Sunday, 30 October 2011

The Real ism's of Cancer Land


Currently I sit and wonder if I am accepting or in denial. Am I putting up an elaborate front to hide my real anger to the ism's of cancer? My replies have become so methodical without emotion; it’s as if I thrive on keeping my true anger at bay. I am playing a game of knackering myself out so I forget, but I am unsure of which bit.  Like I said to a friend, ‘I once was an empty cup with zero info to becoming a cup that overflows with attitude to boot.’ The individual I once was, who would shy away from the camera now could not give a toss. I am, who I am, but what do I honestly want to achieve.

My hospital is trying to make the breast care unit more BC patient friendly. It was during the mastectomy wear modelling slot I did for my hospital on Friday that all this became apparent. The unit is looking a little worn and torn, so they are looking at ways of raising the cash to improve this problem. Again I have noted the pressure is being applied on BC patients to make people more aware. The two areas the hospital wants to improve on in the breast care unit are waiting and comfort. These two areas were brought to the attention of the hospital via a questionnaire sent out to patients.

1.    The BC patients would like a bleeper system so BC patients do not have to remain in the breast care clinic. It would give patients the freedom to sit in a cafe on the hospital grounds or just simply stretch their legs. The bleepers which will be handed out at the reception area are such a brilliant idea. I already know this idea is being used in several hospitals in various departments, so it is viable.

2.    The chairs on the unit need replacing, and the decor on the unit needs revamping.

3.    Refreshments are another area BC patients say need addressing, but the bleeper system would illuminate this problem.  

I do have a few ideas that could be used to raise cash, but it is whether these ideas are practical for their purpose.

When speaking to the breast care team at the hospital I noted it is very much in its infancy. They want to do everything through the patients and their interaction with them in hope they have a networking system, but it could end up with the same glitches that other organisations face in this current climate. I tried to explain that if they want to make an impact on what they are trying to achieve they need to climb out of the BC box. It seems much focused on breast cancer patients being pro active to achieve the monies to be raised, and sometimes those people just want to forget the journey they are on or are financially already over stretched.

I have been told time and time again as a BC patient to move forward, but the reliance of a patients feedback or interaction means that sentence is nil and void. This is only my observation on the whole journey of being a BC patient, that some sentences that are used actually should be dropped or rewritten into something more realistic to the journey of BC. It is not realistic to say move on, not when your living through the trauma of breast cancer twenty four plus.

I took my youngest daughter to an art class for families on Saturday. This was nice because normally these events are strictly set out as non children friendly. It gives Sophia a chance to interact with people I know and I can sit back. Sophia was the only child present and the organiser said she could invite her friends along if she wanted next time, but truth be known I would not even attempt to ask anyone. Who would actually want me to take their child into a place that focuses on cancer especially when it does not affect them?

I explained I’d sooner keep this side of mine and Sophia’s life separate. Without getting into the truth of the real reasons why. It is bad enough that my friends drop to the wayside without having parents of your child’s friends encouraging the same behaviour. Like I said it is unrealistic to say move on in BC land.

Sophia did a lovely painting that will be on display in the Big C hospital along with pieces I have done. She walked away from the project excited because next month there is a different project that she can become involved in as well.

Slowly I and my daughter are filling our diary with various activities that can be shared experiences. On Monday there is the ‘In Time’ Premiere with Justin Timberlake possibly attending. It will mean a mad rush to catch the tube to Central London, but she likes the excitement of getting there. And she is a Justin Timberlake fan, so I will be filming her reaction.



Update

Dilemma is not the word, forgotten more like. In the two words 'move on' really is 'switch off' because of the irritation you feel or anger to the situation. If BC patients are not careful you can become a puppet to a machine of raising awareness and cash in various areas which can flow into pockets rather than the aim set out. At the modelling event they had an MP who was handed a plaque. To me you might as well throw the plaque on the flames of invisibility because it will be down to the patients to achieve.  Mean time the MP will be there to swallow any attention the new centre could achieve to make sure his job is secure. I have seen it time and time again the sympathy vote which no BC patient wants for political gain.

The real ism' is acceptance, Acceptance towards the visual change, but also the mental attitude you develop which was not there before which could go either way. I saw one of the other models who were convinced to do the modelling when really she was not ready. It was to bring a mix into the cultural pot of BC land. She was Asian and was not ready to do such an event. Yet she had been pressurised into feeling it was the right thing to do. Now she could of easily walk away and decided no it was not for her, but the realisation of what she was about to undertake only hit home when she was in the room. I told her do not do the underwear piece if you are not comfortable. The gowns that we were to wear were post op surgical white gowns. They were not flattering just a reminder of what we had done. If I had organised the event I would have gone to Primark and they sell lingerie gowns at £6.99 and I would have bought five.  The make-up company used were selling their products at this small event as well as preparing our faces. Question why could they not have prepare sampler bags for the models? There were things I picked up throughout which could have improved a BC patient’s experience. I know I could get involved and improve what they had set out, so the next event is more focused on what is in front rather than flash backs of the past. Yes we laughed about the unflattering gowns, but to me that should not have even been there.

6 comments:

  1. I think you've hit on a real dilemma here, Sarah. We want to do what we can to improve things for other women who find themselves here, but does that activity make it difficult for us to move forward ourselves? For myself, I was glad when one of the studies I was in finished, because that was certainly a hinderance, but being part of a patient advocacy group is okay for me.

    There is a limit to how far forward one can move while you are still in active follow up anyway.

    Eliza xx

    ReplyDelete
  2. Thanx Eliza for your comment.. I thought I'd extend my post further because of this.

    There really is a limit, but as one patient loses faith in the system there is a fresh face to BC land that can replace...

    Sarah M XX

    ReplyDelete
  3. One thing that strikes me is that ALL cancer patients need care and concern and patient-friendly surroundings, not just breast cancer patients. And how can anyone encourage us to move on when we all have to be vigilant forever? Oy...

    It makes you really wonder about where the healthcare system is at when it doesn't really get that survivorship concerns are lifelong, that they most definitely include financial concerns, concerns about being able to work for a living, keep a roof over one's head, deal with a circle of friends that too often shrinks, deal with the upheaval of families, the toll it takes on children with parents who have cancer, etc., etc. All we can do is to try to keep educating the caregivers in healthcare.

    Hugs, Sarah.

    ReplyDelete
  4. The clinic is focused on Cancer as a whole, but BC is the one they are using to raise the cash. The politics of how to raise cash the best way etc is involved. And yes you are right Kathi that really these areas should have been resolved as an on going concern, but what would we know we are just the conveyor belt of numbers nothing more.

    Sending hugs your way Kathi xxx

    ReplyDelete
  5. great post Sarah, I too struggle with the moving forward, and realising I will never be the same again. Sometimes I find it easy to be angry, at KFC flogging 'pink' buckets of deep fried cack they call food, and cosmetic companies peddling make up loaded with carcinogenic ingredients. Too many vested interests with big pharma, I think the truth is buried too deep. Simplest thing for me, is just to try and help one woman at a time realise that BC is not the end of your story, nor does it need to define you xx

    ReplyDelete
  6. Hi Gabby,

    It is not that I am having trouble moving forward. It is just the words that you are told when really because of the appointments etc you actually can not move forward. the 'Oh Sarah do you think you could help with this.' (Which is focused on cancer and raising awareness)this I do not mind, but again means you still remain in that bubble of cancer land. Like I said in my post when setting up events they should look out of the Big C Box.... I know I am a strong individual and my constant questioning could come across wrong on my blog, but on this particular subject I know plenty women feel the same way.

    Why say move on? When really you don't not unless you put blinkers on.... and then you are told you are not facing up to the ism's of cancer

    ReplyDelete