Finally...

The last treatment was last week and the effects are just about worn off now. I was actually looking forwards to the last treatment and really looking forwards to it all being over. I had hoped that the after effects of this last round of treatment would be less severe than the others, but wishful thinking I guess! I've had similar aches and pains and my hair has had one last go at falling out, but finally feeling better this evening and preparing for work tomorrow.

Now that the chemotherapy treatment is over, I get 2 years of maintenance therapy. This is Rituximab injections every 2 (or 3) months which will keep the lymphoma in a dormant state. The Rituximab is the slowest to be injected, but has very few side effects so I should feel well. After the 2 years, I'm on my own! Hopefully the lymphoma will remain in remission for another 25 years... Even if it does return, they will only treat it if the swollen lymph are causing problems.

It's been a tough few months whilst having this treatment, but there are a few things that have been positive and I don't want to forget. The support from my friends and family has been really important to me and I really appreciate it. I'm lucky to have so many lovely people around me!

It's also much quicker to do my hair now and it's saved me a fortune in hairdressers!

Nearly there...

My review today confirmed that I will only be having 6 cycles of treatment, a big relief! However, my blood hasn't recovered sufficiently, so the final cycle of treatment is delayed until next week.

Getting better...

The reduced dose of vincristine definitely made a difference! I was unwell on Tuesday, but a lot better on Wednesday, I was almost thinking I'd be back at work on Thursday! However, started to get pain again in my stomach Wednesday evening and felt pretty rough on Thursday.  Part of it is my feeling mad that I'm not better! Back to work on Friday though and out to see James Bond film too. Even if the number of cycles stays at 8, I think it will be a lot easier to handle. But if the next one really is the last that will be great!

Good news!

I had an MRI scan last Saturday afternoon (the appointment nearly ruined my shopping day with Sarah) and the results were ready today for my review at the hospital. To my relief, the scan showed that all my lymph nodes are back to normal, suggesting that the treatment really is working! After talking to the doctor about how the treatment has been affecting me he said that they would reduce the vincristine dose to half. This means I shouldn't be so ill afterwards. In addition, he said that they may reduce the total number of treatments from 8 to 6, meaning just 1 more after tomorrow. Then i will just have the Rituximab every 8 weeks for 2 years, but i don't think there are many side effects from that.

My hair will probably last if there are just 2 treatments left!

Blue

It's been another long week. I felt poorly again from Tues-Friday, but not as bad as cycle 3. Mum came over to keep me company on Tuesday and Wednesday and we sat in the sunny bay window with our laptops on our knees! I'd hoped to be better by Friday, but my stomach was still sore, and not much better today. Feeling blue, despite the sunny day and Jan's birthday party to look forwards to. I'm fed up of being ill now and ready for it all to be over! However, I have now made it  through the 4th cycle. Four more to go...

One of the strange things about being ill is the lost time. I've now spent days sitting in the bay window, resting, reading, playing solitaire! It's a kind of listless limbo while I wait to get back to normal. Some days I've done bits of work on the laptop for Keith, searching for teaching resources, and typing up handouts and cover-sheets. Other days I've hardly even read a few pages.

I was inspired a few months ago by watching Jane McGonigal on TED talk about how she used a game to help her get better from an illness. She has then gone on to set up an online 'game' to enable everyone to try it out too! Basically, you get 'points' for doing things that help make you better - ie contacting friends and family, exercising etc even when you don't feel like it. I've signed up and it seems good (also a gentle distraction when I'm not feeling great!) I don't have many points yet, so if anyone wants to join in and help me get points you can be one of my allies - go to www.superbetter.com  and  take a look at the videos. Email me if you want to be an ally!

My next treatment date is 17 Oct and I'm likely to be poorly the week after so if anyone wants to phone, email, send chocolates (!) that would be a good week to do it!

Treatment 4/8

Half way there! The treatment went well today, except that i lost one of the steroids under the fridge! Managed to get another at the hospital though. I wasn't really looking forwards to today after the rough time I'd had last time, but it could get better as i get used to the drugs. They have given me some strong painkillers just in case i need them, and mum has offered to come over and keep me company again! I have extra anti sickness drugs in case, like last Saturday, it starts up again. The feeling sick didn't manage to spoil the lovely day at the birthday party though. Sometimes i just have to do things and be ill, can't just stop and wait till it's all over.

I've had lots of really good support from family and friends, cards and emails etc, and it really makes a difference, so thanks to everyone :-)

Solitaire

This week hasn't been too good. I had a good rest on Monday and was expecting to be fine and back at work on Tuesday, but started to feel ill Monday night. I didn't sleep and by Tuesday morning felt worse. Mum had agreed to come over and look after me, so I phoned and she came Tuesday afternoon. I didn't feel like doing anything at all, so we sat on the sofa, in the sun, and played solitaire on the Asus! I was a little better on Wednesday morning, so mum went home after lunch and I had a nap. Thursday I was able to move around a bit more, and started to feel more alert so planned to go back to work on Friday. However, Friday morning shower and hair wash was too much for me and I stayed at home to rest again.

The treatment seems to be affecting all of my body, and it's not like an illness where you are in pain in one part of the body and it then goes away. The various pains and feelings change and there is no regular pattern. Here is the (full!) list of what I have experienced this week:

Swollen and painful glands in my neck, head, chest, underarms and groin. Normal painkillers didn't work, nor did stronger co-codomol.
Aching lymph (I'm assuming the pain was coming from the lymph 'veins') in my upper arms and thighs
Painful joints in my shoulders, left wrist and right hip
Pain and bloating in my stomach and abdomen
Constipation and then the opposite! (And, for those interested, the darkest, strongest smelling urine!)
General feeling of weakness and tiredness
Not being able to sleep - feeling wide awake and feeling too uncomfortable to rest at night
Tingling and numbness in my tongue, fingers and toes
High pulse rate - I could feel my heart racing even when resting
Light-headed and dizzy after standing for a few minutes
Feeling sick and no appetite
Sudden stabbing pains in the middle of my back

Some of these effects of the treatment are what I expected but every person reacts to the treatment differently. Ian says that I am very sensitive to the treatment - I hope this means that it is working exceptionally well too!

Planning

I keep hoping that a pattern will emerge and I will know when I will be ill, but no! After the last treatment, one of the few side effects that hadn't yet got me finally caught up with me. Thursday I was very tired and dozed and slept most of the day, fortunately started to feel better in the evening and so back at work on Friday. I had planned a busy weekend with 2 BBQs and a trip to an arts festival and managed to do all I wanted, but I was very tired on Sunday but couldn't sleep! So had a day to rest at home today. In the past, the few days after the treatment have been the best and where I have felt most energetic.

Fortunately, most of the other side effects seem to be less severe, so my mouth is not too bad, and my digestive system seems to be coping! My hair loss seemed to have slowed down, but then another lot started to fall over the weekend. People keep reminding me that I have a lot of hair, so it might just last!  

Treatment 3/8

I met Ian at the clinic yesterday to review my blood test results and all seemed fine. They check to see how my white blood cells are doing. The chemotherapy attacks them but if they get too low I will be at risk of infection. Mine were low, but not too low to go ahead with the next round of treatment. It's a tricky balance to get right!

Had the third treatment session today and went well! The drugs all went in fine and fairly quickly, not much waiting at the clinic for the rest of my drugs to bring home. A lovely sunny day so I walked home from the hospital in time for lunch! Sarah and the children came over and we all went to the park - a marvelous afternoon!

I have extra and different drugs for the various side effects, and hopefully, they will work and I won't be as ill this time round. I have already planned a busy weekend ahead so I'd better be OK!

Next session in 3 weeks and I will be half way there!

Hair today....

I was told that I wouldn't lose my hair with this form of chemotherapy, but that it might thin. However, my hair started to fall out rather dramatically on Monday - not very nice especially when I wasn't expecting to lose it! I've had my hair cut shorter and hope it will stop soon.

I had arranged to babysit for Penny and Lucas on Sunday and Monday but my mouth has been sore so I came home early on Monday. I phoned Ian for advice - I think it's a reaction to the Vinchristine and he suggested some paracetamol, antihistamine and a mouthwash. He even dropped the prescription off for me on his way home from work! How about that for a supportive caring NHS! My mouth is feeling a bit better, but still sore when I eat.

Treatment 2/8

Is it just me, or does 1/4 of the way there sound better than 25%? I had hoped the second round of treatment would be quicker and with fewer reactions, and I was lucky! We were out by 2.30 and soon home. I took some pictures of  my 20 steroids I take with breakfast, the very nice new cancer centre and the comfy chairs!

The three weeks since the first treatment seemed to have gone very quickly. The last week at work felt like normal life again - I've been eating, sleeping well and just  a little tired. It almost felt like there was nothing the matter! I hope this round of treatment has fewer side effects and normal life continues!

Back to work

Fortunately, the antihistamine and paracetamol worked and by Tuesday evening the allergy had almost gone and I was feeling back to normal!

I cycled to work on Wednesday morning, thinking that it was all downhill, but it wore me out! I looked like I'd run a marathon when I got to work and I needed a hour to recover! Keith came to pick me up at lunchtime and I came home for a rest. I rested on Thursday, gradually realizing that even when I don't feel very ill, I am actually still fighting a battle internally.

Work on Friday was much better (no cycling - Keith gave me a lift in) and a chance to catch up on emails, meetings and get things organised. I'm still determined to carry on working throughout the treatment, and I had a chance to chat to Sue about possible ways to minimize disruption if I need to take time off. They are all very supportive at work, I'm very lucky to work in this kind of environment.

I had a very good weekend, lots of visitors bringing food and flowers, and a lovely walk in the woods on Sunday. I think my plan to enjoy the days when I am well is going to be a good one!

Even more good news is that my swollen glands in my groin have all gone which means I can walk and sit comfortably and I've lost a few pounds of the weight I put on in Barcelona!

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/

Surgery

I was first on the list and didn't have to wait long. All was efficient and well organised and when I woke up I felt fine, just a sore throat. The wound wasn't painful at all and I was slightly surprised to find that I was OK to get up, dress, and be out by late afternoon.

New hospital

Found our way to the outpatients at the new hospital and checked in via the computer screen. They have nearly as many staff there to help people use the computer as computers. Waited in a waiting room and then called to a sub waiting room with a very loud clock. The surgeon took a look and explained the procedure, also suggesting that many lymph are 'reactive' ie infected and not necessarily cancerous.

Keith and I went into Hanley shopping afterwards

25 years in remission

I went to the GP today knowing what she would say, but not really believing it. I had noticed a swollen gland in my groin a few months ago and thought it might go away, but it hasn't. After she had taken a look she told me I would need blood tests and a biopsy to see if it was the lymphoma back after all this time. Sitting in the surgery again, I felt like the last 25 years hadn't happened.