Plan C

Keith came with me to see the consultant today. I'd managed, through persistent phoning, to get an earlier appointment and was expecting to have to wait to the end of the clinic, but we were seen first. We updated Mr Hussain on the (lack!) of progress so far - he was also very disappointed that the steroids didn't work.

His Plan C was to prescribe a low-dose antibiotic that is taken every other day for 3 months. At this dose, it works as an anti-inflammatory and will, hopefully, help to heal the inflammation in my lung.

He tried to explain, again, what is happening in my lungs by showing me the x-rays and CT scan images. For fun, I've found some on the internet that look similar, first an x-ray:

This x-ray is from a person with pneumonia and the white cloudy areas are similar to mine (marked as 'bad' on the photo!) I've had several x-rays and the white patches have moved round, suggesting that some infection has cleared up and some is new infection. 

I've also had several CT scans that take 'slices' of x-rays horizontally through the body. In this image, the person is lying down (the spine is marked) and the view is as though you were looking inside the body from the head down towards the feet.The black areas are the lungs. I have a lung 'cavity' that is a hole in the spongy stuff that the lungs are made of. This can be caused by an infection, or probably in my case, from the Rituximab. The cavity fills up with gunk and this causes the cough. The lungs are normally sterile, and the cavity breaches this making the lungs prone to infection. The cavity is surrounded by inflammation and it's this that the new drugs are trying to heal.

The new drugs should have an effect within 6-8 weeks, and I'm taking bets on my first cough-free day. If you'd like to bet on a date, just email me - there may be prizes!

Irony

We were really hoping the steroid tablets would work and at every cough over the last few days I wondered if it was the last....

But the cough didn't clear up and I felt the same at the end of the course. Worse than that was to follow because 2 days after the course had finished I started to feel poorly again, very feverish and tired. Turns out I was having withdrawal side effects.

Back to the GP, but unfortunately there is nothing more they can do, so hopefully they can arrange  an earlier appointment at the consultant to try a different course of treatment.

All the time I've been ill I've tried to carry on with my life as much as possible, and I'd planned a lovely birthday weekend. Fortunately, I was able to enjoy the Emma Bridgewater pottery on Saturday, but I've had to postpone the trip to Ironbridge with Sarah and the family to next week. I'm very grateful to all my family and friends who support me even when I'm pretty miserable and fed up with being ill.

An old friend...

My cough has got much worse and so I went to the GP today. She prescribed an old friend for me - Prednisolone steroid tablets! According to the research I've been doing, this will cure the cough and I'm very much looking forwards to that! I have a short course of 6 tablets for 5 days and I'm counting down the days....

Tests...

I had a whole range of different lung tests today at the hospital. I had to sit in a box (a bit like a shower!) with a contraption to breath in and out of. The tests were mostly OK, but they wanted to be sure that the results were accurate, so each one could be repeated up to 8 times until they had 3 readings the same! Some felt like I was being tested for the Olympic synchronized swimming team because I had a rather flattering blue nose clip and had to take very deep breaths and hold them! I'm not sure if I passed :)

I had hoped that the inhaler would have really cleared up my cough by now, but whilst it did get a lot better, it's now getting worse again.

More new drugs

I had another CT scan yesterday and met with the respiratory specialist today. The inflammation on my lungs has got better in some places, but worse in others and I'm still coughing and have a sore throat. I've been prescribed a course of antibiotics and a new inhaler that includes a steroid to heal the inflammation, as well as a drug to open up the bronchials. I'm really hopeful that this will work!

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

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!

More results

I met with the gastroenterologist on Monday and the tests have all come back clear. He thinks I have a 'sluggish' gut and that is causing the constipation and then the diarrhea. He had prescribed a selection of laxatives last time, but they didn't seem to make much difference. He has prescribed a slightly different selection for me to try, assuring me that they are safe to take in large quantities (not sure I like the sound of that!)

I've been researching this a little myself and am going to include a probiotic (Yakult) in my diet to see if that helps. In addition, I'm going to try a home-made mixture of prunes/figs/dates/currants as well!

Hopefully, with my normal healthy diet and exercise, my gut will start to settle down and get back to normal.

Review

Review at the hospital today and I was able to talk about the problems with my gut. They assured me that the endoscopy was to rule out anything serious, but they are sure there's nothing serious. My blood counts are improving - white blood count nearly normal!

Prep Day

To prepare for the colon procedure I had to follow a very strict regimen. I had to eat a limited 'low residue' diet and take some strong laxatives. The diet sheet included several things I don't normally eat, so had to go shopping specially for cornflakes and white bread. The laxative is taken twice, once in the morning and once mid afternoon, after which you don't eat until the morning of the procedure. By the end of the day it was apparent that I am resistant to laxatives! Not really good news. The procedure was fairly painless, but my colon wasn't clear enough for a full test. Saw some fascinating pictures of the inside of my colon! Results in a few weeks.

A surprise!

I had my appointment with the gastroenterologist this week and I was rather surprised by his possible diagnosis. I've been having bouts of diarrhea that left me feeling very weak and poorly, sometimes for several days. The consultant said that he thinks I am chronically constipated, probably brought on by the treatment - not what I associated with diarrhea! A very good diagnosis, though, as easily treatable! I have to go for an endoscopy at the end of August to check the bowel and I'm not really looking forwards to that!

The cancer talk at the university earlier this year reminded me to consider the environmental causes of cancer, so I've taken the decision to go vegetarian (kind of - I still eat fish and occasionally chicken) because red meat and processed meats are known to be associated with cancers. There has also been some research on the use of hair dyes and NHL that suggested there might be a connection, so after a bit of research, have used Henna to colour my hair back to dark brown. It's quite a change after all these years of being blond!