Category Archives: lymphoma organisation

Blitz. And a place called Hope

Well, more of a war of attrition really, but after some extremely hard work on behalf of Ann, double digging this plot and removing at least three wheelie bin loads of roots and weeds, the Lost Garden of Comberbach is finally looking pretty good.

We did manage to plant the trees last week and today, I laid the turf. It looks good already, but will obviously need time to settle down and fill in the joints.

So, in nine months, along with all the other things that we have done, we have gone from this

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to this

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Now, that is what I call “progress”.

Tomorrow, the slate threshold for the French doors will be collected and I will fit that on Monday. I will also be able to finish the final pieces of skirting to the living room and the painting can completed.

The new front door will be installed on 13th June, which will make a huge difference to the look of the place.

Not sure what we are going to do with ourselves now that this is coming to an end. Move on to the back garden, probably.

And all of a sudden it’s June next week. Again.

Time to think about the summer holiday. Orkney this year, in a cottage that is walking distance from Skara Brae, so that should be good in the long, long evenings up there in late June. It’s a long drive just for a week, but we do get to stay at The George in Inveraray on the way home, so that’s good. However, our stop on the way up is north of Inverness, so that will be a bit of a trek one Friday in a few week’s time.

June is also the time to see my consultant for 10 minutes. I am sure that it will be business as usual when I see him. To be honest, I don’t think that six-monthly check-ups are even worth it any more, but seeing as BUPA pay him about £250 every time he sees me, I am sure that we will carry on like this over the next few years. I am pretty sure that if this were an NHS clinic, I’d be on 12 monthlies by now. What these appointments do, though, is get me thinking about “things” again, despite the fact that I’m feeling very well. I AM very well. But the upcoming clinics just get you to think about what might be to come a bit more often than during the rest of the year.

One interesting thing that seems to be emerging from studies of people who have had stem cell transplants ( a real possible treatment for me some time in the future ) is that they seem to be presenting with heart disease much more often than the general population. Given that the process involves harvesting your stem cells, growing them in the lab, while simultaneously killing off your entire immune system, such that you have to spend three weeks in complete isolation in hospital as they reintroduce your stem cells and you grow yourself a new immune system, is it any wonder that other parts of the body decide to rebel? Heart problems could be a price worth paying to avoid the consequences of not having a transplant, though. I don’t know. If ever that were to be a possibility, that’s a long way off, so I shall file that under “not yet pending” and not worry about it.

What I have also learned over the past weeks, having attended the Lymphoma Association’s Annual Conference in Nottingham at the beginning of the month (and elsewhere) is that it is a good idea to volunteer for clinical trials if one is available when you next need treatment. There is a lady who attends the support group in Manchester for example, who was on a trial for a new antibody therapy and her disease has been all but wiped out completely. To be fair, so has mine at present, having had the best standard treatment available at the time when I needed it. I have said this before, and I will no doubt say it again, but I am a very lucky man. I know it. And I am very grateful.

A question was asked at the Conference as to whether there was a link between pesticides and herbicides used in agriculture and lymphoma. The expert consultant on the panel (who also happens to be on the NCRI Committee that I joined recently) suggested that there was a definite link, when the population as a whole is considered. It is impossible to say whether an individual’s lymphoma can be attributed to these chemicals, but the growth in incidents of lymphoma over recent years mirrors, but lags behind, the growth in the use of agrochemicals. Never was there a better time to eat organically and stay away from farms than in the 1960s and 70s.

Oh well… If only we had known then, what we know now.

It doesn’t really matter what the cause is, or was. I have this and while it’s dormant now, it’s not going away permanently and I’m fine with that. What does matter, and I believe and hope that things are improving, is that we as a society, continue to reduce the use of agrochemicals and give our children and grandchildren a chance of avoiding lymphomas, or any other disease for that matter.

If the link with farming is proven, (can you prove that?) wouldn’t it be nice to live long enough to see that the incidence of new lymphoma falls year on year as the use of agrochemicals reduces too?

Bill Clinton once said “I still believe in a place called Hope”.

So do I.

(Blimey, I’m sounding like a tree hugger)

(Blimey 2, I have actually written something about lymphoma in this blog about lymphoma. What is the world coming to?)

 

 

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?

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.

Finally….

Had a call from the radiologist yesterday morning, advising me that he will give me an appointment on Monday morning, next week. Couldn’t tell me at what time… but someone would be in touch to let me know.

Well, no one has been in touch, so I phoned the hospital again this morning. Progress! The now know of me, but still can’t tell me what time on Monday.

“We are going to write to you with an appointment”

“But, it’s Thursday already. The letter will never get to me”

“Well, you’ll have to phone tomorrow afternoon then”

Very helpful

I explained that some of us have other things that we need to organise in our lives, and can’t be hanging around all morning waiting for appointments, but that didn’t go down too well. It’s as if they think that patients are just sitting around with nothing else to do

So, Monday, sometime, will tell what’s next. One thing that is for sure is that we are no longer going to be able to fit this in before mid October.

Went to a meeting of the Lymphoma Organisation at Christie Hospital last night. I probably wasn’t actually the youngest there, as I thought I would be, but I wasn’t far off. They were very helpful and very friendly (why wouldn’t they be?), and I will certainly go again next time, in November.

Broke a tooth this morning – need to get that fixed too.