30pm. Chemo was finalised, bone mets discussed and decided that it would start ASAP. Thursday and my bone scan dawned and received the news that my chemo would start on May 3rd, so I phoned my husband and told him to book the next week off work, I had decided that we had a window in which to take a break and that I definitely needed to get away from the phone, hospital and computer! So that night I booked us into a pub in Suffolk for B&B and 2 days later on the Saturday we were off! We loved Suffolk, moved on to the Cotswolds on Tuesday for 2 rainy days and finally down to sunny Bognor Regis for another couple of days. While in the Cotswolds, with the rain coming down in stair rods, my CNS nurse rang me with the news that the bone scan confirmed that there was NO spread to my bones, only damage and new growth showing up from the breaks to my ribs and the start of osteoperosis in my hip! Never have I been so glad to be told such news.
So hopefully you will now understand my 'quietness' on the forum over the last few weeks. I have bounced back again and hope to continue to imput into the forum. It just goes to show that these sophisticated machines and technology, do not always give accurate results. My emotions over the last few weeks have been on one hell of a roller coaster ride. I've had help with this from people here at BBC and friends and family at home, you all know who you are and I thank you from the bottom of my heart, I will not forget!
Thanks for reading and to everyone out there, don't ever give up, you will get there in the end!
Best wishes, Alison