Tag Archives: lymphoma

I collected £57 for Bloodwise

I did my collection at Tesco’s largest store on the Wirral last Sunday morning. It was breezy and cool but dry and the collection location was inside the glazed, enclosed canopies that Tesco seem to like.

I have to say that when compared to my previous stint, it was not a resounding success.

Now, I was collecting on a different day, a different time of day, at a different Tesco (Bidston has a different demographic from Heswall), at a different time of the year (the end of January is always a stretched time for a lot of people), so that might have something to do with it.

I knew that collecting from 10am on a Sunday, as the store just opens was always going to be a challenge, but when I had collected precisely nothing by half ten, I was beginning to question whether it was worth the cost of my diesel to get there. I’d be better off just making a donation myself and staying at home. Things did improve over the next hour and a half, though, but I was disappointed with collecting over £100 less than I had last year at Heswall. And last year there were two of us collecting for that two hour slot, not just me on my own as I was on Sunday.

As last time, it was interesting to note who was making the donations. Once again, it was older people and those with young children. Young adults were the least generous and I did notice a lot of people seeming to deliberately use the “IN” door when leaving the store, so that they didn’t have to walk past me. Eye contact was virtually non-existent.

I also noticed that many of the people who did donate, were not at all interested in the name on the bucket. I could have been collecting for anyone, it made no difference. They just dropped a few coins in the bucket and walked off. They might have been donating to the Wirral branch of the Ku Klux Klan for all the notice they took of the banners and the bucket.

Last year, we had a lot of people stopping for a chat when they donated. “My Dad had leukaemia” or “I have lymphoma” type chats – people relating to the charity and us as collecting volunteers. This year, absolutely nothing. The name change meant nothing to the people. Only one person asked what Bloodwise meant in the whole two hours I was there. When I explained, he said “I assumed that it was about diabetes or HIV or something”.

It would be interesting and informative, I suspect, if it were possible to collect under the old name on one weekend and the new name on the following one, with the same people collecting at the same times etc. But that’s not to be.

I am grateful to the kind and generous people of Bidston who did drop a few coins in my bucket last Sunday morning and I do know that friends who collected later in the day had a bit more luck than I did. But I do have the impression that collecting money for this charity has been made a whole lot more difficult.

And, that’s a crying shame.

An evening with The Speaker

That was quite an experience, but as I had hoped, an interesting one. Tonight was the night I gave my little speech to invited guests at Westminster as part of the Lymphoma Association’s launch of a new policy/lobbying document.

They are raising awareness of the long term psychological impact of being a “survivor” in order to try to get more support for those that need it. They have used my story as part of the document and asked me to tell it tonight.

On arrival at Portcullis House, the working offices of most MPs, queuing for about 20 minutes before going through full airport security to get in, we waited in a holding area until being ushered through the tunnel to the Houses Of Parliament and into The Speaker’s quarters. This isn’t where he and his good wife live, but the public rooms below. They are, as you would expect, very grand with high ceilings and very nice wallpaper, courtesy of a previous occupant of the position. Paintings of some of the previous Speakers look down on you – literally and figuratively I suspect. It will be the wigs that do it.

The Speaker himself joined us and introduced the event, which consisted of several short speeches by the Chief Exec and other members of the charity board. And one from me.

All in all, it was a good evening and I had some very nice feedback from people in attendance. Surprisingly, I didn’t feel nervous, although friends from Manchester support group said that I looked it (!) and all in all it was an interesting thing to do. Let’s hope that those there in a position to help actually do so.

I had a glass of The Speaker’s wine and some of his sausages on sticks, so that’s all good.

Unfortunately… the train home has been delayed by half an hour due to a “medical emergency”. I’ve never seen anyone having CPR for real before, so having to swap trains is actually a minor inconvenience compared to what that lady was going through. I hope she’s OK. Will have missed the last tram back to the office now, though, so it will end up a very long day.

Now… Where’s the tea trolley?

My life is worthless (well, sort of). And the toppest Top Tip you might ever read.

That’s a bit of a dramatic (over-dramatic) headline, but, according to pretty much all the life assurance companies in the country, it may as well be true.

As part of the house move, the mortgage is going to have to increase. Consequently, I have been making enquiries about increasing life assurance. We currently have insurance to cover the mortgage we have now, but I thought I would take out a new policy to cover the new mortgage and some spare, so that in the event of the inevitable, it would be paid off and my Merry Widow could take that year-long round the world cruise…

Unfortunately, a pedalo on the lake at Hove is about as close as she will get. I am uninsurable.

With a pre-existing condition, I knew that life assurance would be a challenge, but basically the insurance companies don’t want to know. They won’t even cover me for any other cause of death, excluding the lymphoma.

The best they can do is insure me after 4 1/2 years of remission. In my case, they take that to run from the end of the maintenance, which would be at the end of 2016. So, we will revisit this at the end of next year. 

The trouble is, of course, that 4-5 years is the typical length of remission before becoming symptomatic again. With the benefit of the maintenance, that should be longer in my case, but who knows. Cleverly, the insurance companies have made the condition for getting insurance pretty nigh impossible for a lot of people. By the time they get to be in a position where they have been long enough post-treatment, they will be needing the treatment again… Clever.

I will therefore have to rely on the death-in-service benefit through my work to cover the mortgage in the event of me shuffling off. Which is OK, but that money should be used for something else. Like that cruise.

So, to the Top Tip.

Please, please, if you can afford it, buy enough life assurance AND critical illness insurance, while you are young and fit. Or even older and fit. And, if you can afford it, DO NOT STOP PAYING THE PREMIUMS. I had critical illness once but I let it drop when we moved north and were strapped for cash. If have posted before that life would be very different now if I’d still had that insurance. 

There. That’s a word from the “wise-after-the-event”. And you can have that tip for nothing. Don’t leave yourself with nothing when you need it…

Unprocessed film and news from my recent consultation

The fact that there was still an unprocessed film from my week in Cornwall at the end of June is testament to the amount of pleasure I am getting out of my photography at the moment. I am hoping that a forthcoming visit to France and Istanbul will get the creative juices flowing again.

However, given a very rainy Bank Holiday Monday, I finally got round to processing the film. Not very successful, I have to say – the processing was fine, it’s what I found when I’d done it that was a bit of a disappointment. I managed to scrape together a couple of shots from the roll, so I thought that I might as well put them on here.

The first shot is of Mevagissey. I am pretty sure that there’s a colour one from there on posts from June, but this is obviously a black and white version. The colour is better, since it’s a colourful place, but never mind that.

Mevagissey

The second is from Port Isaac on a day which probably gave us the worst weather of the holiday. Either heavy rain or horribly overcast. But, beggars can’t be choosers and it’s too far just to pop down to take advantage of good weather.

Port-Isaac

Since my last post, I have been to see my consultant for a regular 4 monthly check-up. 

He has slightly changed his story with regards to what he could see on the CT scan from last year, but it doesn’t materially change anything particularly. He does want to do another scan in December and will send me an appointment nearer the time. He is proposing to do further scans “over the next few years” and then stop doing them until he thinks it necessary again. These series of scans will be used to act as benchmarks against which future, but not so frequent, scans will be assessed.

This is a good thing for a few reasons, but mostly because he obviously expects me to still be alive in a few years after he has done the series of annual scans.

I asked him about “remission” (or “partial remission” in my case) and when that would normally be measured from. This is from the end of the chemotherapy that has caused the disease to shrink. It ignores the maintenance, because that is intended to just increase the remission period. That said, he suggested that there is some evidence to say that the Rituximab maintenance can also continue to shrink the disease during that period. So that’s also good news.

What this means is that I have now been in “partial remission” for four years and with no sign of the disease returning at the moment, this is another successful visit over and done with.

Steady as she goes, once again. Keep on watching – and waiting…

Anyone want to buy a tent?

I am getting lax about updating this blog.

That’s a good thing in itself, I suppose, as it was supposed to be a diary of my experiences with lymphoma and how I am dealing with it. If truth be told (and why not?), for the most part, I am doing pretty well on it. I don’t have much to add to the nearly five years of experiences already recorded here.

Now, that’s a thought. Five years. FIVE years. That was the lower end of my “life expectancy” or typical survival period when I was first diagnosed and I sat in front of the haematologist, although he suggested at that time that for younger people (like me) it would be 8-10 years. So that’s alright then.

But, that IS a thought…

But, we don’t need to think about things like that for very long as we are in full-on, glass half full mode here, of course. I am a-typical. The raw statistics do not apply to me. I am going to die with this, not of this. Sod you Dr Hodgkin, whether it’s your lymphoma or not.

It’s just that it does, inevitably, make you think and take a step back – again. One of those “take a step back and take stock”, steps back, not a “backward step” step back, but a pause for thought. When the five year anniversary comes round next month, I will open a bottle of fizz and think about what has happened over these five years and the support and love and kindness I have had from so many people in that time. I am a very lucky man.

OK. That’s that done. Since the last proper update, I have seen my consultant again and he was quite happy with me. And if he’s happy, I’m happy. I had thought that I could feel a swelling in my neck and my armpit, but he couldn’t so we can stop worrying about that. So that’s all good. He doesn’t want to see me again until August, so it looks as if we are now settling into a 4-monthly cycle, which obviously beats a 3-monthly one by a good month. So that’s all good too. The following one in December was when we had discussed another CT scan as an end of year report. We will see.

When I saw him, I mentioned the lymphedema in my right leg, my other constant companion these last five years. I told him that I was getting aches in that leg that I am sure are related to the condition, but he wasn’t too worried about that. I am, so I have a referral from my GP to a lymphedema clinic locally and will have an appointment to see them when they can be bothered to contact me. Apart from the radiotherapy years ago at the beginning of all this (which was never going to do any good, I have since found out)  I have not had anything done about this, so it’s about time I did.

The Forum Book is selling well and the first of the paper copies are finding their way into the hands of others. The feedback I have had so far has been very positive, so I look forward to making the first profit donation soon, just as soon as Blurb PayPal me the funds.

Still no word from the CAA, despite chasing emails. I wonder to whom one can complain about the CAA…?

So, what’s next to look forward to? There is a weekend in Edinburgh soon. No more Malmaison for us, as they are no longer dog-friendly, which is a shame, but at least the Holiday Inn Express nearby is, so we can still enjoy supper at The Shore. Then, there is a week in June in Cornwall, a part of England that we haven’t been to for over 20 years. Friends at work who go regularly reminded me of how beautiful it is, so this is the year. With a two week holiday coming up in October, unfortunately I can only spare only one week in the summer. I want to keep back some leave for the odd day off every now and again.

This was going to be a last hurrah camping trip, but we (or rather “I”) decided that we (“I”) maybe getting too old to sleep on the ground. We have never taken a dog camping before either and I can see that being a bit of an issue and the thought of driving down there and walking across a muddy field in the rain to have a shower, suddenly lost any attraction that it might have once had when the children were small and grubby. Plus, I would have had to buy some roof bars to fix the top-box to the car and a load of new kit for the tent (groundsheet, cooker parts etc) that the cost of renting a cottage soon loomed into view. “You know it makes sense”

So, a cottage in Cornwall it is.

Anyone want to buy a tent? 

Stiff upper lip

It’s been a while and since it’s the end of March, I thought that I’d better post again so that it doesn’t look as if I’ve forgotten.

I attended another joint Leukaemia Care and Lymphoma Association conference yesterday. They held one in Liverpool last October and yesterday it was in London. As always, these conferences are very good, but yesterday’s got me thinking – maybe a little bit too much. If you have been reading this blog from the start nearly five years ago, you will know that I have been to several similar events, but this is the first time that a particular subject has been on the agenda.

The last speaker was “Counsellor and Cognitive Behaviour Psychotherapist” at a London teaching hospital and he was talking about the psychological affects of living with a cancer such as NHL and how one needs to “adjust” to the new situation you find yourself in. That adjustment has no end point. You are constantly having to re-assess your situation, how you feel about life and how the cancer is affecting that. He claimed that it is always stressful and often distressing and the events can be described as “traumatic”. He even stated that some people display “Post Traumatic Stress Symptoms” which can take months or even years to come out.

Well, I don’t think I am anywhere near to that situation, but I confess to having a bit of a down day today. Probably because I’ve been thinking about what he said. I let my stiff upper lip drop.

Feeling down is perfectly natural but what is most important is to not let these negative thoughts get a hold. “Thinking and behaviour have the greatest impact on mood” and “This means that if you change your thoughts or behaviour you can change the way you feel”, he says (I should really just post the photos I took of his slides… it would be quicker!) The summary slide is below.

Image

Like a lot of this psychology stuff, this is all pretty obvious really. Stop thinking negative thoughts and you will feel happier. (I want to say “Der” here, but I am sure that it’s not that easy)

But that’s what I am going to do. Now, I wonder where that half full glass is…

 

Twitter is rubbish and brilliant. At the same time. Lymphoma news I couldn’t easily have found elsewhere.

Two updates for the price of one, today…

I’ve been on Twitter for a few years now. At first I just couldn’t understand what it was all about, but as it grew and by following friends that I knew who had migrated from elsewhere on the internet, I soon got the hang of it. It has rapidly grown into one of the biggest wastes of time on the internet (as if that wasn’t bad enough in itself) and also one of the most useful.

If you have an interest in tropical fish, or cabbages, want to know what’s happening in your town, or Liverpool Football Club (other teams’ Twitter feeds are available, apparently..) you can do so easily just by following individuals and companies on Twitter. The same is true of Facebook, but there are massive privacy issues on there that Twitter have so far, for the most part, resisted adopting. Long may it remain so.

So, by the judicious following of a couple of organisations, I have learned some interesting things over the last couple of weeks.

For example, Lymphoma Research have recently posted a link to an article on “Reduced intensity treatment in early-stage Hodgkin’s lymphoma” which, although not directly related to the lymphoma that I have, was an interesting read nonetheless.

Another source, Non-Hodgkin’s Today have lots of useful links, such as this one comparing cancer survival rates across various countries and this one on the “The evaluation and optimal use of rituximab in lymphoid malignancies”, something that is definitely relevant. There was this one, from a couple of months ago, about a new drug from a company called Gilead, which is being tested right now for those people who are no longer responsive to Rituximab.

All good stuff and very difficult to find if you are not pointed in the right direction.

Another 3 month visit comes and goes

Met with my consultant yesterday morning and had a very good chat about what the future might hold. Given that his name isn’t Madame Petrulengo, neither of us knew, but it was good to have a chat, regardless. What he did say was that he was very pleased with me. I’m not sure what I’ve done, but I’ll take that any day of the week. What he really means is that I am in as good a position with this as it is possible to be.

This was the first time I’d seen him since our phone call a couple of months ago, after the CT scan, and it was very useful to discuss the results face to face. As before, he said that he wasn’t a great fan of doing lots of CT scans, but I might be an exception. When my disease was first diagnosed, the bulk of it was in the abdomen, around the aorta, and behind several vital organs. It was large, bulky mass. But pretty well undetectable by any clinician. You can’t feel it behind the liver, stomach and all the other stuff.

Now, at present, the scans have shown that the disease is not detectable. But, if and when it does return, which is likely at some point, it will probably develop in the same space. What we don’t want is for it to get to the stage where it’s large and bulky and spreading to other areas again, the way it did the first time. Therefore, we agreed that a yearly CT scan would be a reasonable thing to do. The risks associated with the radiation has to be balanced with the benefit of being able to “see” the disease that cannot be felt manually. If the disease had been mainly in my neck, or groin, then this wouldn’t be recommended, but I’m happy to do this, given my circumstances.

I asked him when I could “look forward” to another bone marrow biopsy – probably the most uncomfortable treatment I have had to experience as part of this whole episode. There will be a blog post about it from the summer of 2009 if you’re interested. I was pleased to hear that this wouldn’t be necessary unless my blood tests showed that I was lacking in white blood cells and so far my bloods have all been fine.

Finally, after chatting about the Wirral, he asked to see me in four months time. This is also some progress from the three months I have been doing so far.

So, I can look forward to 2014 and all that holds, pretty confident that another round of biohazard in a vein isn’t part of the plan. 2013 has been a very good year in many ways. If 2014 continues in the same fashion, I will be a fortunate man indeed.

Oh, yes… If you were wondering how my Blackpool projects are getting on (I know you were), here are a couple of photos. Looking pretty good, I reckon.

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The Good. The Bad. And the something in between

The Good
The meeting with the new Consultant went very well. He’s very professional of course, but affable enough with it. I am sure we are going to get along just fine and I was “worrying” unnecessarily last week.
He took a full history from me and was grateful for the brief notes that I gave to him. We discussed the whys and wherefores of what treatment I have already had and he confirmed that the RCVP and maintenance are the “Gold Standard” of first line treatment for my NHL. Not that I had ever doubted that. So that’s good.

The Bad
He had lots of notes from my previous hospital too, including the (brief) report on the CT scan that I had 12 months ago on completion of the maintenance. He was less than complimentary on the standard of the report and showed some of it to me. There were some paragraphs that just didn’t make any sense at all, explained by the fact that the report had been done on-line by someone in India. It is, of course, common to send work off-shore these days, but I am a little unhappy that my previous consultant didn’t similarly question the content.
I was told at the time that the report made no mention of any significant disease. I now learn that there was no sign of any residual mass within the abdomen. The new consultant finds this “a little odd”. This is potentially a worry…
He explained to me that it might not be bad news though. It could mean that there really is no disease left, which would constitute being cured. But NHL is not curable when it’s got to the Stage that I had at the beginning, at least that what I was told. He said that it would be extremely unusual if that were the case. Much more likely is that the person in India didn’t read the CT results properly…
So, he is going to do another CT scan so that he can confirm the position for himself, the worry being that the disease in the abdomen can progress without any external symptoms and cause problems for the kidneys or arteries and veins. If there is disease there, he may recommend some radiotherapy to deal with that, without further chemo at this stage.
I was also informed that the radiotherapy that I had four years ago to deal with the lymphodema in my right leg, was done to the wrong lymph node. It should have been done to disease in my abdomen, around my aorta and that would have most likely dealt with the leg issue.

The something in between
So, how do I feel about this?
I am pleased, of course, that the chemo and maintenance that I have enjoyed are the right thing to have done.
I am not pleased that I had unnecessary radiography to a part of my body that didn’t need it.
I am not pleased that the competency of the person employed by my local hospital has been so strongly questioned – questioning that should have been done at the time by my first consultant.
I am also pleased that my new man clearly knows what he is doing and wants to get things right on my behalf from now on.

Let’s hope that I might just be that one-in-million people who have been completely cured through the chemo. He might even write a paper about me…

On being a “buddy”, stress and what it might do to you

Regular readers will know that last year I volunteered to be “Buddy” for the Lymphoma Association. When I had my training back in March, they said it might be some time before my first contact, but this week I was emailed by the co-ordinator and given my first buddy. (Actually, I am the “buddy”. I’m not quite sure if the term for the “buddy-needer”, but it doesn’t matter)

They called last night and we had a very good chat for about three quarters of an hour. The co-ordinator tries to match people who would like to speak with a buddy to buddies with the same or similar experience and I have to say that they did an extremely good job this week.

The person who phoned had recently been diagnosed with the same kind of NHL that I have and is going to have their first chemotherapy in September, after taking a short holiday. What struck me about this person’s history was that it was very similar to mine, especially in one important respect. They hadn’t taken any annual leave at all last year and very little the year before.

Now, I have been going on about annual leave, working while on leave and the length of leave taken recently, but that’s partly because I too had a period a few years ago when I couldn’t take the annual leave I was entitled to. About ten years ago, I had taken a new job as a Director of an office and found myself in an incredibly stressful situation. Two of my colleagues left within three months of me starting and the finances of the office were such that I couldn’t afford to employ anyone else to take their desks. I ended up doing three people’s work and running the office too. I would work until half ten at night and at least one day of the weekend, just to keep up. That year I had about 6 days annual leave – if I did want to take a day off during the week, I would have to work the weekend to make up for it. My health definitely suffered (although I didn’t know by how much at the time) and I was glad to get out. It did take me just over three years though. So, now, I do make sure that I take all of the annual leave that I am entitled to each year and do my best not to carry any over.

My buddy contact had a similar story.

Now, as far as I am aware, there is no known cause or particular reason why any individual might develop lymphoma. It’s not a cancer that has a common cause, such as lung cancer, it just happens sometimes to some people. I also know that two people having a stressful job and having the same disease doesn’t mean anything statistically, but it was an interesting aspect of the chat we had last night.

What is also interesting is this story that was published yesterday.

The Stress and Cancer Link: ‘Master-Switch’ Stress Gene Enables Cancer’s Spread

So, I have made a decision. Sod the Blackberry. Sod the emails. Sod work. Next year, I will take a proper, two week holiday, without any of that crap. The world won’t end without me. It might even be good for my blood pressure, if nothing else.

And if you are reading this, and don’t take your full holiday entitlement, or work stupid hours at the weekend, think on.

Your children will thank you for it.

Unfortunately, the consultation was as I feared …

… but worse.

The fellow I saw wasn’t even a locum, he was a retired haematologist from out of the area who they seem to have found just as a stop-gap. He didn’t know my previous consultant and he clearly hadn’t read my notes before I saw him.

I was a bit taken aback when he said “Well, I don’t know what to say to you”. Now, I am a reasonably well-informed, reasonably intelligent, professional man who has been living with this to my knowledge for these past four years. I know what’s wrong with me and I know what the “Watch and Wait” is all about and I know what the prognosis is likely to be. It’s only the time-scale that is the unknown factor at this stage.

If I had been a worried pensioner, and my consultant had said that, I would probably still be on the cardiology ward…

I told him what was wrong with me. I told him a brief history and he did a very brief examination. I told him about the lymphoedema in my leg, but he wasn’t interested in that. He asked me when I wanted to be seen again – I almost told him “tomorrow, but with someone who cares”. But of course, I didn’t.

Not impressed at all by this, I have to say. Maybe I should have taken my chances at The Christies after all, but while I am “well”, it’s not so important. Goodness only knows what would be happening if I’d told him that my symptoms had returned – what sort of care would I get then?

I need to do some research and then see if I can get referred to another consultant.

Negative and Positive thoughts after the Lymphoma Association AGM

I had the pleasure of attending the Lymphoma Association AGM and Conference in Guildford a couple of weeks ago. This was my fourth conference and this one was the best yet.

One of the speakers did a presentation on “Watch and Wait”, a subject too close to my heart, suggesting that the longer that one is on this particular regime (i.e. do nothing but attend regular clinics and wait until symptoms appear) the easier it gets. Well, I have to tell them that they are wrong. It doesn’t. As time progresses, the waiting becomes more onerous. Someone else at the conference described it as “Watch and Worry” and, while I don’t necessarily worry about it, I am somewhere between a worrier and a waiter.

I am finding that, knowing the typical progression of the disease (as I described last time), it becomes increasingly obvious that the months are going by at a rate of knots. It seems like only a week since my last blog entry, but at the risk of repeating myself, it’s actually a month away now. So, contrary to the advice of the speaker – who was not a sufferer themselves – this particular patient is not finding it easier over time. Yes, I know that there are some people who have been on “Watch and Wait” for over 20 years – poor sods – and I know that I am young and relatively fit so some of the stats might not necessarily apply to me, but that doesn’t make it any easier. However, it is important to think positive and remain optimistic. The conference was very good at providing good cause to be so.

It was very well attended this year – over 200 people in the audience. As I have found in the past, the most interesting and relevant presentations are those which give a brief insight into upcoming treatments for lymphomas. I would hazard a guess that for the vast majority of attendees, be they sufferers or loved ones / friends, the most important aspect of the event is to know that there are some very clever people around doing extraordinary work, to make our lives better for longer.

One particularly interesting development, to go along with the established treatments and those that are coming through already (such as the Zevalin I have written about before) was that of the use of genetically modified T-Cells. T-Cells are part of the immune system, with one type of T-Cell being especially good at killing rogue cells. The use of other people’s T-Cells can be very effective at killing your own lymphoma cells. But… the problem is that they kill other cells too, including those in the liver, skin, gut and elsewhere. This is not so good.

However, by genetically modifying the patient’s own T-Cells, which would normally not attack other host cells, this problem can be overcome.  The technique was described as a bit like the addition of the Rituximab marker to the patient’s T-Cells, so that these cells would only latch onto the diseased lymph cells, and no others. This all seems very exciting, and having been used for other kinds of cancers, trials for lymphoma treatment start in 2014. This is extremely expensive medicine and would only be used as a treatment of last resort in the medium term, but it does sound very exciting.

I do think that genetic medicine really is going to be a massive contributor to the wellbeing of the population during this century. Now that the cost of doing a full genetic map of an individual has come down in cost so dramatically (they are talking about getting down to £100 per individual soon), treatments specifically tailored to an individual on a genetic level will soon become a reality for normal people. Whilst it is already possible to work out the genetic composition of an individual’s lymphoma, and put together a specific treatment regime for that, the costs are prohibitive. Maybe, this is all about to change.

I hope so. And if that’s not positive news worth thinking about, I don’t know what is.

Another month… where do they go?

I suppose that it’s a good thing that a month has gone by with no post to this blog, but the whole point about a blog is that it is updated regularly – I don’t think that once a month qualifies  really. So apologies for that.

What it DOES mean, though, is that I am continuing to be well and not calling upon the good services of the health service of my consultant. It also means that this week is the week for my next quarterly check-up. Friday morning to be precise.

As I have posted before, this is most likely to be my consultant’s last clinic for me. This puts me in a bit of a dilema, really. Do I continue attending the local hospital, where I have received excellent treatment through him and the staff on the haematology ward, or do I consider a new referral (presumably via my GP), to The Christie, the large teaching hospital in Manchester. While that is 50 odd miles away from home, they are one of the two top oncology hospitals in the country. They have excellent facilities and do pioneering work.

My consultant has hinted before that “next time” he might refer me to The Christie in any case as they have the ability to administer interesting treatments such as Zevalin, a monoclonal antibody radioimmunotherapy. This stuff is like the Rituximab, but with added radiation. So, not only does it lock onto the CD20 marker on the diseased lymph cells, like Rituximab does, it also administers a dose of radiation to it while it’s at it. All clever stuff. They also have the ability to do stem cell transplants and other more serious treatments that a more local general hospital might find too much. Who knows what I might need in the future (if anything), but if there is a need for something more challenging, The Christie is the right place for it and it might be of benefit to get into their own system sooner rather than later.

Let’s see what Friday brings.

So, what else did April bring? Easter came and went without so much as a whimper and we did go to the Grand National this year for the first time in a few years. It’s a great day out (especially if someone else is paying – thanks to Adrian!) and fortunately, everyone and their horse got round safely. As usual, we didn’t win any money, but we didn’t expect to.

We also had a trip to Whitby in North Yorkshire last week with some of the Leica gang. We had a good day there and a good overnight stay at The Morritt Arms Hotel, just south of Barnard Castle on the A66. We have stayed there once before, but the owners have spent some money on it recently and it become even more comfortable  Very good food, reasonable wine and very friendly staff. Highly recommended.

Now, it’s time to take stock and think about the summer holiday in Islay coming up at the end of June. This makes it sound like life is just the gaps in between holidays and weekends away – which I suppose it can be really…

I have been invited to speak at an international conference on car parks at the end of May, so that will be interesting, if you like car parks. It’s only in London, not Sydney, or Tokyo, or somewhere similarly exotic, but one can’t have everything.

Our project in Blackpool is really starting to take shape now – the steel frames for the council office and the supermarket are almost complete and the scale of what we are doing is there for all to see. It’s very exciting and worth the time it took to get this far. We have excellent teams working with us up there and it’s a pleasure working with them all. I have put a photo of the site in the Photograph of the Week tab.

Finally, I can’t let today pass without mentioning Betsy, who is two today. She has finally turned into a lovely little dog and has become sensible in her teenage years. Happy BIrthday Betsy. 🙂

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The Psychologist

What an interesting afternoon. I attended a meeting with a psychologist for the first time in my life yesterday. Well, that’s not quite true, Ann is a psychology graduate, but that’s not quite the same.

As part of the PhD study that I mentioned previously, I attended a session at the hospital to assist in the development of an evaluation process for people diagnosed with NHL. It would appear that there are standard psychological testing systems regularly in use for cancer patients, but none specifically for those of us with NHL. With a bit of luck, and some hard work on the part of the PhD student (!) this will change.

There were two patients there, myself and a slightly older man (Man 2 – we remained anonymous for the purpose of the study) and we spent a couple of hours talking with the student and her assistant about our experiences. With just the two of us there, we both had plenty of opportunity to speak freely and at length in response to the ongoing discussion. If there had been more than just the two of us, I suspect that we, as contributors, and the student doing the research, would have got less out of the session.

By happenstance, Man 2’s experiences were slightly different from mine – everyone’s disease is different – so the session managed to cover quite a broad spectrum of what it’s like to be diagnosed. He didn’t realise that he had NHL until inexplicably he lost a lot of weight and had the night sweats (two of the classic symptoms). My experiences meant that I knew I had it before I had the symptoms and could therefore “be prepared”.

We went through several pages of “needs” identified as part of the general cancer patient questionnaire and in some detail discussed how these needs were relevant to our situation. Since everyone is at a different stage of life and disease, it was interesting to learn what Man 2’s needs were, compared to mine.

The “needs” covered sections such as the psychological support ones, financial, sexual, relationships and so on. The sort of things that one would expect in a study like this. What was most interesting was how the two of us were open and seemingly honest about sharing some pretty private thoughts and feelings with three complete strangers. I have never spoken of such things before, outside of the family. Indeed, there were probably things that I said yesterday that I have never said before. I suspect that it is inevitable that some things remain unsaid in normal circumstances. When speaking to a stranger, who is interested in understanding the experiences and thoughts, somehow it’s easier. Much less personal and less likely to cause upset.  I can’t remember what they were, but one seems freer to talk openly to a stranger somehow.

Both of us agreed that some of the “needs” were not relevant to our situation at all; body image, for example. With some cancers, melanoma or breast cancer, body image after treatment can be particularly relevant and important to the mental wellbeing of the patient. With lymphoma, for the most part, no one can tell that you are or have been ill. 

The whole session was most enlightening and extremely well chaired by the student, given that this was her first session. I will be interested to read the summary of her findings in due course.

Maybe I would benefit from finding a Dr Melfi . (Yes, I know she was a psychiatrist..) Or maybe that’s just for the likes of Tony Soprano. Either way, as I said in the meeting, I always feel better about the situation after having spoken about it.

I felt much better yesterday. Yesterday was a good day.