Christmas Cheer!

My clinic appointment today was very thorough! I mentioned that I still had the cough :( and a sore throat and still wasn't up to my normal fitness. The consultant used his iPhone light to look at my throat, checked the date for my next chest scan and sent off for blood tests to see if I have any vitamin deficiencies. All my bloods are normal, except that my lymphocytes are low at the moment. He says that it can take 6 months for the Rituximab to completely clear out of my system, and this (or the lymphoma) can cause my lowered lymphocytes and lowered immune system. He mentioned that you can have 'transplanted' anti-bodies as an injection that will help my system while it recovers. I'm looking forwards to a merry Christmas and a new year where I gradually get better and better!

Back to work

The antibiotics worked after a few days and I was back at work in a week! Not at my full strength, it will be a while before I'm cycling to work or Morris dancing! I still have the cough, though, and the consultant today said that they hope that now I'm off the Rituximab my immune system will start to recover and the lungs will heal. I have an appointment for a scan and check up in early Jan.

Respiratory good news

I met with Mr Hussain at the hospital today and the results from the bronchoscopy showed that I have an infection causing the pneumonia. This is good news because I have now been given the specific antibiotic that will clear it up! He thinks that they will work in 2-3 days, but it's possible that the cough won't disappear completely as my lungs are so inflamed from the infection. I may need some steroid treatment in a few weeks time. In the meantime, I'm looking forwards to a quiet house with no coughing, sleeping all night, eating, getting some energy back and being pain free!  

Lumpy

I was booked in for a general anaesthetic to remove the lump on my back today, but after discussing my pneumonia, it was decided to do the procedure by local. Not for the faint-hearted!  I did get to see the inside of the operating theatre, all the many staff and scary looking machines. I could also hear the surgeon talking through the procedure with the students. That's when I heard him confirm that the lump was in fact, just a fatty lump and not a swollen lymph. It will still be sent to the lab for analysis, but good news all round, and the wound is not too sore at the moment either!

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