Strawberry?

Well, last night's reaction to the strawberry or one of the dozen or so drugs didn't wear off overnight. My throat, mouth and jaw were still really sore and I felt like I had been eating nettles! As well as all that a strange rash started on one of my legs. After calling the hospital and speaking to the doctor they suggested I go down for an assessment. They sent me for a neck x-ray as there is some swelling in my neck and took blood tests. They have swapped the antibiotic I was taking for another one and gave me some anti-histamine for the reaction - hopefully this will soon start to make my mouth feel like normal again.

I have to go back tomorrow to check my neck and I won't be eating strawberries for a while either! 

Effects and effects

Since the first round of treatment, there have been many effects and side effects. So many that I think my body may be working its way down a very long list!
The first effect was a good one. The lumps on my leg went down so that I could sit and walk comfortably and I felt full of energy. Thursday felt great and we had a lovely afternoon out with Sarah and the children at Amerton Farm in the sunshine.

However, on Friday I had nausea and indigestion. I called the hospital for advice and Ian (my key specialist nurse) suggested an additional drug (!) to take and also gave me a script for another in case that didn't work. Friday evening I felt much better and got dressed up to go out to Tracy's birthday meal. It was really good to get together with everyone and I just ate a little but mostly relished the company!

Saturday the indigestion woke me early. I took the new drug, but had pain all day, somewhat helped by Paracetamol. By Sunday though the indigestion had nearly gone and we went out for a lovely walk in Biddulph woods, no mushrooms, but lots of sun, green trees and amazing smells!

Sunday evening was looking good - there was just one tablet to take on the chart and I even felt like a glass of wine. However, just after taking the tablet I ate a strawberry and instantly felt that something was wrong. My jaw felt as though all the nerves were jangling, my throat was sore and felt like it was swelling. We looked at the leaflet in the box, and yes, a side effect was allergic reaction at any time (I had already taken 5 of these tablets). Strange how the strawberry set it off - Keith had to eat them and declared they were delicious! A few hours later my throat is still sore, but it's feeling better. Do I have to have ALL the side effects?

Treatment 1/8

The cocktail of drugs was started at 9.30 and finally finished at 4pm today. There were 3 different drugs given in a drip while I sat in a comfy chair! They do the first session slowly in case of any reactions and sure enough my throat started to get sore and swell up so they gave me additional drugs and slowed the rate. Hopefully, next time it won't take as long. There are now just tablets to take before going back in 3 weeks.

Other than that, all went well and now back home looking forwards to leftovers from yesterday's bbq! 

The plan

We went to the hospital today to get the test results and to see what the plan is. We even had bets - Keith went for 'watch and wait' (they start treatment when the symptoms start to be a problem), whereas I had gone for radiotherapy (local treatment on the specific lymph node). In the end we both lost :(

The blood tests were all normal. However, the bone marrow test showed that the bone marrow was working well but  there was some evidence of the lymphoma there and the CT scan showed several enlarged lymph nodes in my abdomen. The consultant displayed the images from the CT scan on the screen - fascinating! One of the nodes was quite large - about 5x2 cm and is probably the one that is making my leg uncomfortable.

The consultant recommended that chemotherapy treatment is started straight away - tomorrow! This consists of anti-cancer drugs (some tablets and some given via a drip in hospital) and drugs to counteract the side-effects of the treatment.

For those interested, here are all the drugs:
The treatment for the lymphoma is called  R-CVP and is given as a single course every 3 weeks for about 6 months :
Monoclonal antibody - Rituximab - is given by a drip
Cyclophosphamide given by a drip
Vincristine given by a drip
Prednisilone (steroids) tablets taken every day for 5 days each course

There are possible side effects and these are reduced by taking the following:
Allopurinol to prevent gout
Ranitidine (Zantak) to reduce acid in the stomach
Domperidone - anti-sickness
Cotrimoxazole - antibiotic to protect from a specific chest infection

They don't mention any explicit chocolate treatment, but I'm sure they have it sorted!

Went to Trentham Gardens for a Pieminister Pie in the sunshine for lunch. Had a lovely bbq this evening and a surprise visit from Sarah - a lovely way to spend the evening!

Testing... Testing...

Two tests done today at the hospital. The first at 9.15 in the Xray department  was the CT scan (computerised tomography). This was like being passed through a large polo-shaped machine and I felt like I would pass out into another time or universe! This test will tell us if there are any other enlarged lymph nodes.

The second at 12 was a bone marrow test. This was done in the Cancer centre and we saw lots of other patients sitting round with drips - presumably having chemotherapy. A lovely new centre with lots of artworks and comfortable seats etc though. The bone marrow test is to see if the lymphoma has spread to the bone marrow.

Came home for an afternoon nap and Keith woke me at 4 with tea and a cookie!

Graduation

Walked up to the pharmasist for the prescripton sedative - felt a bit like a drug dealer after Keith told me they are a controlled substance! Since 2009 prescriptions for cancer drugs are free.

Keith's graduation today at Keele in the sunshine! Wore my blue summer dress and felt all dressed up! Keith wore his linen suit and then we were wearing the same outfits that we wore for the wedding last summer. Keith went to sit in the graduates area of the chapel and I was up in the balcony where I coudn't really see, other than via the screened images. Saw then that I had a text from Sue at work saying that the hospital had been trying to get hold of me.

After the ceremony, I came home to find a message from Ian saying that the CAT scan has been arranged for Thursday 9.15. It's good to have both done before we go away so that a treatment plan can be finalised on the 24th July when we get back from Barcelona.

Cure?

I met the consultant and specialist nurse today to talk over the diagnosis and what further tests need to be done for 'staging'. The nurse was taking notes throughout and I only realised at the end that the notes were for me. Even though I've been reading and finding out about NHL it was good to have the basic information repeated for me. They saw that I was anxious about having the  bone marrow test done and brought it forwards to tomorrow as well as offering a sedative to help me get through it.

I have assumed all these years that I had been 'cured' of lymphoma all those years ago, but it appears that it can't be cured: it can stay in remission a long time, and it can be around for a long time without doing much harm, but it doesn't go away. Now I see why Christie's were not keen to stop seeing me even after 11 years of no symptoms. They knew it would be back! 

I'm glad I've lived those 25 years without thinking it would come back. I always knew I would have a slightly higher chance of getting another cancer, but still lived like I was cured of the NHL.

Afterwards, Keith and I went to Festival Park for some retail therapy and i bought a dress for my holidays!

Waiting

The three weeks before going to get the results seemed a very long time. I was still hoping that everything was OK, but not really thinking it would be. Sure enough, the surgeon said I had 'done it again' and had a NHL. He said I would be referred to the Lymphoma team.

Keith and I went to Trentham Gardens for a coffee and to find a quiet place to phone everyone.

Started doing some reading (there wasn't much patient information last time) and found this site (also recommended by the consultant) http://www.lymphomas.org.uk/