How it started

I first noticed that I had a problem at Easter 2016. 

I was given a Lindt chocolate ball and found that even though it was melted, I couldn't swallow it. It wouldn't go further than the back of my throat. I thought it was strange, but I thought it would pass over time. 

Then my life became very stressful due our family business moving factory premises. I had a lot of work to do before it could be handed back to the landlord, so I decided it was a perfect time to make a concerted effort to lose weight. I weighed myself on the industrial scales and then set to work. 

Over the following months I worked hard, too hard,  and I felt I had got run down. I came out in spots on my face, which took a while to heal, but then would return. 

In June, our wonderful dog unexpectedly had to be put to sleep. We were all devastated, more than I had ever been before when I had lost a dog. Then, ten days later we went on holiday to Austria, where our brand new car broke down! It was SO bad that we had to be flown home, all very stressful, and then I had to deal with the fallout from that. 

At the same time, I also had started having trouble with my sinuses and thought this might be linked to the problem I had with swallowing. I was whistling in my sleep, so I slept on the couch. I had also lost  a lot of weight, my trousers were swimming on me and I was really pleased that my plan had worked. 

The difficulty swallowing got worse so I saw my GP at the beginning of October. She decided I should have a gastroscopy first and I was lucky to get a cancellation the next day, the 6th.

It was our wedding anniversary on a Saturday at the end of the month when I got what I thought was tonsillitis. The right side of my neck swelled out and my throat was sore, but it had gone right down by the Monday. 

I didn't see the doctor for the results of the gastroscopy until Wednesday October 26th and they were fine. I still wasn't happy, as I really felt there was something wrong,  so asked her to refer me to a private ENT specialist. I decided to go to a local private hospital and see a consultant who worked at a nearby NHS hospital.

Again, was lucky and got a cancellation for the Friday, the 28th. When I arrived at the car park I had difficulty finding a space because the mobile MRI unit was there on its fortnightly visit.

The consultant was VERY  clinical, no bedside manner at all!. He took one look at my throat and told the nurse to arrange an urgent MRI. At this point I regretted moaning to myself about the scanner taking up room on the car park!
He also arranged an urgent ultrasound and needle aspiration of my right lymph gland. It was then that I realised that there was something seriously wrong in my throat.

When I returned for the results he said the biopsy was clear but that my right tonsil was over large and needed removing. He was going to transfer me over to his NHS clinic. I was really glad I was going to that hospital and NOT the one that I would have been sent to if I had be given an NHS referral!

I saw his registrar, on November 15th and he discussed the tonsillectomy and biopsy. The problem they had was that my airway was the width of a pencil, so was very restricted. I was scheduled for surgery on Monday November 21st. 

The anaesthetist was lovely, but very concerned by the narrow area for the tube and said they would have to use a child's tube. They were also concerned about the size of the tonsil and the amount of blood there could be. At a pre op appointment I found that I had lost 1.5 stones over six months. 

The operation took place,  I went on to a day ward and had my own room and facilities. The op should have been at 1.30pm but I only went down at 3pm. Everyone was lovely and the next thing I knew I was back in recovery and it was 5.30pm. It had taken far longer than expected. I had obviously caused a problem, they couldn't get all of the tonsil out and I had bled a great deal. They got enough out for me to be able to breathe normally though, so that was a relief.

I had to stay overnight at the hospital because of the complications. The next day there was a large clot on my tonsil, so I had to spend a couple of hours gargling with hydrogen peroxide and water to dissolve it. I got to my friend's house at 5pm and spent two days recovering there. 

I returned home on the 25th for my husband's 65th birthday and I had a follow up appointment in two weeks. However, on Monday 28th I got a call to go back to see the consultant the next day. I knew it could only be bad news. 

So, on Tuesday November 29th I returned to the hospital. I took my GP friend with me, picking him up from his surgery not far from the hospital. We got to see the consultant quite quickly and he broke the news. He just said that I had cancer, no sugar coating, just straight out with it! Even the nurse looked at him, shocked the way he said it.

He told me that I have a rare type of lymphoma, mantle cell. He didn't want to discuss the tonsillectomy, he just said I would now be referred over to the haematology department. And that was it. I thanked him for being right, straight from the beginning and we left. 

I really wasn't surprised by what he had told me. I think I'd known all along. Everything had slipped into place for me to get a quick diagnosis. If I'd opted for an NHS referral then I would still be waiting. At least I knew, the next thing was to find out what happens next.

I got an appointment for Friday December 2nd at the haematology unit. My female friend came with me this time. We saw a lovely man who was to become my consultant. Apparently I am quite rare! Normally it's men over 50 who get this type of cancer, not many women get it and I am 62!

He explained about the statistics and survival rates being 18months from diagnosis, but most importantly, that he hadn't lost a patient under 90 years old to this disease. He told me he was sending me for a PET/CAT scan at the local teaching hospital in the city.
This was to discover the extent of the disease. 

I left feeling a great deal better than when I went in and very glad that my friend, who is a nurse, came with me.

The scan came though and on Friday December 9th, I went to the city hospital. Again, my friend came with me. I was weighed and found I'd put on a couple of pounds, now that I'm eating better. I was then injected with radio active liquid, then scanned. The liquid came in a lead lined box, and it was a lead syringe, very James Bond!  Lying in the scanner was interesting. They had replaced some of the plain ceiling tiles with pictures of blue sky and clouds!

The following Friday, the December 16th, I returned to see my consultant with my friend. He told me the cancer was in all of the lymph glands, but that was good, as they didn't have to wait for that to happen now! It was classed as being Stage 3A - indolent, not aggressive.

The cancer was not causing me any problems and that it was nowhere else. I was put on the Watch and Wait list. 

He explained about the treatment available at the moment, which sounded awful, but hopefully by the time I need treatment there would be better drugs. Patients can go years before needing treatment and, as this cancer is so rare, there's a lot of interest and clinical 
trials taking place. 

I have to watch out for any symptoms and really look after myself now. I told him about my Egypt trip in February 2017 and he said there was no reason to cancel. The sun will do my immune system good! I've not to get over tired and have to cut back on being involved in SO many things. I need to be aware that my immune system is compromised now. . 

I have to return to see him on January 27th and I so now have my blood checked regularly for changes. He told me that I should act as normal, but slow my life down. 

BUT I'm very lucky, yes I have cancer, but not bad enough to need treatment yet. Let's hope it's a long time before I do. There is no cure at the moment and it's likely that I'll be dead in ten years, but at least I know and can plan for it. Plus, I could get knocked down by a bus tomorrow!!!!

At the moment I'm busy planning my Egypt trip and a friend's party at the end of March. I'm going to put me first for a change!