Oncology Review

After the period of intense treatment and appointments at NGH, my last radiotherapy session on 9th July saw the beginning of a 6 week period of respite from hospital appointments.

It has been nice not to have my life dominated so intensely by appointments, yet having invested so much time and effort into all this cancer lark, it also proved to be a bit of an anti climax…It is almost like …'what do I do now!'….I remember Mandy, my booby buddy tell me this would happen way back before my treatment even began.

I have of course been a busy bee and I have been to Spain and France, but from a medical point of view I feel a little left out on a limb!!….Logically I know that I am not …. After all there is a clear treatment plan for me…never the less it seems I am mourning the loss of contact with my medical Team and the 'oncology bubble'!

You will note that there has been a distinct lack of posts this month, and I wish I could say that this is because I have had better and more exciting things to do, but the truth is that things have felt quite wobbly in my world….Despite many attempts and 3 posts in 'draft status, I have simply struggled to arrange my thoughts and words. I get a lot out of blogging, and this, my longest bout of  'writers block', has been frustrating and even 'stressful'!

I'm sure that the post treatment withdrawal has had a part to play in that ,but I also recognise symptoms of post holiday blues.  I'm sure it is also interlinked with the 'limbo period', I appear to be in in terms of my personal circumstances.

I'm not back at work yet and I am still living with Steve until the tenants move out of my own house. I am thankful of the 'practical' limbo arrangements, as they have given me an opportunity to plan my move and return to work along the route of least stress and financial burden. On an emotional level though, it can be tough making this arrangement work given the associated break up baggage and Steve's caustic moments!

Saying that, I know these are just bad day's…I have some great friends and family around me and there is enough strength, confidence and peace at the core of this 'old cookie' to help ride out these times , for there is certainty for me of fulfilling and exciting times ahead!

I'm building windmills - Just the proverbial ones though Jo Jo (doesn't like wind farms)

Having given myself a 'blog break', I am pleased to report that my thoughts and words are flowing nicely today….. I think something rather beautiful that happened yesterday, may have been a kick start ……You see….. I had a play date with baby George and his yummy mummy Gilly Bean and she announced that I have earned  'Aunty' status with baby George!!

Yay …. Ok so theres no genetics involved, but as in my bond with my XMIL and XFIL, when there is a choice about a role someone plays in your life, then this is honour is special!

I'm rather pleased it wasn't 'grandmother' status….. A few times I have been out with Gill and George in public, Ive been asked whether I am the grandmother!! Tut!

Anyway, as per the whole purpose of this post; I attended my 6 week post radiotherapy review on 18th August with my XMIL, Sue in tow!!

The appointment was pretty routine, but they always  have an underlying sense of tension  and dread about them for me and I was glad of Sue's company.

The Dr, was happy with my progress following her physical examination of my 'manky boob' and she has referred me back to Dr Dawson (YAY!!) for discussions about reconstruction….another Yay!!… My reconstruction won't happen for some time…. thank goodness….but at least I'm in the system!!

I spoke with the Dr about an article I read in the  Daily Mail that reported on a 'pioneering drug therapy' trial, that combines the use of Pertuzmab and Herceptin for first occurrence HER2 breast cancers.  It seems Pertuzmab is only approved in the UK  for stage 4 and secondary cancers and this article reported benefits of a 'joint attack on a primary breast cancer', like mine.

I was aware that this was a trial, so I wasn't surprised about the Dr's negative response about it's availability for me, what I was surprised at was my own rather defensive response about the manner of her reply.

The Dr had not heard about the trial and I interpreted her response to be quite rushed and dismissive of my search for an intellectual discussion about my long term treatment options, and probably some reassurance.

With my prognosis at 5 and 10 years being what it is, of course I'm going to be asking questions and  I felt annoyed at her factual, probably text book, standard answers e.g.

DR: "it has not been approved for your type of cancer"
ME: "so is about the cost of the drug"
DR: "No, there is no research about the benefits"
ME : "This is what the article is about"
DR:  "There are lots of claims out there in the media it may be more harmful than the benefits"

etc...So yes all logical answers… in my mind I was probably 'fighting for my life' and the 'standard', text book responses just didn't satisfy me. I left the appointment feeling tense about the exchange and on reflection, the only satisfactory conclusion to that conversation for me would have been some recognition of my fears for the future.

Anyway, on the subject of prognosis, and a query I had about the pre treatment prognosis, the Dr pulled up the stats on her lap top again and when asked let me have a print out of the results.

The stats. were laid out in graph form and compared prognosis with and without the range of treatment I have been given.  Statistically speaking 66% of women with my type of cancer are alive at 5 years and 29% at 10 years…. It is quite scary to have the numbers in black and white, but not as scary as the  15% at 5 years and 1% at 10 years without any treatment.

The Dr was keen to point out that stats are based on 5 years worth of Tamoxifen and suggests that this is improved with the 10 years that I will be having  the drug. You can see there why I was defensive about my query about Pertuzmab!

I will now have 3 monthly reviews with Oncology for the duration of my Herceptin treatment and I have an appointment with Mr Dawson the surgeon on 4th September!

With the appointment all over and done with, my day ended most excellently at a BBQ gathering in the company of Danny, Becky , Sue (XMIL) and Rob (XFIL).

one of my most favourite pictures- knowing your son is happy -priceless xx

NEWS: My#warpaint4life picture will be in The Sunday Times magazine tomorrow, 31st August 2014.

'Boob venue' a La France!

My brother John, finally moved his family to France in March this year and 3 days after my return from Spain, I jetted off for my first visit to them, in their new home.

John and Susan, my SIL have chosen Vaor, a small village in the Tarn region of France to raise my wonderful nieces Lucy Alannah, Gracie and Scarlett (L.A.G.S).  John Pover, senior, Dukie, Mulligan and Mildred make the French dream complete!

I spent a lovely week with my family and  part of the week we were joined by John and Susan's friend Pauliene, her 3 daughters, and one of their friends. With John Pover senior away, John was blessed with the company of 11 ladies and we spent a few day's on 'Von Trapp family style' outings…all ready to burst into song! lol!

My 'jet setting' had somewhat caught up it me by the time I got to France and so I enjoyed some good old fashioned 'convalescence' …. I still get quite tired, and whilst I 'really' do try, I'm not good at pacing myself when there are simply lots of things I want to do, so I was reminded to rest, by the threatening tingle and appearance of a cold sore!


So…a 'siesta' each afternoon on my SIL's hammock, positioned under a tree, overlooking the rambling Tarn countryside, was just the trick to see me through the week with my energetic nieces.

That week saw a boost in my post cancer treatment confidence in many ways.  It was all about falling into a familiarity with the physical changes, mind and heart …. making friends with my 'new self'…and  this was somewhat easier whilst I was surrounded by unconditional love and encouragement from my family.

I had learnt from my time in Spain that wearing 'Vivian' was not the most pleasant of experiences. The heat out there, saw me meticulously plan activities around the availability of air con and away from intense heat!!.... I did wear  'Vivian' throughout my time in Spain.... and it just was simply too hot, but I wore it regardless because my hair growth still had the 'Gollum look' about it and I was not ready to go solo!

I  had a hair growth spurt whilst I was in Spain and this made wig wearing more uncomfortable especially with the random treatment related hot flushes, that would strike. So by the time I got to France, there was no more searching for air con…Vivian stayed off for most of it and was only worn for 'best' on the Von Trapp family outings! 

I just loved that  I could be 'me' around L.A.G.S, who as always, were quick to express curiosities and comment about my hair and my eye brows in such an 'interested' way. It's the sense that I did not have to hide the 'White Elephant' in the room and it made me feel so relaxed and that week certainly influenced a new found confidence in going 'solo'…despite the '50 shades of grey!

My SIL outed me on FB with a 'feather earring selfie!

I had not planned to swim in Spain, but at a last minute change of mind saw me travel 30 miles to one of the nearest outlets the day before I flew out, in search of a 'mastectomy' tankini. I had been looking online and had an idea what was out there in terms of mastectomy swim wear, but it really surprised me how disappointed I was with the choice, styles and availability in shops. 

The lady in the store was extremely helpful, but the choices and sizes on the day were limited in store. I came away with an 'it'll do' tankini, by Anita and what I learnt  is that acquiring such as product is not a cheap venture and certainly should not be a last minute consideration. 
 
With the £85 price tag, I certainly felt that I deserved to have been  more satisfied with the purchase than I was, but hey, I have a boob missing so not surprising! Ironically it wasn't the fact that I had to adapt my swimwear choices because of my missing boob, or even because of the radiotherapy burns, it was the 'cancer' weight gain that played mostly on my mind and lead my choice! 

Not an issue I'll have for long though and I look forward to 'bikini shopping' next year when I have more hair, hopefully trim up and have my new boobs !! 

Christmas Shopping in August!

My brothers home has a swimming pool and thanks to efforts made before my trip to Spain, I was well prepared for a swim with my excitable nieces!! 

I  love swimming and when I did swim for the first time with LAGS, It was an initially somewhat vulnerable moment but then such an unbinding experience. I was as stripped bare as I could be in 'public' and I had no hair and make up (may be just a little!) and the only thing on our minds was escaping from each other during our game of 'Marco Polo'.

This made me reflect on my tendency to spare the feelings of others that have struggled with my appearance and diagnosis, by 'hiding' the physical and emotional impact that cancer has had on me, even at the worst times.  Feeling so relaxed in France about it all, has certainly made me think this approach may have carried a price in terms of my confidence and emotional well being.

I learn't that my world did not change when I went to the Vaor village festival without Vivian, nobody stared and being my first public solo outing, it felt so liberating! Vive la liberte !! ha ha! I was of course in France and wouldn't have understood fully if I had been told me I look hideous!!

My brows and lashes had also made a noticeable comeback by the end of the trip to Spain.  I loved that Gracie became so excited, in the moment she spotted that my eye lashes had grown since the last time she saw me!  Even more priceless, was Gracie and Scarlett's panic when they thought I was going home every time Vivian made an appearance!!

During one of our 'world to rights' chats over coffee with My SIL, I also decided that I was in fact harvesting my new boob on my tummy and that I should not be too hard on my self for the Tummy weight!!…that being said I'm looking at returning to my original booby size,when I have my reconstruction and not GG cup, so shedding a few pounds is definitely the plan!

I never did swim in Spain, but I was grateful of my tankini purchase in France.  There are special prosthesis for swimming, however given the cost of these (at least £85) and the fact that I will not need one for long, I wore the spongy prosthesis, I was given when I had the implant taken out. I have been fitted with a 'permanent prosthesis' for everyday and so the spongy one is a spare and it worked well in the water. 

Being surrounded by my nieces, brother and SIL during this vulnerable moment, made me  realise that the reactions of those around me influences how I feel about myself more than I realised. You know what the message there is!!

My summer hols certainly did bring about some lovely memories and some post treatment learning experiences for me. I left France and my little 'niece filled' Utopia feeling content and a little more prepared ready for the months of change a head!

'Navidad de Verano'

I've rather neglected my blog in recent weeks and I attribute this to some rather excellent memory making and living in the moment distractions! 

This Summer has seen me learn a lot about living with the effects of treatment, and I will blog about this separately and reserve this post for reminiscing on my recent trip to Spain.

Cake made by Tina - Matina Cookies

My trip to Spain this July will be fondly known as my 'Navidad de verano', my 'Christmas  in summer time' ....aptly named for the warm welcome when I arrived at My Aunty Margaret and Uncle George's house in Tarragona and then a 'progress' of family catch ups and times that perhaps are ' usually' reserved for the festive period.

Felipe, Jordi,Montse,Ana, Carolina i Yo!

The house in Tarragona had been my home for over a year when I was 15 following the death of my parents.... It was a pretty tough time after my mother died, but I have so many wonderful memories of my time in Spain that year and going back felt  special and it satisfied the nostalgic tendencies that cancer seems to have manifested within me.

On arriving,  I saw that the table had been beautifully adorned, in 'my honour' for a family meal, with starched table linen, set with the Wedgwood dinner service, silver cutlery and crystal glasses. The only things missing were the Christmas crackers!!!

My 'Spanish' family run English Summer SA Language Camps in Spain; , and my visit was in the midst of their busiest time, so I was not expecting all of my cousins and their partners to 'down tools' and welcome me in such a way.  I'm pleased that in some way, my visit was responsible for a rare family Fleix-Wright get together in Summer time!! In fact it was my cousin Felipe that declared the event as 'Navidad de verano' ! As the special guest , I also had pride of place next to my uncle George! 

This pretty much set the scene for the entire week long trip, and I was equally spoilt with time by the Jacas - Osborn branch of my family. My cousin Elizabeth and I spent a lot of time together that week and with that I learned that 'talking a lot' was a family trait!! Lluis, her husband as welcoming as always, was intent on feeding me up!!

Ana, Tina, Elizabath and Lluis- Family Jacas

I also met Ana and Tina's children for the first time and how lovely it was to see the cousins that I had once 'baby sat', happy with their own children. Just one more '3rd cousin' to meet now Vikki ... Let's make that happen soon xx

Elizabeth and I visited Vallclara, a small village in the mountains where I spent a lot of time as a youngster and is one of my most favourite places in the whole world.

My parents are both buried there in a small spanish cemetery, at the top of the valley looking down on the village itself. It comforts me knowing that they are at peace in such a special place alongside Nanna Wright and Elizabeth and Lluis's son, Daniel, who died from cancer age 6. 

Unexpected encounter with an old friend Bruno!!!

The last time I visited  Spain was 3 years ago for my Aunty and Uncle's 50th Wedding Anniversary, well before my diagnosis and so was very much over due a visit. 

Uncle George has been living with cancer for over 10 years and our 'common ground' enabled us to relate and exchange 'grotty' chemo stories . He has been having chemo treatments since he was diagnosed and I'm proud to say, like most of 'us' that have not had a choice but to live with illnesses,  Uncle George  has not let the effects of the treatment, limit him more than it needs to!

Uncle George was not well during my visit and not even Aunty Margaret's exasperated concern for his solo 'outing', to 'Prades' one day, stopped him from 'taking to the road in his car' and enjoy the 'release' that driving gives him!

In this story, inspiration also exists in the unconditional commitment shown by Aunty Margaret to her husbands care and well being. I experienced this exemplary care first hand during my stay and I have been missing my daily dose of freshly squeezed orange juice each morning since my return home.

The effects of treatment on 'carers' generally and their needs  are overlooked and impact on their lives are underestimated. Whilst most carers don't to seek gratitude, their endeavours are worthy of a massive shout out! (Macmillan carers blog) 

It is any wonder with people like this in my life that I have embraced my cancer challenge in the way that I have.

Aunty Margaret and Uncle George