And it Stoned Me...

Let's not forget about the drugs!  Seems apt for a Glasto. weekend.  As a trained pharmaceutical scientist, I can firmly attest the more the merrier. Prescribed only of course.
My favourite at the moment is Venlafaxine.  At first I took one a day but it wasn't enough. Was on 3 a day for a few years but have gone back down to 1 a day which allows me to get through a day of work without crying (Bonus! Never a great look in the Stairwell of Tears, which is like the Bench of Tears on Eastenders but grimmer surroundings).


Venlafaxine, or (R/S)-1-[2-dimethylamino-1-(4-methoxyphenyl)-ethyl]cyclohexanol as it is known to it's friends, is an anti-depressant but has another advantage in that it reduces hot flushes. I was always good at those before my illness but now when one comes upon me I really do NEED to fling clothes off immediately. At least I can mostly manage to curb that impulse as required.

Only just had a look at the potential side effects on Wikipedia - let's hope they're wrong about a few of these, which include:

• Headache — an often transient side effect that is common to most serotonin reuptake inhibitors and that most often occurs at the beginning of therapy or after a dose escalation.
• Nausea — an adverse effect that is more common with venlafaxine than with the SSRIs. Usually transient and less severe in those receiving the extended release formulations - oh, so that's alright then.
• Insomnia
• Asthenia (weakness)
• Dizziness
• Ejaculation disorder
• Somnolence
• Dry mouth
• Sweating
• Constipation
• Nervousness
• Abnormal vision
• Anorgasmia
• Hypertension
• Impotence
• Paresthesia
• Tremor
• Vasodilation
• Vomiting
• Weight loss/gain
• Chills
• Palpitations
• Confusion
• Depersonalisation
• Night sweats
• Menstrual disorders associated with increased bleeding or increased irregular bleeding (e.g. menorrhagia, metrorrhagia)
• Urinary frequency increased
• Abnormal dreams
• Decreased libido
• Increased muscle tonus
• Yawning
• Abnormality of accommodation
• Abnormal ejaculation/orgasm (males)
• Urinary hesitancy
• Serum cholesterol increased (especially when treatment is prolonged and it may be dose-dependent)

So sweating, chills, weight loss and gain, depersonalisation (no personality?) Well, that explains me then.............

Have a great weekend everybody

K xx

Raising Awareness (1) - Paul's Cancer Support Centre

For a long time I couldn't talk about cancer without getting upset.  In January 2014 I turned some sort of corner and was able to present my experiences to a group of people invited to the 30th AGM of Paul's Cancer Support Centre; including local GPs, Macmillan nurses, centre users and other volunteers, along with some of my lovely friends who turned up to support me.  I was asked to talk about how the Centre had benefited me, which of course I was happy to do. I honestly don't know where I would be without some of the people I met there and the techniques I've learned to help in stressful situations - most days I think I use something I learned! Yes, life working in the NHS doesn't get any easier!

The photo below of myself with Mr. Nicholas Hyde, Clinical Director at St. George's Hospital and Dr. Anthony Cunliffe, Macmillan lead GP for Wandsworth, was taken for our local Wandsworth Guardian newspaper which published an article to raise awareness of the Coping With Cancer Stress Course.  The course is now available on-line.  

I indulged myself with a favourite quote from Tove Jansson's Moomins at the end of the talk:
"For a while she considered being ill, but then she changed her mind".

I was trying not to laugh with my hair tangled in the flower arrangement behind!

Community Garden

I joined my small local community garden in 2011 (Bramford Community Garden), as a way to meet new people who didn't know I'd been ill.  I've always enjoyed pottering in the garden and found that growing seeds and vegetables in the garden was an absorbing pastime. Volunteering had been quite a theme on Coping With Cancer Stress Course - finding something you enjoy and creating a purpose and feeling of accomplishment has been shown to help many people suffering after serious illness.

Photo Credit: Ollie Smallwood (http://www.olliesmallwoodphotography.co.uk/)


At first, I enjoyed just digging and planting on a Sunday, getting some fresh air and meeting some new people.  I genuinely forgot about what I couldn't do physically and concentrated on things I could do. I began to notice small things changing each week; the weather, a bud opening, different insects.  Taking photos of these became an interesting focus and then we started a weekly newsletter, so I began to look for more arty shots, inspired and generously encouraged by Ollie, a fellow volunteer who is a professional photographer. 

It has opened up many other opportunities.  We encourage local corporate volunteers to come and help out, so that is a great way to meet people I wouldn't normally and we arrange activities to help improve the garden and also fun things to do for the younger visitors.  One photo competition for the girl guides provided our banner photo on the Facebook page.   We visited Hampton Court Palace Flower Show as a community group and were kindly allowed to go on a preview day before it was open to the public in exchange for some media promotion (Hampton Court visit).

I now look forward to our gardening sessions, knowing that the local people appreciate what we do and finding something new every week to enjoy.

Tea With Ovacome 2013

This photo "rocking the kaftan" (designer: BEyouT) was taken a year ago at the "Tea with Ovacome" day that my friend organizes at the Mayfair hotel.  I am now a "veteran" model and took part again this year in the fashion show that forms part of the entertainment during the gorgeous spread of cakes and sandwiches that the hotel lay on.  This year 250 people attended, with all proceeds from tickets and raffles and auctions going to Ovacome, a charity that supports women with ovarian cancer.  It is dear to my heart as I attend a monthly support group for younger women with ovarian cancer.  Although my cancer was uterine, rather than ovarian, it is also rare in younger women and there are no suitable support groups for women like me who are (were) pre-menopausal.  The younger group was set up by a very dear friend who is no longer with us, and I like to go to help keep her spirit alive in the group, but also it is an uplifting experience and I have met some amazing and inspirational ladies who I am proud to call my friends. 7 of them were my co-models in the fashion show, which took place on Saturday March 16th this year.  We had a lot of fun and there was plenty of giggling and nerves back stage, but by the time we had practised our walks and attitudes all morning and chosen some suitable music, we were well into the spirit of the thing and were cheered on by the welcoming crowd.  Hopefully a good lot of money was raised for the charity.  My colleague from work generously donated her time and talents to create some Mehndi tatoos and to help us with our make-up, which she did so well last year.
I'm already looking forward to next year........

In Praise of Slowness

I've been thinking about Mindfulness and picked up a book from the library this week called "In Praise of Slowness" by Carl Honore (2004), which provides a thoughtful discussion about how our lives have speeded up, how we try to "save time" and are often "time-poor". I have attended several courses about Mindfulness while I have been recovering, which is all about attempting to remain in the present moment and not thinking about what is ahead or behind us; after all, the past is gone and the future we are imagining probably won't happen as we imagine it. This is a type of meditation which I have found useful to calm my mind a bit and stop certain thoughts going round in circles. 
After I first went back to work, I often found myself thinking "how am I going to get through today?".  The answer has been varied, but at first I found it absorbing to spend time in my tiny back garden after work, and to plant and nuture vegetable seeds.  I think it basically gave me something physical to do which was not too strenuous and did not require any detailed thinking, but was absorbing enough to reduce whirling thoughts about my illness. 

I have since expanded the gardening a little bit by volunteering at a small local patch of community garden, and through this met some very nice people and taken advantage of a few opportunities that would otherwise not have presented themselves; for example, a group of us were asked to go along to Hampton Court Flower Show to take part in a photo-shoot for a national newspaper.

I really appreciated and enjoyed the day, which enabled us to wander around the show gardens and talk to the designers and exhibitors before the Flower Show opened to the public.  I seem to have digressed a bit.  The point I was thinking about which I have found to be true is that in our world of "buy what you want when you want it" I have found infinitely more pleasure in watching my own peas and strawberries grow than just getting them from a shop and I really appreciate their smell and taste and all the more considering the hard work that goes into looking after them; fighting a battle against the British summer weather, either too hot or too wet, as well as pigeons, slugs, snails, mice etc.  In this way I have tried to slow down my thinking and as a bonus side-effect manage to produce a small amount of food for myself.   I don't think anyone has ever been as excited about a pea as I was when I saw my first pea pod ripening in that Spring a couple of years ago.  In a good vegetable year (not last year, unfortunately) I am able to have something on my plate almost every day that I have grown myself, it may be a few lettuce leaves, some mint or chives, a handful of blackcurrants or some lovely juicy strawberries or tomatoes.  I enjoy them one by one and really it has made a wonderful addition to my life.

Words and Mental Images

I was thinking about how my life was before cancer (BC) and after the diagnosis (AD). At one of my first meetings of the Healing Journey, we had a discussion with a clinical hypnotherapist. He explained to us that even if we see an image of something that unnerves us or causes us stress, the body reacts instinctively to that image and by-passes the conscious thought pathway; for instance, if you hate spiders and see a picture of one, there are physical (even if undetected consciously) changes in the body which react to stress and ultimately prepare us for the "fight or flight" reflex.
By even thinking about how I would use the initials BC or AD in this blog as mentioned above, possibly my body is also reacting to those words with instinctive revulsion and upset, bringing to mind as they do the horrible all-to-near-the-surface memories of my illness.  From now on I have consciously decided to re-brand them Before my time as Cinderella (not going to the ball, stuck at home feeling lonely and upset) and after my time in Disneyland (my time in hospital and recovering at home was certainly another world which felt very unreal).  Surprisingly, I can already feel my mind picturing the cartoon Cinderella and Disneyland and maybe this marks yet another change in thinking.  This does not mean I am denying all the things that have happened to me, rather just a re-branding exercise which may mean I can begin to think and talk about things a bit more freely without the added stress induced by extra unwanted images and thoughts.

The Best Thing I Did

I went back to work 4 months after diagnosis and surgery. (That wasn't the best thing I did). I wasn't coping well; spending time crying in the stairwell or the toilets every day gave that much away, so I decided to seek out additional help. This was after I had tried counselling at work and the counsellor had been made redundant (!). At one of our last sessions I got the feeling his mind was probably on something else (to give him his due, he said he would have been upset if I thought that, but I probably wasn't in the mood for talking much anyway).
 I looked on the internet at home and found a small local cancer support centre(www.paulscancersupportcentre.org.uk).  I booked an inital appointment for a chat.  There I found some very caring and lovely people, who suggested that I may wish to come along to a new course that had been set up - The Healing Journey.  I was a bit sceptical as I'm usually quite a reserved sort of person and was also loathe to be defined by my illness. I couldn't think of anything worse than being amongst "ill people". Anyway, I was beginning to run out of ideas and options for how I could move on with my life, so I decided to go along to the start of the course, which was September 2010, approximately a year after my surgery.
The Healing Journey was to become an important turning point for me. It is a course which was initially developed by Dr. Alastair Cunningham, based on more than 25 years of clinical experience and research at the Ontario Cancer Institute, Canada’s largest cancer treatment centre.  Dr Cunningham, a psychologist and Professor Emeritus at the University of Toronto, designed a structured educational programme consisting of psychological and spiritual (not necessarily religious) exercises and techniques which are designed to make significant positive changes in the quality of life of people with cancer, at any stage after diagnosis.
These exercises and techniques include:

• meditation
• relaxation
• mental imagery
• setting goals
• planning lifestyle changes
• identifying supportive and unsupportive relationships
• managing distressing thoughts
• making a spiritual connection in whatever way is appropriate.

For more information about this research and about the Healing Journey in general, visit www.healingjourney.ca.
Paul's Cancer Support Centre now also offers this course and others online, and I highly recommend it to anyone struggling with emotions relating to a cancer diagnosis. (Please note, I am not paid to say this and do not work at the centre, I am just going by my own personal experience of the Healing Journey).  I'll visit some of the techniques and exercises that we did in the course of this blog and as they crop up day-to-day.