Tag Archives: psychology

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?

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…

 

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.