The World Begins Again in 2022

Saturday 1 Jan. Am feeling slightly better with Covid. Definitely turned a corner. What a **** start to the year. Thank goodness for the horse tranquillisers or whatever I was prescribed. 

Tuesday 4 Jan. Self isolation can end tomorrow. 

Saturday 15 January. So, I have gone and bought myself a cheap 2nd hand flute from an eBay Charity auction for £36 including postage. A new challenge for this year. 

Thursday 27 January. I have also set myself the challenge of learning and performing the solo of Gabriel's Oboe (for Clarinet) for the Band. I am so excited for this opportunity. 

Thursday 3 February. Ryan had his 18 month review check up today. All is good and well. I never dreamed we would get to this stage. 

Sunday 27 March. I did it. I played my solo for the first time at the Mother's Day concert at the National Botanic Garden of Wales. I am so proud of my little self. What an achievement. 

Sunday 8 May. Played with LTB at the Church Civic Service for the Mayor. It is so good to be playing regularly again. What a difference to a year ago. 

Saturday 28 May. OMG! I am the proud owner of a refurbished Buffet RC Greenline professional Clarinet. I never in my wildest dreams thought that I would own an intermediate level let alone pro level instrument. It was a steal of a price and Dunk said I deserved it after all the work I have, and am putting into my playing. Especially now I even perform a solo piece. 

I knew as soon as I tried it that it was different to my Prodige. It has a warm, rich sound with smooth, free blowing responsiveness. I played the E13 as well as it was also in my price range and IMO the Greenline sounds as good as the full wood but I can't offer an opinion on a direct calibre comparison. One other thing I did also notice as I played the RC is that it is slightly heavier than my student model so I weighed them both and the RC is 100g heavier.

Friday 3 June. Played with LTB for the Queen's Platinum Jubilee. My goodness it was a warm day with no shade. Surprisingly our instruments didn't melt. 

Saturday 4 June. Played with Band for Parti in the Parc which became party in the Church due to crazy windy weather. It was so lovely to see the Church being used by the whole community. 

Friday 15 July. So I had a mini breakdown at Band today. I have been really struggling to adjust to wearing my new denture plate that was fitted in June to replace two upper back teeth that had been removed. It feels so strange and is taking some serious getting used to. I am really struggling to play Clarinet too. I was so upset and frustrated but on of the Saxophone players, suggested I try going down a reed strength. I never even considered that idea. a friend had a number 2 reed spare and let me have that. Well boom. I can play again. I can't believe it was such an easy fix. Now to buy some new reeds. 

Thursday 4 August. Ryan 2 years in Remission. I can't quite believe it. 

Life Almost Comes to a Screeching Halt...

Tuesday 4 October. Ryan mentioned to me today about an Ulcer on the roof of his mouth. I have taken photos and will monitor for a couple of weeks before we start to panic too much. 

Thursday 27 October. Travelled up to the Midlands to stay with my sister and to go to see Marti Pellow. Well in fact MEET Marti Pellow because we only went and got VIP backstage tickets to have a photo together with him at 35+ years of support. Omg what a day. What an experience. 

BUT and it is a humongous BUT because I had this once in a lifetime ticket. Duncan had to take Ryan to Cardiff Dental Hospital for a Biopsy on the ulcerated mass on the roof of his mouth. I had emailed photos to his consultant on Tuesday 25 October as it hasn't healed and she agreed it needs further investigation. Are we really going through this shit again ❔️❔️❔️

3 weeks ago Ryan mentioned he had developed an ulcer on the roof of his mouth. It isn't healing. I have been taking weekly photos and liaising with his consultant by email and phone. She agreed on Tuesday that it now needs further investigations hence the appointment today. He has full EBV PCR bloods done again today at TCT then onto the Dental hospital at UHW where photographs were taken by the Maxillofacial surgeons who then did the biopsy. The ulcerated mass is on the junction of his soft and hard palate. 

Ryan has a follow up appointment with the MaxFax team on 11.11.22 to discuss the results and then on to see his oncologist. Ry has two stitches and cannot eat any hot food for 24 hours. We have stocked up on ice cream. He has taken some paracetamol and gone to bed as the local anaesthetic is now wearing off and he is struggling to speak.

Sunday 30 October. With everything going on we have decided not to book anything for Ryan's 21st birthday. Ryan really doesn't want to do anything and no fuss. He has agreed to a family pizza takeout with just us family of five. 

Friday 11 November. Home from Cardiff for his Biopsy follow up with the MaxFax team at the Dental Hospital.  No confirmed diagnosis as yet. The biopsy has had to go for Immuno-histo-chemisty (IHC) testing as the cells are showing "basal changes" that is in keeping with NKTCell Lymphoma but as the EBV blood test was negative they want to check other types of cancer before they "call" (his words) a firm diagnosis. 

The IHC results are due back next Wednesday (16th) and there is a Multidisciplinary Team (MDT) Meeting scheduled on Wednesday to discuss treatment options/plans. 

The reason they wanted to keep today's appointment is because they wanted some further photographs to compare growth and changes. Ryan's oncologist is going to ring me on Wednesday after the MDT meeting.

Sunday 13 November. Marched with LTB for the Remembrance Day parade. It was a barmy 18C IN NOVEMBER. It was an honour to play Men of Harlech through the streets of. Although I didn't appreciate how hard it is to play and march at the same time. Certainly an experience and I hope we get to do it again next year. 

Wednesday 16 November. No phone call received from Ryan's consultant as expected. We have however had a call from the PET scan department at Cardiff hospital confirming an appointment for Friday 18 Nov at 12:30 pm. PET scans are done in confirmed cases of cancer to determine how far the cancer has spread. So I have emailed Ryan's Lymphoma nurse, Faye to ask as there are still no confirmed biopsy results, is this scan to help make a diagnosis or to stage or both? 

Friday 18 November. Only just made it back from Ryan's PET Scan in Cardiff to get up to town to play for the Festival of Senses Christmas lights switch on. Goodness me it was cold. 

Incredible News...

Wednesday 23 November. *Incredible News*

Ryan's oncologist has just called. They finally had the MDT meeting today to discuss all the results from the 2 biopsies, blood tests and PET Scan.

Ryan has *NOT* relapsed. There is *NO* sign of any cancer.  

The first biopsy showed cell changes which caused the confusion and there have been extensive further tests done that show there is cell reaction and inflammation happening which the PET scan also confirms but they don't know why. Not a clue. The MaxFax team were convinced it was Lymphoma as were we.  

Ryan is now being referred back to the Maxillofacial team at Cardiff as they are interested in trying to establish what is going on. Another medical marvel of uniqueness to baffle the experts and his consultant has asked to be kept in the loop too. 

Ryan however is not as elated as us. He said "well if it isn't cancer what is it?" and when I tried to explain he then said... "it isn't cancer yet". 

BUT that is Ry. He needs time to process and never gets particularly excited. Autism is very black and white. No grey and this is grey. 

The team at Cardiff are still concerned as it isn't painful and quite an area of 'diseased' skin in his soft palate area so still some question marks as it can't really be left as is. If that makes sense. 

I am of the opinion though it doesn't matter what it is. It isn't a relapse. 💕

Saturday 10 December. We busked in town in -5.5C weather. Oh my days it was so cold my left hand C# key froze and would not work. In the evening we played for a local village Christmas Lights switch on and thankfully were in the warm village hall with free mulled cider.

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