There's a Panda in my Bellybutton

Oral Mass Ryan woke up on Monday 11 September 2017 and told me he had a mouth ulcer. As soon as he showed me I knew it was not an ulcer, I knew his lymphoma is back. We had an appointment with his oncologist at the clinic the following day. The consultant, Dr A, agreed it needed a biopsy. He photographed the mass and emailed our oncology team in Cardiff from the treatment room at Carmarthen hospital. Dr A also advised me that my dentist see the oral mass as it was my dentist that first noticed the original changes the previous year. My dentist was thankful we had been to see him and to keep him in the loop of developments. He agreed the new mass was looking pretty awful. We were admitted to Cardiff hospital the following day for another biopsy. Our oncology team were open and honest that it was their belief Ryan had relapsed but obviously we had to wait for the biopsy results to confirm the diagnosis. We were initially advised that we would be discharged on watch and wait and that

Adrenal Insufficiency Ryan's lymphoma is being driven by the Epstein-Barr Virus (EBV) which causes glandular fever. The EBV invaded his T-cells whilst he had Glandular Fever and turned them cancerous causing dysplastic lymph cells to grow in his throat resulting in a soft tissue tumour forming. The good news at the start of chemotherapy cycle 4 was that his EBV plasma readings had come back as zero for the second month, which tells us that no more cancerous cells are being made in his bone marrow.  There are still EBV cells in his blood so hopefully, this cycle and next 2 cycles will finish killing off the cancer cells that are still in his blood. Ry will be given remission status when the EBV plasma has been zero for 6 months and still faces at least two years of maintenance ahead after the six chemo cycles have finished.  The week of SMILE chemotherapy went well although he had some impressive fluid retention on day 4. This can be a sign that the kidneys are not working as well a

Nutrition and Hydration To coincide with National Nutrition and Hydration week, I thought it would be good to share with you Ryan’s experience of malnutrition as a result of his lymphoma diagnosis. Malnutrition is a common problem among patients with cancer, affecting up to 85% of patients with certain cancers. In severe cases, malnutrition can progress to cachexia, a specific form of malnutrition characterised by loss of lean body mass, muscle wasting, and impaired immune, physical and mental function. Cancer cachexia is also associated with poor response to therapy, increased susceptibility to treatment-related adverse events, as well as poor outcome and quality of life. Cancer cachexia is a complex, multifactorial syndrome, which is thought to result from the actions of both host and tumour-derived factors, including cytokines involved in a systemic inflammatory response to a tumour. Early intervention with nutritional supplementation has been shown to halt malnutrition and may

A very surreal day was had on Thursday 22 September 2016, when Ryan spent a day at Velindre Cancer Centre, Cardiff in their Mould Room where he had his personal mask made for his impending 5-week course of radiotherapy (RT). Ryan then had to endure another CT scan to mark the mask up for the lasers to do their thing. He will be having 50gy in 25 fractions. One session every day Monday to Friday for 5 weeks on lymph tissue in his tonsil and throat areas.  Side effects will be his ability to swallow. Loss of taste buds. Salivary glands dry up, sickness and extreme fatigue, all of which will begin around 2 weeks into the treatment and last for 3-6 weeks after treatment has finished.  He is also having RT first and then Chemotherapy which I understand is usually the other way around so not clear on why the change is happening. I believe it is because he is not well enough to begin IV chemo and has been on steroid chemo up to now in an attempt to build him up a bit, but I do not see that

Peritonitis Wednesday 23 November 2016 saw Ryan's first check-up with the GP nurse since being discharged after his emergency surgery, which is a whole other story that I will tell in a separate post titled  Peritonitis .  On the way to the GP surgery in the car , Ryan begins a conversation and it goes something like this: Cancer Sucks Me: You need to write us a blog post-Ryan about your cancer, can we do that? Ry: Cancer sucks, don't get it! Me: That's it? That's your advice for anyone reading our blog. I doubt anyone reading this is actually looking for ways to get cancer. Ry: I had so many problems growing up, trying to cope with my autism and now this lymphoma thing. I haven't been a very good child , have I? Me: Don't ever say that. You are perfectly awesome. You have been dealt a poor hand of cards, I won't lie and you need to bluff your way through. Ry: I know what you mean mum. I am going all-in on a high card. How amazing is this  15-year-