Week Begining 24/2/13

 Week beginning Sunday 2/2/13-Friday 1/3/2013

Managed to get to see Richard Thompson at the corn exchange albeit I nodded off briefly            

Side effects

Richard Thompson annual event with Raymond

From Radiotherapy:

i)                 Hair loss: As predicted, the side effects from the Radiotherapy begin to emerge. These appear to build /cumulate and I have noticed hair loss whilst in the shower each day this week .Subsequently, I went to the barber (Stewart –many thanks) who was very good at navigating around the biopsy scar (which is slightly red due to the radiation) whilst trying to make me something of the limited hair.

ii)                Somnolence :

As Expected. I find I can nod off in the most unlikely of places (I even went off at a rock gig at the corn exchange: Tiredness – exhaustion is further complicated as the Steroids have multiple side effects (see below) which affect sleep pattern etc. However this is manageable if I have space to meditate and rest, eat as needed.

From Steroids

i)                 Early Morning Waking and need (urgency) in needing to pee: I get off to sleep without problem however I usually wake in the early hours & remain awake before  aiming to return to bed (by which time my body temperature has reduced to corpse level, which Anne finds unnerving. I quickly warm and ready for our usual get up time and her morning tea.

ii)                Oedema (swelling due to build up of fluid) Ankles +++, knees, legs, neck++ face+++.This is not painful as such however I am experiencing aching knees?.I elevate the legs to manage

Moon face/fat neck/hair loss

Glastonbury 1986 with Liz and Paul

iii)               Dry itchy skin. Caused by the skin being stretched due to oedema.GP has given me a prescription for ‘double base’ which helps

GP visit: frank discussion with GP about prognosis and symptoms. Found this helpful and I feel we now have a open understanding. Option   of diuretics, however I am resistant as all drugs  have negative side effects. Need to consider treatment options?? Temodar?

Felix Cooking: Showed Felix how to cook a steak (this was left over from Joseph’s 22^nd birthday last Thursday. I think he has now got it!

Visit to in-laws

Good to visit with Rory & Felix, Mary & Jim, whom has clearly made a good recovery from the worst of his combined medical problems. Always nice to do a malt tasting,’ Tullamore dew’ though it set of the somnolence.

Elsa & Nick visit ; Anne & I wanted to show our appreciation for the help that Elsa  Nick have generously given so we brought them a picture of Hunstanton

Wednesday 19:30hrs.

Open session at the Devonshire with : Raymond T, Paul M, Paul R, Alun M, yours truly. Very enjoyable evening

Paperwork/Finance Anne & I have managed to put off (avoid?) looking at paperwork, finances, car, future ,wills ,etc etc, therefore for the latter part of the week we have decided to give ourselves some space to address this. Probably need independent financial advice.

Looking forward: Spring ,Marys,

Week Beginning 24/2/12-

Week beginning Sunday 2/2/13-Friday 1/3/2013

Richard Thompson :annual event

Managed to get to see Richard Thompson at the corn exchange albeit I nodded off briefly            

Side effects

From Radiotherapy:

i)                 Hair loss: As predicted, the side effects from the Radiotherapy begin to emerge. These appear to build /cumulative and I have noticed hair loss whilst in the shower each day this week .Subsequently, I went to the barber (Stewart –many thanks) who was very good at navigating around the biopsy scar (which is slightly red due to the radiation) whilst trying to make me something of the limited hair.

ii)                Somnolence :

As Expected. I find I can nod off in the most unlikely of places (I even went off at a rock gig at the corn exchange: Tiredness – exhaustion is further complicated as the Steroids have multiple side effects (see below) which affect sleep pattern etc. However this is manageable if I have space to meditate and rest, eat as needed.

From Steroids

i)                 Early Morning Waking and need (urgency) in needing to pee: I get off to sleep without problem however I usually wake in the early hours & remain awake before  aiming to return to bed (by which time my body temperature has reduced to corpse level, which Anne finds unnerving. I quickly warm and ready for our usual get up time and her morning tea.

ii)                Oedema (swelling due to build up of fluid) "Moonface" Ankles +++, knees, legs, neck++ face+++.This is not painful as such however I am experiencing aching knees?.I elevate the legs to manage

iii)               Dry itchy skin. Caused by the skin being stretched due to oedema.GP has given me a prescription for ‘double base’ which helps

GP visit: frank discussion with GP about prognosis and symptoms. Found this helpful and I feel we now have a open understanding. Option   of diuretics, however I am resistant as all drugs  have negative side effects. Need to consider treatment options?? Temodar?

Felix Cooking: Showed Felix how to cook a steak (this was left over from Joseph’s 22^nd birthday last Thursday. I think he has now got it!

Visit to in-laws

Good to visit with Rory & Felix, Mary & Jim, whom has clearly made a good recovery from the worst of his combined medical problems. Always nice to do a malt tasting,’ Tullimore dew’ though it set of the somnolence.

Elsa & Nick visit ; Anne & I wanted to show our appreciation for the help that Elsa  Nick have generously given so we brought them a picture of Hunstanton

Wednesday 19:30hrs.

Open session at the Devonshire with : Raymond T, Paul M, Paul R, Alun M, yours truly. Very enjoyable evening

Paperwork/Finance Anne & I have managed to put off (avoid?) looking at paperwork, finances, car, future ,wills ,etc etc, therefore for the latter part of the week we have decided to give ourselves some space to address this. Probably need independent financial advice.

Looking forward: Spring ,Marys

you 

you meet the nicest people 

Update: it’s been busy hence blog posting delay

Week beginning Monday 16/2/2013

 a.m: Train to Newmarket Community Mental Health Team.  It was great to see my colleagues and to hear their news, sit and share lunch as ‘normal’. Thank for all the support, lift to the station. Plus it’s good to hear that the patients I was treating are now handed over and receiving the treatments. I have some letters to write and work to complete to will be returning to finish off any lose ends and whilst getting the train takes its toll (exhausting) and I find I need to plan /organise

p.m: Oncology outpatients for Radiotherapy #5. Going to Addenbrookes (parking, tickets, outpatients usually some delay) then return is typically onerous, however things were made easier by the generous offer of a parking space near bye. Thanks to Linda for that.

Tuesday 19/2/13

Jan (spurs!) and Viv

Planned visit to my third work base in Mildenhall where I have been running  a CBT clinic for about ten years and prior to this as a CPN, therefore  I feel very attached to the place & and my colleagues who work there. There are no trains to Mildenhall therefore my Good friend (from school) Paul, kindly offered to give me a lift. With the driving ban & my prognosis, I suspect I will have limited opportunity to re establish a role at this base so I took the opportunity to empty my desk and say goodbye to the lovely people who work there. I hope to keep in touch. Had Lunch in Red Lion with Paul & Patrick

NCMHT

Wednesday 20/2/13

AM: Train to Bury St Edmunds. Cycled to hospital Road up Parkway (very long hill) managed. Good to see colleagues at Hospital Road in Psychology dept plus Sarah Lord (let me know when the retirement do is) & John Mallet .The three of us worked together in the NCMHT in the early nineties.

thank you

thank you

no thank you

family

Did not get to clinical supervision? CBT ‘Theory to Practice Group’ as I had the wrong date in my diary. Will catch up with Jan/Jill/Anne/Sara next time?

PM: Cycle to Blomfield BCMHT.   Great   to    see colleagues, to hear their news and that of the patients, plus wade through emails catch up with changes and many are    occurring. Lunch with Chris as normal at the Bowling  Green Abby   Gardens. It was freezing.  Therefore we complimented the salad with hot soup and sausage role. Thanks Chris. This of course attracted bold robins & Blackbird .Quick hike round the garden where we saw x4 Magpie (four for a boy?)

Train back to Cambridge; then back to Oncology for #6  Radiotherapy. This went smooth no delay and the mask was comfortable.

19:30 Wednesday evening is the open gathering at my local from 19:30 .Good turnout, good   conversation, beer

Ivan Top man

Ivan & Amy 

new hat!

A Team

Get dressed!

Thursday 21/2/13 Josephs 22^nd Birthday. Ivan and Amy return to Cambridge having visited Ivan’s extended family in the suburbs. Took  My USA guests on a tour of the many charity shops on Mill Road before succumbing to a pint in the Earl of Beaconsfield (Ivan seemed particularly keen and as he is due to fly back on Sunday I feel obliged ). Managed to persuade Anne to join us who managed to persuade Tom to come along, as he had just dropped off a homemade yogurt and lemon cake(many thanks this was  thoroughly  enjoyed by all ) This was an excellent outcome ,seeing and chatting to Tom .Steak dinner at Josephs behest though he was unable to attend being off to Ely .Still it made a nice treat for him the next evening. Girlings decide to stay the night with us rather than go out in the wintery/snowing conditions & the walk to my sisters

Friday 22/2/2013

Liz Scipio visits .We began working together in the NCMHT in 1998 where I began as the junior ‘F grade ‘CPN with Liz as the senior Rehabilitation CPN.  Those were happy   days. Liz happens to be one of the nicest people I have had the pleasure of working with. I hope we continue to remain friends and in contact. Made a candid video about my treatment/prognosis drawing on Ivan’s twenty plus years experience.  Very powerful and helpful.  Many   thank s to you Ivan & Amy. I love you to bits for all you have done for me and the family (support, honesty, sensitivity, stress, sweets, aroma therapy, German contacts etc

Spent the evening watching  DVD ‘Moon rise Kingdom’. This was my second attempt, I am still not sure what the heck it’s trying to convey?

interview with  Ivan

Saturday 23/2/2013

 Sad to see Ivan & Amy off in their little car to London then next day Santa Barbara,  is a long way away

Midday: occupy myself by joining the counter demonstration to the EDL. Good to see such a large Cambridge turnout and Rory/Felix in attendance. Generally   good natured mill Road  traders providing sustenance to the Marchers.

Saturday Night: Invited to dinner in Ely with Josephs in laws to be.Very enjoyable. We went by Train. I took some Marble beer in a carry out which seem to go down well. Thanks to everyone for a wonderful evening.

Sunday 24/2/12

Usually the steroids wake me for a pee at 04:00hrs (give or take) as well as causing my neck, ankles and face to swell. However I must have been so exhausted I managed my first lay in with Anne who is equally shattered by this whole experience .I managed to get to the Coop for a paper and a few basics otherwise I am off out to see Richard Thompson with my good friend Raymond’ normal stuff’ we have done this half a dozen times

More email

US Visitors

Ivan & Amy

Twenty five years ago, Ivan was best man at our wedding. We had met in the social club at the North Middlesex hospital where I was training as a Registered General Nurse and he as a Radiologist-Radiotherapist. After a period of travel and a somewhat convoluted story involving another woman, he met Amy, they married and settled in Santa Barbara, California where he works as a Radiotherapist. Ivan offered to fly over from the states once he had heard about my diagnosis. Fortunately, he was able to pause and plan and again Elsa (my little sister) stepped up and offered to accommodate Ivan & Amy for the time they visited Cambridge. Ivan has also had an opportunity to see his own family and friend’s .Ivan was permitted to observe a treatment session and sit in on the oncology outpatient review .All very helpful from my perspective .Equally important Ivan was able to attend the Wednesday night gathering at the pub, see some sights. Many thanks to Amy for everything (the stress sweets have been going down well) and to Ivan for his sense and insight into the treatment/prognosis questioning,

 Ivan & Amy

Coincidentally...Simon

Amy & Ivan

Curry anyone

Trinity porters .Keeping an eye on the tourists

no entry to you sir

how about a nice pasti to fend off the cold

radiology -oncology dept

thanks for the shirt 

pub 

curry 

Another ex patriot friend (from Swindon) who know lives in new Jersey happen to be in the Uk on Business and was able to make the journey up to Cambridge for a pint or two.Thanks Simon for joining us

Family Break

Family break

I might end up in a pop video.

cheer up

family snap

proof

Bale?

Plenty of space

boys 

sunshine ,sea air ,perfect conditions

What an absolutely fantastic break we had in Old Hunstanton as a family .All three boys rearranged their plans /work .The weather could not have been better, warm, sunny, clear skies .Many thanks to Elsa and Nick for the five star accommodations. Near to a couple of very good restaurants selling excellent local ale so the main bulk of the cooking and shopping was taken care of. Breakfast being a shared undertaking and enjoyable .I stumbled into the making of a pop video ( in the local social club) by a   band from London''To Kill a King' Myself and the boys were invited to participate as ‘extras’. Only I succumbed in the end which was somewhat ironic as the theme was about death and involved a coffin