Thursday, 24 April 2014

BA ZI GA bazinger (Sheldon Cooper)

I want to shout it out ......


I have returned from the hospital and completed 6 cycles of FEC chemotherapy and didn't even come close to wetting myself today!(read the end of the previous post).This is because I thought I was having an internal scan today and not an external one, so I'm a complete numpty and got my wires crossed. I could have saved the anxiety and slept well last night.

I attended radiotherapy at 9am and then returned back to the hospital at 13:30 - its been a long day and I'm pooped. BUT I'VE FINISHED.

I managed the first 4 cycles at 100% dose (I swear I don't know how)and then #5 and #6 on a 75% reduced dose.

Did you know there are 50 different types of chemotherapy drugs?

It has been the longest 6 months EVER, starting with the diagnosis on the last day of September 2013, fertility treatment in November 2013 and 5 months from December to date attending the Lingen Davies Centre for a cocktail of nastiness. The 9 days in hospital with bilateral pneumonia exacerbated the process and has prolonged and delayed treatment by 4 weeks. 

When I was in hospital and moved onto the respiratory ward, I met a 45 year old woman who had been to her doctors for 18 months complaining of problems with her chest/lungs. The day before I became her next door neighbour and partner in crime, she was diagnosed with terminal lung cancer. We talked and the only advice I gave her was to "kick its butt and never give up, stay positive, because as soon as you mentally give up, your body will too". She was making a bucket list and looking to go abroad, which she had only done once before on the tobacco run in the back of a van (this made me laugh).I was really looking forward to catching up with her at the Severn Hospice. Sadly she didn't manage to travel abroad.There is always someone worse off than yourself:( 

Which brings me to Stephen Sutton. I am getting choked up @emotional wreck. There aren't anymore words that haven't been written Stephen. You are an inspiration.

I forgot this when I went onto the ward, my memory  is crap. 

The 15th of May 2014 marks the end of the last cycle and I told my employer that I'd be back to work on the 19th of May (a little over ambitious). After a referral to Occupational Health I was advised to consider going back end of June/July. I was told that most people in my situation she had seen have had at least a year off work and she said that they had not got through as much as I had. She said that I shouldn't push myself and that radiotherapy can be both mentally and physically exhausting. In fairness most people do say radiotherapy is exhausting and again this could be because of the accumulation of chemotherapy drugs and being zapped daily. The other issue is driving longer distances as my seatbelt will cut straight across the targeted area which will already be sore.

I certainly won't miss peeing red or being so constipated I've been seriously close to passing out.

I can start living my life outside of `chemo' cycles and be able to go out without checking dates and the calender. I can return the yellow sharps box back to the hospital.I no longer need to keep Filgrastim in the fridge (after this week) or expect my husband to inject me take steroids which make you feel Urgh. 

I hope that someday I will no longer feel sick when associating certain foods with chemotherapy. I hope to be able to drink tea again or eat casserole without gagging.

I look forward to not having my bloods taken or having a cannula fitted. I have developed an unhealthy fear of having a cannula inserted. I have to continue to remember never to have injections or bloods from my right arm or a tattoo due to the increase of lymphodema. And avoid any scratches, burns or cuts to my right arm/hand.

I have to accept that the chemotherapy may/will/more than likely force my body into an early menopause and that maybe the hot flushes are not down to the steroids. I'd like to think it won't happen at 39 BUT my breast cancer nurse said it would happen and she also said I would lose my hair (so who am I to argue?). I'm armed and ready and bought a kitsch hand held fan.

scroll down and keep reading

I am a Chemo Ninja.

So goodbye Mr Chemo, no christmas card for you this year and hello Mr Rads.

My oncologist told me that I am having daily general radiotherapy around the right breast area for 3 weeks (Monday to Friday) and then a further 1.5 daily targeted treatment to the scar line (this is called a booster). I start on the 19th of May (exactly three weeks after my last cycle as planned). I've been given my schedule but only shows a months worth of dates, so I need to get some clarification to whether its actually 4 weeks or 4 and half.

So at 9am this morning I discussed the next steps in the process and skin care. I was advised to wear loose clothing, something that's easy to take off, no deodorant and use aqueous cream. I explained that my mum had given me an aloe vera plant, so I would also be using it due to its natural soothing content. The girl looked puzzled and rushed off to speak to the radiologist because she wasn't sure if I could use it. She came back and said "can you bring it in with you". I replied "It's a plant, you want me to bring a plant in?".

Even more confused she went in search of the radiologist one more time and returned, saying that people in Australia are given individual aloe vera plants as part of their treatment.

I was measured up for the radiotherapy beam and had to contort my body into a strange position in the CT scanner, with my arms in raised handles. I haven't read Fifty Shades of Grey, but I can but imagine, this being from a S&M scene, which of course I shared with the girls sorting me out! I am now a proud owner of two small black NHS tattooed dots,so that the beam can hit the target area every time without any deviation.

Onwards and Upwards 

Love Tam x 


You may have wondered why some people are hooked up to infusion machines all day at the chemotherapy day centre and others have their chemo drugs syringed into the cannula. This is because people are having a reduced dosage of chemotherapy drugs which are infused with saline and are drip fed through over a period of hours/day. The treatment recommended for breast cancer is more aggressive and not diluted so it is directly administered by the nurse.

I have spoken with my Breast Cancer Nurse this morning (BCN). She's advised me that she was not happy about the timeline I'd proposed to return to work and she would write a letter to support this. BLAH blah blah .... She also said that I may need to rethink booking a holiday after treatment as she said I really won't have the energy to do much (so Crete, Kefalonia, Sardinia or Portugal are on the back burner for a while, thinking more long weekend in wales, possibly with our new dog by then).

She said people are emotionally screwed when treatment comes to an end and have time to think about what they've been through and worry about it coming back. I want to return to work and unfortunately money does not grow on trees. I feel the chat with Occupational Health and the proposed implementation of the phased return to work on reduced hours is ideal and sensible and do able. I can't let cancer rule my life anymore, it's taken up a lot of my time. It sucks, it's shit, address it and move on. I may have a blip further done the line, whether it be recurrence of the little shit, or that my head may explode. I'll deal with it. As I said onwards and upwards. In the last couple of weeks I've even relaxed about hoovering/cleaning and my husband is right there are more important things in life than having an OCD wife who likes the property to be clean.

After all I am here x

If it had not been for early detection, particularly on an aggressive grade 3 cancer it may have been a completely story.

So go on your buggers, go and check your wobbly bits, it may save your life 


Tuesday, 22 April 2014

Look Good Feel Better

I have the most fabtabulous make up goody bag from my afternoon workshop at The Hamar Centre and I am a very proud owner of a Chanel lipgloss!

The Look Good Feel Better workshop lasts for 2 hours and you follow a trained Macmillan beautician in the art of applying make up with 9 other women all affected by cancer and hair loss. Some with eyelashes, eyebrows and hair and some without. An assortment of women in hats and wigs. I am wearing my cotton jersey hat again because .......

My goody bag: Nivea, Chanel, No 7, Clinique, Estee Lauder, Max Factor

My head this week has been really aching and as I know when I initially lost my hair, it is from the chemotherapy drugs affecting the hair follicles. The hairs are lifting out of my scalp and so some hairs appear quite long, when in fact they are on there way out! I've also lost the end of my eyebrows again. BUT I am happy in that I know how fast my hair grows.

Because I had a delayed cycle and 4 weeks behind schedule, my body has been tricked into thinking my treatment has finished - so my 6th cycle is almost like my second cycle and it was between cycle 1 and cycle 2 that I had a very sore and hot head and suffered the main hair loss.

I would highly recommend the LGFB workshop and to secure a place asap. I booked 2 weeks before Christmas! They also have a cancellation list. I had been contacted twice previously due to people cancelling, but first time was on the wrong week (where I need to avoid people and germs)and the second time I was an inpatient in hospital :(
However it was worth the wait :)

Benefit Perfume (Excited MUCH)

I have used cleanser, toner, moisturiser, blemish cream, colour corrector, eyeshadow, eyeliner and lipgloss.

Here is my selfie.

Had a phone call this morning from the Lingen Davies Centre. I have been called in for a CT scan, where drugs are flushed through a cannular that makes you feel like you've wet yourself (I double check everytime)and a NHS tattoo booked for 9am on Thursday. Someone said the tattoo looks like a blackhead!

Tuesday, 8 April 2014

Wig brands to consider

When you need to purchase a wig don't fall into the trap of buying online from a shop which may be using stock photographs. Make sure the wig has a brand and name listed. 
Some on line retailers offer human hair wigs for peanuts, if it seems too good to be true, don't spend your money. Human hair wigs are usually bought and sold at a premium. I originally bought my Rene of Paris from ebay and had extensively researched Monofilament wigs and costed them online.

Rene of Paris

Amore collection
Jon Renau
Rachel Welch

Forever Young (Budget synthetic hair)


2014 Articles on Triple Negative Breast Cancer

People are often surprised to learn that breast cancer isn’t a single disease, but made up of several sub-types. Individual cancer cells contain surface proteins that respond to signals within the body to cause cancer to grow.Some cancer grows in response to the hormones estrogen or progesterone. They’re called ER/PR+ cancers. Other cancers grow in response to a protein called HER2/neu, and are called HER2+ cancer. One of these subtypes is called triple negative breast cancer (TNBC).

About 10-20% of breast cancers test negative for both hormone receptors and HER2 in the lab, which means they are triple-negative. Since hormones are not supporting its growth, the cancer is unlikely to respond to hormonal therapies, including tamoxifen, Arimidex (chemical name: anastrozole), Aromasin (chemical name: exemestane), Femara (chemical name: letrozole), and Faslodex (chemical name: fulvestrant). Triple-negative breast cancer also is unlikely to respond to medications that target HER2, such as Herceptin (chemical name: trastuzumab) or Tykerb (chemical name: lapatinib).
In addition, triple-negative breast cancer:
  • Tends to be more aggressive than other types of breast cancer. Studies have shown that triple-negative breast cancer is more likely to spread beyond the breast and more likely to recur (come back) after treatment. These risks appear to be greatest in the first few years after treatment. For example, a study of more than 1,600 women in Canada published in 2007 found that women with triple-negative breast cancer were at higher risk of having the cancer recur outside the breast — but only for the first 3 years. Other studies have reached similar conclusions. As years go by, the risks of the triple-negative breast cancer recurring become similar to those risk levels for other types of breast cancer. 

    Five-year survival rates also tend to be lower for triple-negative breast cancer. A 2007 study of more than 50,000 women with all stages of breast cancer found that 77% of women with triple-negative breast cancer survived at least 5 years, versus 93% of women with other types of breast cancer. Another study of more than 1,600 women published in 2007 found that women with triple-negative breast cancer had a higher risk of death within 5 years of diagnosis, but not after that time period. The recurrence and survival figures in these and other studies are averages for all women with triple-negative breast cancer. Factors such as the grade and stage of the breast cancer will influence an individual woman’s prognosis.
  • Tends to be higher grade than other types of breast cancer. The higher the grade, the less the cancer cells resemble normal, healthy breast cells in their appearance and growth patterns. On a scale of 1 to 3, triple-negative breast cancer often is grade 3. 
  • Triple Negative Breast Cancer grows rapidly, often has a higher grade and tends to metastasize (spread). Because the cancer grows quickly, its often discovered by the patient between mammograms. 
  • The fast growth rate means that the standard chemotherapies have a good chance of inducing remission. Triple Negative has a much better response to conventional chemotherapy than other breast cancer subtypes.
  • Recurrence, sometimes called relapse, is the return of breast cancer. Breast cancer can recur locally in breast or scar tissue, or distantly in other parts of the body including bones or organs. Cancer that occurs distantly is considered metastatic cancer and is very difficult to arrest, although it’s not untreatable. 
  • TNBC cases that recur more frequently affect soft tissues and organs such as the lung and brain, rather than bones. It’s important to remember that most people with TNBC don’t have a metastatic recurrence.
  • Usually is a cell type called “basal-like.” “Basal-like” means that the cells resemble the basal cells that line the breast ducts. This is a new subtype of breast cancer that researchers have identified using gene analysis technology. Like other types of breast cancer, basal-like cancers can be linked to family history, or they can happen without any apparent family link. Basal-like cancers tend to be more aggressive, higher grade cancers — just like triple-negative breast cancers. It’s believed that most triple-negative breast cancers are of the basal-like cell type.
It can feel upsetting and even scary to find out that you have a form of breast cancer that (1) is often more aggressive than other types and (2) isn’t a good candidate for treatments such as hormonal therapy and Herceptin. But triple-negative breast cancer can be treated with chemotherapy and radiation therapy, and new treatments — such as PARP inhibitors — are showing promise. Researchers are paying a great deal of attention to triple-negative breast cancer and working to find new and better ways to treat it. “This is an exceptionally hot area of research in the breast cancer field,” says George Sledge, M.D., medical oncologist and Professional Advisory Board member. “There is immense interest among drug developers, pharmaceutical companies, and breast cancer laboratory researchers in finding targeted therapies for these patients.”

Hidden Benefit

The risk of recurrence for TNBC is greatest within the first three years and declines rapidly after five years. Therefore, there are no long post-therapy regimens. That suggests a hidden benefit: a shortened treatment course. Women with early-stage, slow-growing ER+ cancers are often in treatment for 10 years or more.