Friday 26 April 2013

Making a Difference


As I put the keys in the ignition, I was already fighting back the tears. There were six ladies at the research Focus Group. Five cancer patients and one carer. Three ladies including myself affected by breast cancer, one by lymphoma and one by bowel cancer. Three ladies had a terminal diagnosis including the two other breast cancer patients. I considered myself very very lucky. However, as personal stories unfolded, I realised it was a very fine line between me getting the diagnosis or being sent away home, having been more or less told that there was “nothing wrong”. It was down to the nurse at the ultra sound session asking the operator if I needed a needle aspiration, he had said no, not if there’s not a lump. I was ready to walk out at this point as I was clearly wasting everyone’s time. She asked could I feel a lump, I said yes, that was why I was here. She organised the needle aspiration that saved my life.

Sadly I listened to other similar stories, Claire (not her actual name but for confidentiality reasons) had been back and forth to her doctor for three years feeling unwell, then aged 37. At 40 she was diagnosed with advanced breast cancer that cannot be cured. She had, three years earlier, been told by her GP to go home, lose some weight and do some exercise, then she might feel better. Irene went to her GP after her leg swelled up on holiday. She was given water tablets for several months. She was eventually diagnosed with lymphoma. However, as the stories unfoldedH
Janet was recalled following a bowel screening. A polyp was found and she underwent surgery, only to wake up to find she had been cut the length of her abdomen to remove a stage 4 mass from her bowel.

The thing is, cancer is a silent killer. You cannot see it. It’s not like a broken arm. We were six gorgeous ladies sat round the table at the forum, chatting, laughing and shedding a tear or two, but looking by all accounts “normal” and even fabulous, yet three of us would not live for more than what, three years?

The two researchers were keen to hear all about our experiences with the health services, good and bad. This information will be used to educate future professionals with the hope of providing an efficient and better care service. We will be given the findings once all the forums have taken place. From our own group there was clearly plenty of mal practice and lack of care. There had been two official complaints put in about a GP and a consultant. Indeed, I should have reported my own breast care nurse who was largely incompetent in several areas and who I now have no desire to deal with.

The forum wasn’t all bad, although many of the care stories were. As someone said, the treatment we had all received must have been alright as were all still alive! I think some of that was more to luck than judgement though and some of us were more alive than others!

We shared stories of immense shows of support from family and friends, almost an entire family shaving their heads when Debbie started chemo! Nothing but praise for the anonymous Macmillan nurses on the end of a phone who offered valuable help and support to us and our families.

What the forum did for me, apart from drag me down emotionally for a few hours, was it made me realise more than ever, that I have to be in charge of my own life and my own care. With my hospital appointment coming up on Tuesday it is up to me to get my concerns across and to make myself understood and believed. I have had to wait for months for this appointment since first going to my GP. It’s unacceptable. It’s only down to the Macmillan telephone support that I am going at all.

The forum gave us all the chance to have a voice and to make a difference for those in future generations who find themselves swept into the health and care service as we have. For them, for Alice and Maisie, we hope that the NHS will provide a system of care, comfort and quality treatment delivered by professionals who will have the skills, knowledge and the time to care.

Friday 12 April 2013

The Scar Project Video Clip

This is a brilliant video clip about The Scar Project. It contains graphic images of beautiful women.

 I am a huge fan of The Scar Project. I have some ideas about trying to create something similar but with paintings, rather than photographs. I'm putting the feelers out to see if I can get any interest from artists who would like to paint for the project or for ladies who are prepared to model. How amazing it would be to get a small exhibition off the ground! Watch this space!

Thursday 11 April 2013

Spring is in the air!

Despite another sprinkle of snow this morning, I am sure that Spring is in the air! I was delighted yesterday to purchase a fantastic T shirt for the sunnier warmer days that are ahead! I’m developing a good eye for folds and gathers in the right places on garments that might cleverly disguise my mastectomy without the need of always wearing a scarf. I’m very pleased with the jazzy print, ruched top which does not require a prosthesis or scarf! I’m on the look out for some more t shirts to add to my wardrobe! Also on order is a bikini, I had resigned myself to the fact that I would be wearing a one piece going forward and even that has proved tricky choosing not to wear a prosthesis. Most swimwear is padded or shaped, not suitable for my new shape. However, River island have a lovely bikini in stock which has a simple top with folds of fabric over the bust evening out the imbalance. Ideal for a splash in the South African swimming pools that I will be heading for before very long!

It was great to get in the gym again this week, I’m swimming regularly, a couple of times a week but I haven’t had the energy for much more than that recently. I was very happy to manage 20 mins on the running machine, 5 walking and 15 running, albeit at a somewhat slower pace that I was used to this time last year! I endeavour to continue with that!

 It was suggested to me that I buy a home blood pressure kit as some of my symptoms could be due to low blood pressure. Having tested myself every morning over the past 5 days an interesting pattern is emerging, of steadily rising blood pressure together with steadily rising energy levels! At its lowest, I was reading 97/70 increasing to 118 / 72 today. All within “normal” ranges but clearly some fluctuations. I had good energy levels on waking this morning, but was feeling rather tired the day of the low reading. I shall keep a record to take along to clinic at the end of the month.

I enjoyed another session of reflexology at CLAN this morning, an hour on the couch relaxing with a foot massage and gentle music! I was also invited to take part in some research to help shape the training of professionals who will be involved in future cancer care and service provision across the North East of Scotland. This is a joint project lead by Robert Gordon University and the University of Aberdeen in collaboration with CLAN Cancer Support. I shall be attending a focus group to share my cancer journey and to voice my experiences on how the professionals worked with me during the journey. It will be interesting to hear the experiences of others in the group, perhaps it will help restore some of my faith in the NHS!


 

Saturday 6 April 2013

An evening of Burlesque!


It’s always a good idea to buy presents for other people that you can also share in! An evening of Burlesque at the Music hall last night was a real treat! My prosthesis remained in the cupboard at home but my “softee” came out to wear under my black sequined cocktail dress, no disguising with cardigans or scarves. Online booking said “dress to impress!” Heels, stockings and little black dress, perfect!

The evening unfolded into a fabulous cabaret show time with gorgeous girls, feathers, flames, tassels, sparkles, hoops, tricks and much more! The hostess with the mostess had us all laughing, relaxing, cheering and generally making lots of noise!
I found myself caught out and pulled up sharpe during the first strip tease, being faced with beautiful breasts, curves in all the right places, aware that I will never look like that again, aware that the chances are, at least one of these beautiful girls will end up with breast cancer during her lifetime. A few moments of fighting back the tears that had welled up in my eyes (not wanting any mascara streaks down my face!) I got to thinking I should embrace all that I am and maybe I should find a Burlesque dance class and show that I am very much still all woman, Amazon Warrior that I am!  After all, it has to be easier to swing one tassel than two!

Tuesday 2 April 2013

Good Friday


A week went by with not another word from my breast cancer nurse. I wasn’t surprised but I was left feeling let down by the system once more. My cancer nurse was of little or no support during treatment, unable to get my MRI scan organised and telling me my tumour was tiny just a couple of millimetres which I knew not to be the case as I could feel it. It was 2cm. She also sat on my bed ten minutes before I went down for surgery and asked if I would be going home that evening, I was rather shocked, she said lots of women go home after lumpectomy. I pointed out I was having a mastectomy.

 As a result, I never had much faith in her since! What I did receive yesterday was a letter in the post from NHS Grampian advising me that my annual check-up appointment had to be altered, and they sent their apologies. My appointment is now on 30th April, not the end of September. I had assumed that trying to sort out the present issues was extra to the annual check-up and not instead of! So anyhow, I have four weeks to wait before I go back to clinic to try to get sorted with my present issues. It shouldn’t be stressful or a battle getting someone to take you seriously,yet it always is.

I was overjoyed this morning to hear about the new recovery package being rolled out by the government via Macmillan for cancer patients coming to the end of their treatment. I remember the feeling when I was given my pathology results just two weeks after my mastectomy, relieved that I was node negative and no chemo needed but rather shocked and panicked to be told “ Take Tamoxifen for five years and we will see you in 12 months.” Off I went. Sent home to deal with what had just happened, to cope with the loss of my breast, the effects of it all on my husband and children and to let the scars mental and physical heal on their own. With dissolvable stitches I didn’t even need to see anyone to get those removed!

After a few weeks friends have got over their initial shock and offers of help diminish and things for everyone else return to normal. For the cancer patient, things never return to “normal”. We face a sudden realisation of what has happened to you during the whirlwind of the previous weeks and months, worries that the cancer could return and if it does how do you know, at what point do you see the doctor? Concerns about the drugs, is this normal? With no scans other than a breast scan, the mind is left wondering, how do they know the cancer isn’t anywhere else? I was sent home to get on with it with no support or advice what so ever. Given there is no support for the patient, there is clearly none for the husband or children who are naturally affected by their own concerns and fears.

I have seen my GP twice since my surgery and I still feel I am wasting his time and that he doesn’t really understand. His lack of concern regarding a possible genetic link, my daughters now have three generations, four direct blood relatives, affected by cancer, on one side of the family. My doctor said as it was not on my mother’s side it was nothing to be concerned about. The Macmillan genetics book contradicts all that my GP has said. He was also not in any way concerned about the menstrual flooding, despite the Tamoxifen patient leaflet clearly stating you should see your GP immediately with any abnormal bleeding. I had to ask for a blood test to check my iron count which came back anaemic. My blood pressure has never been taken since I left hospital although it was low for a few days after surgery. I have not been told I need any follow up when the iron tablets finish after two months nor to check how the bleeding is.

At that point I turned to the Macmillan on line and phone service. Caring, understanding people who are trained, experienced and brilliant! I was able to speak directly to a nurse who assured me that my concerns about the bleeding and fatigue were justified and that I needed to see my consultant. I wish I had called them before.