Category Archives: CT scan

This is the end…

No, not that end, but the end of this blog.

And that’s because there is nothing left for me to say on it. After 10 years, it’s job is done.

I am well.

I have actually been well since the end of my chemotherapy in 2010, but it’s only after several years than one can be sure. As time, and research moves on, it is becoming clearer that, for the lucky ones like me, there may be a “cure” for B-Cell Follicular Non-Hodgkin Lymphoma after all. Cure may be too strong a word, but “remission long enough to get you to the end of your life anyway” is how I am looking at it.

Basically, there is a proportion of the population with this who respond extremely well to the chemo and fantastic treatments currently available. Some 80% of patients survive 24 months without relapsing and needing further treatment, or unfortunately, dying. If you can get beyond that 24 month period, then it seems that you are more likely to never relapse. I will be 10 years from the start of my treatment in February and am confident that I am through this now.

Rituximab, as I have said before, has been a game-changer and the newer versions are even better. Great news is that Rituximab is now off-patent and available at a much more reasonable cost, so hopefully more people around the world can benefit. But, thanks to the people at Roche who needed the high price to bring it to market in the first place. Let’s hope that the research ongoing today brings forward better and better treatments.

I will still see my consultant going forwards, but only once per year instead of every six months, but can foresee a time when I will stop that too.

I wouldn’t wish this on anyone, but I am thankful for all the people who treated me and supported me when I was ill. And I hope that someone with NHL reading this has got something out of it – that was one of the reasons for starting it in the first place.

Now, it’s time to look forward to a great holiday in the US in the Autumn celebrating Ann’s birthday, our first ever Christmas away from home and a couple of trips booked for next year too.

But most importantly, our daughter’s wedding in a couple of month’s time. It’s going to be a great day.

I will leave this blog with a couple of photos taken a fortnight ago near the Severn Valley Railway, near Kidderminster. What a beautiful spot this is.

Severn-Valley-Railway

Poppies

Thank you.

 

 

PS – Since Flickr now have a policy of restricting the number of photographs on their site and Apple have stopped iWeb, I might set up a photography page on here. I will add a link if I do.

I’m still here…

Obviously, the periods between my posting on the blog have been getting longer and longer, but I have never gone nearly 4 months before. So maybe it’s time to pick this up again.

I have been prompted by two things really. Firstly, the retirement of a colleague recently who chastised me for not posting an update for a long time. He has a family member who has a similar condition to this and we have chatted about similar experiences. I hope he drops by and see this and is enjoying his life outside the office.

Secondly, through my contacts on the NCRI, I was approached this week by a big pharmaceutical company who were looking for some insight into drug and immuno therapy from a patient’s point of view. I pointed them to this blog and shared my experiences in a phone interview last Friday. The contact there is presenting to the great and the good of his organisation next week and I was happy to help him get a message across. They may have some exciting news to share with the world later, which will obviously be good!

I had my 6 month check-up with my consultant in June and I am pleased to say that things are still looking good from a health point of view. Next one will be in December and once again, there is no need for a CT scan this year. I’m now into my 8th year with this, 5 years post-maintenance.

Another birthday has also been and gone and I’m looking forward to a session with a local blacksmith next weekend. Ann bought me a Saturday morning’s experience there – I will be making a poker for the fire, apparently. Watch this space…

We have spent an excellent week on Islay with some good friends and it was a really good experience showing them around a place we know and love well. They hadn’t been out to a Scottish island before, and I suspect that they will be back soon. What’s not to like? We were very fortunate with the weather and the lack of midgies – if the former is bad and the later are out, it can be a bit miserable out there.

Here are a few photos from the week

Port-Charlotte-Rainbow

Sunset-over-Lochindaal

Lagavulin

Portnahaven

The new car is going extremely well and is a delight to drive and I am pleased to say that the satnav works perfectly. Which makes a nice change. I must go out and wash it shortly…

My task now is to find a suitable venue for everyone to meet for the Leica Forum Challenge in Rome in October. I have dinner for 40 sorted, but finding a suitable cafe in the centre of the city to meet at lunchtime is proving to be a challenge in itself.

Answers on a postcard please.

And, I promise that the next update will be before Christmas…

 

 

It’s been a long time

Well. It must be about 7 weeks since I last posted an update here. That hasn’t happened in the last 7 years, so I must be getting into a much more relaxed frame of mind about things.

The Orkney holiday is a dim and distant memory now, but there is a large canvas on the wall in the spare bedroom of the Ring of Brodgar as a reminder of a very good holiday. It is a long way there, though, but we made it back in one piece in two days, so that’s not too bad. Now, in August, everyone in the world seems to be on their holidays and those of us who are able to take one outside of the school holidays feel a bit left out. So, a couple of nights away in a country house hotel in south west Wales have been booked, so that’s something to look forward to. Will try to get to Tenby for the first time ever – it looks really nice – provided we can avoid the crowds.

A birthday has come and gone since my last update too. It’s a bit upsetting when you have received a letter from a pension company saying that you have to decide what to do with your pension fund at your birthday. Nothing makes you feel quite as old as when you have to deal with a pension. Still, it wasn’t a very large pot, so I took the tax free lump sum of 25% and we will have the bathroom refurbished with that money (if we can ever find someone to do the work for us…). It’s also been my Dad’s 80’th birthday this month, so I went to visit him and my Mum and take them for lunch a couple of Sundays ago, which was nice.

Health-wise, things are fine. I am pleased that I decided not to have the CT scan this Christmas coming. It’s one less stress-inducing event that I can probably do without. I attended a meeting of the National Cancer Research Institute consumer forum last month and it will be good to get into that more deeply as the autumn comes along. I have a two-day training session to look forward to in September, which will help a great deal. Unfortunately, I found that the other lymphoma consumer on the panel, a man with whom I have exchanged a couple of emails and met for the first time at that recent meeting, died unexpectedly this week. That’s a bit of a shock as he seemed perfectly well when I met him and he was good company in the workshop sessions. I know that he will be missed by the NCRI. Let’s hope that I can take up the baton he has left behind.

I have also attended two fundraising events on behalf of Bloodwise. Firstly I shook a bucket (without shaking it) at Aldi in Neston and raised £35 in two hours. Takings are down over the year without a doubt. Last weekend I helped out at the Strawberry Tea, organised in a house and garden also on the Wirral. Again, takings on a like for like basis were down again here too. All a bit disappointing, but it was a good afternoon and lots of people enjoyed their scones and strawberries. And lots of tea.

This weekend coming will mark the first anniversary of us moving to this bungalow. Blog posts previously have charted our progress in doing the place up and we are definitely coming to the end of the interior now. I mentioned a while back that we had ordered a new front door. This was delivered and installed a few days before we went to Orkney and has made a huge difference to the look of the bungie from outside and brought loads more light inside.

Once the bathroom is done, I think I will gather a collection of before and after photographs into an album, to remind us of the hard work and time that has been put into transforming that old lady’s bungalow into our home.

So, as the summer, which really only lasted two days in July this year starts to turn to autumn (14C on the way home this afternoon), thoughts turn to Goodwood Revival in September and the Leica One Challenge in Lisbon in October. These things come around so quickly…

 

 

 

Some good news today

I saw my consultant this morning for my six monthly check-up. When I say “check-up”, I really mean 10 minute chat followed by him giving my nodes a grope and sending me on my way via the phlebotomist, who now recognises me and knows me by name without checking my notes.

Being recognised, while good, isn’t the good news.

The good news is that he gave me the choice of having or not having a CT scan at Christmas, as opposed to just telling me that’s what we would be doing on previous occasions. I chose not to, and he said that was a wise choice. In the US, I would be given a CT scan every visit, but that’s just so that they can spend the insurance money. Over here, even when it is done privately, consultants are a little more patient-centric rather than bank-balance focused. 2016 is therefore a significant year in my post-diagnosis world.

For the first time in eight years, I will not be having a CT scan this year.

The last year that I didn’t have one was 2008, which feels like a lifetime away. So much has happened (as evidenced by this blog…), but so much that is positive has come out of this whole experience. I explained to him that while I would never have chosen this to have happen, obviously, I am glad that it has. I have done things I wouldn’t have done, met people I wouldn’t have met and become a better person that I might have been had it just been a hernia all those years ago.

Here’s to this being the first of many years of not having to have CT scans. I give it two or three. (There’s me, not being able to quite take the good news at face value…)

Oh, and on other matters, I have decided to spend the “reward” funds for being with my company for 10 years on a dry stone walling course. If I can only get the blasted website there to work…

Sunshine (?), snow and a scan

Having now shared the location of next year’s One Challenge with the Leica Forum, I will also share it here. The group decided, after dinner in Vienna, that next year we should all assemble in Lisbon. There was some discussion regarding how to vote for the venue for next year and we did change things slightly this time round. It’s still not perfect though, and I want to make sure that everyone who votes has an equal vote – at present those who tick against the list last are often presented with a fait accompli. Will try to work out an even better way for next time.

I have been to Lisbon before, on a school cruise in an old troop-ship called the SS Nevassa. This would have been in 1972, when I was not yet 11 and I am looking forward to it. It will be nice to get some sunshine, with a bit of luck, and we could even extend the stay to drive up the Atlantic coast and compare with California last spring. We will see. Maybe I could take my diary that I wrote as part of the school trip as a guide. “First we did this and then we did that” – bound to be useful.

Next up, however, is the trip to see my Great Grandfather William, buried on the Somme. He was mortally wounded in the field and died on 26th November 1915. We have arranged a personal battlefield tour from an English chap who, with his wife, runs a B&B on the front line, not far from where William is buried. I am sure it will be an emotional day. We were there 10 years ago and it was freezing cold and snowing, which helped to bring home what men had to put up with out there. We have often visited during the summer on the way to or from a holiday in France, but never at the beginning of winter before. This guide has an incredible library of information in his house and while we were there last time, told me lots about what William was up to out there that I didn’t know before. I need to make sure I write it all down, so that I can pass it on to my Dad.

In March, the plan is to head north and to Norway to see, with a bit of luck, the Northern Lights. I need to get that sorted soon, as it is becoming an increasingly popular thing to do, so hotels and the like might be difficult. I will try to sort that all out this week, but it’s going to take a bit of planning. I don’t think that we can afford the cruise on one of the post ships that run up and down the coast, so maybe will hire a 4×4 instead and head to the hills ourselves. Our good friends who live in Oslo have offered to put us up for the weekend we arrive, so that will be a real treat in itself.

As the weather turns distinctly autumnal, the clocks have gone back and it’s dark on the way home, it will soon be time to have my annual CT scan. I arranged this when I saw my consultant back in June and he said that he wanted me to have it at the end of November / first week in December. That’s not long now, really, not the way that diaries fill up these days. Not having heard anything from The Christie, I called them this morning. They only book CT scans 6 weeks in advance, and the book for the week beginning 30/11 will not open until later today, so they have offered to call me back.

I’m looking forward to it. When he reads the results, I am, of course, hoping that the disease is in exactly the same state as it was last Christmas but there is only one way to find out. As far as I can tell, within myself, I am pretty sure that it’s just sitting there doing nothing at present, but it will be good to know for sure.

Doesn’t seem like more than a few weeks since I was last there, but that’s another story…

[And this is the 300th post on this blog – thanks to those of you who have been with me through thick and thin and to everyone else who reads it. Your support is absolutely invaluable and much appreciated]