The marvellous NHS

My hematologist, Mr Stewart,  phoned me at home last night to check what had happened at the respiratory clinic. I was really reassured and touched by his concern, especially as he told me that the CT scan from last week had showed no sign of the lymphoma. I am booked in tomorrow for the biopsy on the lump on my back, and Monday for a broncoscopy to test my lung to see what exactly is causing the pneumonia. The  respiratory consultant thinks it will be one of two things - an infection that can be treated with antibiotics, or an 'organising' pneumonia - an autoimmune problem that can be treated with steroids (my old friend prednisolone).
My treatment under the NHS at the UHNS has been exceptional and I'm very grateful. But to be called at home to update me on results and check on progress is above the call of duty.

No more Rituximab

Keith came with me to the clinic today as there were a few things we've both been worried about. I've still got the cough but now started with night sweats and found a strange lump on my back, so they are sending me for another CT scan that will check what's happening with my chest and cough, the lump, and  to see if any of the internal lymph are swollen. I've also got some new cough medicine! Just looking back at the history, I can see that the cough has had a serious impact on my year - so many days where I was tired from lack of sleep, feverish, or got painful pulled muscles in my ribs. It's been gradually getting worse over the months, so I'm glad there is to be more investigation.

I was worried that the last two doses of Rituximab would give me an extra 4 months guaranteed remission, but apparently, the 12 doses over 2 years is an arbitrary figure, not evidence-based. So now I'm officially in remission which means that the lymphoma is not active, and hopefully it will stay that way for a very long time! I was in remission for 25 years last time, so I plan for at least the same. Although there is no clear evidence for what causes lymphoma, it is on the increase in developed countries and there is some evidence that suggests that farm pesticides and hair dye may be connected so over the last few months I've been adjusting my lifestyle to minimise the things that may be associated with lymphoma or cancer generally, and to maximise the things that are known to increase well-being. I've stopped eating beef and processed pork as well as increasing my fruit and veg intake. My hair is coloured with henna, but I'm gradually growing that out. I exercise everyday by cycling and/or dancing, and I make time for friends and family.

Updates

Had a chat at the clinic today and they are still concerned about my cough. I was sent for another chest X-ray to see if there had been any improvement, which there had. Discussion about whether or not to continue with the Rituximab - this will be treatment 10/12. Decided to go ahead this time and review for next time.

Respiratory clinic

A new day and  a new clinic. I had some lung tests that involved blowing into a tube for as long and as hard as possible - you have to do it three times to make sure they are accurate readings. I kept stopping to cough. The respiratory specialist was very nice and we discussed my lungs in detail - I even got to look at the pictures from the scans and X-rays. Interesting, but a bit spooky to actually see the shady parts on my lungs where there ought not to be. He sent me for another X-ray, and also did a test with Ventalin to see if that helped, but it didn't. He came to the conclusion that there was no signs of anything more serious on my lungs, but that there was a low level pneumonia that would probably gradually clear up. He did suggest trying a steroid inhaler as well to see if that helped with the symptoms.

Coughs and colds

Everyone around me seems to be suffering with coughs and colds, but I seem to have avoided all of them! I have suggested that others try the Rituximab, but no-one has taken me up on the offer yet...

However, over the last couple of months I've had a cough and at the beginning of March had a bit of excitement. I woke up in the middle of the night with a very strong pain in the middle of my chest. It didn't go away, and eventually Keith called 999 he was so worried. After a few minutes of questions, they sent an ambulance with a very helpful paramedic. He checked me over and said that the pain was not my heart, but probably I had pulled a muscle in my chest from coughing. Painkillers soon sorted it out and in a day or so I felt much better - if I didn't laugh, cough or sneeze!

The cough didn't completely go, and at the end of March got much worse so that I was taking cough mixture several times at night and getting tired and breathless, so went to the GP. He gave me antibiotics and sent me for an xray, so I went to the walk-in clinic in Cobridge. They called me back the same afternoon to tell me they wanted a CT scan as well, so another appointment early the next week. The CT scan showed 'changes' in an area of my lung (they have so many scans they can compare!) so an appointment with the respiritory consultant in a couple of weeks to see what they think. Last weekend lost my voice too which I think maybe connected, but will be able to find out more soon.

Half way house

Treatment today will be halfway through the Rituximab. All going well, and gut now settling down with new regime of laxatives

Piriton

As part of each Rituximab maintenance therapy they give me a steroid and an antihistamine. The Rituximab and the steroid are fine, but the antihistamine makes me very drowsy. I drowsed all afternoon during the treatment, too sleepy to read my book, and it was too noisy to actually sleep. It's nearly bedtime now, and I'm just about starting to feel more awake!

This treatment will be the half-way point of the maintenance therapy. It's a little scary to think about when it finishes and I will have to stay in remission on my own. I know I managed for 25 years before, but not sure how long it will be this time!

My hair, as predicted, has grown back curly! I've had it cut short and layered and am experimenting with it, but seem to be good at getting it looking frizzy, not so good at the loose curls I was hoping for!