Further to my previous post 2 or 3 weeks ago, we have had our 1st appt with consultant now & PET scan. Consultant told us blood tests & CT did indicate malignancy & said bone marrow was involved. She also stated that due to the mistakes & delays in diagnosis that have previously happened it was urgent now to move forward. A PET scan was done within 2 days & Macmillan nurse has phoned & told us they have results & radiologist & consultant are at present working out where & which is best to biopsy for best results, what this actually indicates, we don't know. As with everyone the waitingbis agony. Nurse said she couldn't discuss any further medical issues in detail over the phone, but, said my son that he would be coming to them very soon for a long course of treatments.
Consultant advised that relocating my son to be close to family was wise & the best course of action but not to do this until after grading & staging. So, we're still in a certain state of flux, still in shock & uncertain what the coming months will bring. How does everyone cope with life turning on its head ?
Hi again Modge the rollercoaster of diagnosis is a very challenging part of the journey. Diagnosis can often not be straightforward and there is no text book that tells us how to deal with this period….. Back in 1999 I experienced the same problems and it took over a year and 6 biopsies to get clear pathology to identify my type of rare NHL…… but here I am, over 23 years on and I am doing well.
Basically at this point in time you are all passengers on the journey and you have to take each day as it comes and trust in the system that it will move this in the best and most effective direction.
Biopsy is the main tool to identify what type of Lymphoma this is and helps the staging…… this then points towards the best treatment and for how long.
My initial chemotherapy lasted for over 4 months with my treatment requiring me to be in hospital for 5 nights/6 days for my 6 cycles on my IV 24/7,,,,,,, but most chemo regimes are done as out patents……. as time goes on it will be come more demanding so him moving closer to you would be wise.
I also went on to have further treatment including Radiotherapy and Stem Cell Transplant so in total my treatment took over 2 years with along recovery…… but again I repeat I am living a great life.
The side effects all depends on what treatment he has….. I had over 750 hrs of very strong chemo during my initial chemo and I have to say that I did ok with it. I went into treatment in a very bad way but there was a very quick and positive effects on my condition and my overall wellbeing, it’s was rather amazing.
As to benefits, I was the same. Living with and being treated for cancer comes with a financial cost….. so he gets as much out of the system as he can.
He needs guidance as to what us available…… I had great help from one of our (Macmillan) benefits advisers who was in the hospital Macmillan support unit. He can also call the Macmillan Support Line is open from 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00 and talk with our benefits/financial guidance team.
