It seems such a long time since I posted.
I'm still here Mutha F******
My cancerversary on the 30th of September was celebrated by a quiet evening down the pub.
I had my annual mammogram in October and was given NED (No evidence of disease)
I'm back at work (I started 30th of June) with a phased return to work and dropped my hours from 37 to 30 hours per week.
I have some side effects ......
I have pain in my left hip, I've had a clear bone scan and a clear x-ray and awaiting futher investigations! I'm currently on anti-inflammatory tablets, calci chews and painkillers.
Nothing I can't deal with BUT just something you learn to deal with. I'm no longer experiencing fatigue and just getting on with life.
I'm still on the hot sweats though :(
I have hair that I'm sure some old dear would happily pay for. It's the perm and set - cant do **** all with look
Keep going. YOU CAN DO THIS xxxx
Monday, 16 June 2014
HOW TO TIE A SCARF
HOW TO TIE A SCARF
People in the first few weeks of my diagnosis came at me with positive advice and stories of their auntie, grandmother, family member - twice removed and how they hadn't lost their hair or they continued to work. Although I know this was all well meant, using reinforced positivity to a shit situation. I think the advice should be - unless you've had a diagnosis - keep your advice to yourself. Cancer care is a complete mind field and up until last October I thought "one size fits all" which could not be further from the truth. Each treatment plan is completely individual depending on:
- Size of tumour stage and sizing
- Type of cancer
One major way of defining your type of breast cancer is whether or not it is:
- Endocrine receptor (estrogen or progesterone receptor) positive
- HER2 positive
- Triple negative, not positive to receptors for estrogen, progesterone, or HER2
- Triple positive, positive for estrogen receptors, progesterone receptors and HER2
These classifications provide doctors with valuable information about how the tumour acts and what kind of treatments may work best.
Hormone Receptor-Positive Breast Cancer
About 75% of all breast cancers are “ER positive.” They grow in response to the hormone oestrogen. About 65% of these are also “PR positive.” They grow in response to another hormone, progesterone.
If your breast cancer’s cells have a significant number of receptors for either oestrogen or progesterone, your cancer is considered hormone-receptor positive and likely to respond to endocrine therapies.
Breast cancer tumours that are ER/PR-positive are 60% likely to respond to endocrine therapy/hormone therapy. Tumours that are ER/PR negative are only 5% to 10% likely to respond to endocrine/hormone therapy.
Endocrine therapies for breast cancer are treatments usually taken after surgery, chemotherapy, and/or radiation are finished. They are designed to help prevent recurrence of the disease by blocking the effects of oestrogen. They do this in one of several ways.
· The drug tamoxifen, taken by some women for up to five years after initial treatment for breast cancer, helps prevent recurrence by blocking the oestrogen receptors on breast cancer cells and preventing oestrogen from binding to them.
HER2-Positive Breast Cancer
In about 20% to 25% of breast cancers, the cancer cells make too much of a protein known as HER2/neu. These breast cancers tend to be much more aggressive and fast-growing.
For women with HER2-positive breast cancers, the drug Herceptin has been shown to dramatically reduce the risk of recurrence. It has now become standard treatment to give Herceptin along with adjuvant (after-surgery) chemotherapy in those with metastatic breast cancer.
Has it spread to your lymph nodes?
Lumpectomy or Mastectomy? Reconstruction?
Will this affect your ability to have children naturally? My Breast Cancer Nurse said that mother nature would "do one" during treatment and would not return. As she also said I would lose my hair, I think its fair to say I have to sit up and listen.
I received lots of advice from people who had not had cancer but again knew of a friend of a friend who had tried fairy dust to rhino farts to treat cancer, all worked of course.
The advice that positive thoughts will stop the hair loss clearly worked!
I was told that chemotherapy kills people and that I should try coffee enemas instead or cannabis oil THC, kill enzymes and become a vegan.
I've incorporated superfoods into my diet, but like any fruit and veg, surplus to requirements it's heading out of your system.
I changed my diet, cutting down to one coffee a day, juicing and cutting out cheese or at least attempting to make up 20% only of my diet. However during each cycle when I couldn't taste diddly squat I had loaded mature cheddar on everything. My breast cancer nurse said at diagnosis (dx) that I could have been the healthiest person alive and still be sitting in front of her being given the news "you have breast cancer". This is because cancer does not discriminate.
I lost 3lbs and kept off during treatment. I did drop half a stone whilst in hospital, as I couldn't eat the first four days and after that point the food was just so vile. Since having Charlie DOG I have lost half a stone through exercise. It is better to maintain weight during treatment or lose weight through healthy eating than plan to lose a lot of weight. You are having steroids pumped through your body so be kind to yourself if you gain a stone or two.
The things people say
People: You won't lose your hair
BCN (Breast Cancer Nurse): You will lose your hair
|Reality: NO hair|
People: You can work through chemotherapy
BCN: You are not to work during chemotherapy due to germs and low immune system delaying treatment
Because this is so individual, some people may be able to work. I was unable to work due to the face to face contact with customers and not delaying my treatment plan due to the tumour being stage 3. In the first couple of months of my diagnosis I was not mentally strong enough to work and then past that point was the physical restrictions.
|Reality: Low immune system = Bilateral Pneumonia|
People: You'll be ok during radiotherapy you'll be able to work
BCN: Don't be surprised if you have days where you feel the batteries have been taken out. This lasts for about a month after your last zap is delivered.
4.5 weeks of daily radiotherapy = fatigue
My nipple turned brown/sunburnt and then peeled with the help of a miracle tube of hydro gel, the skin under my breast has broken down and the skin under my armpit is so sore that every time I roll over at night I wake up in pain.
During each cycle I went out with my friends and maintained normality. During these nights out I would often bump into people who would comment
A: You look much better than I thought you would
B: Does Cancer has a particular look? Should I be looking ill constantly?
A: You look really great
B: Shit, how bad did I look before?
A: You must be feeling better if your drinking
B: I'm sorry I haven't put my life on hold.
A:Should you be drinking?
B:Can I see your medical credentials?
Some comments have infuriated me, which I am not prepared to share.
From head to toe - changes to your body
during treatment and after
Before your hair starts falling out you may
experience a very tender and sore scalp, this
is the hair follicles giving up the ghost. I
wore a soft cotton jersey cap during this
time and massaged in Argan oil.
During chemo cycles 1-3 my skin had a "chemo
glow" and was flawless, as treatment
continued from 3-6 it became very dry.
My eyebrows thinned, so all the thick long
hairs fell out leaving fine stumpy hairs.
My eyelashes fell out leaving a handful on
each eye. They fell out from the outside in.
Can become very dry and itchy
Started running constantly when the nasal
Dry mouth (current)
The lining of the roof of my mouth peeled off
leaving balls of skin attached to the roof of
my mouth (Internal skin peeling)
Nails - current (finger nails and toenails)
Nail changes can affect all or some of both
the fingernails and toenails. Taxanes,
anthracyclines, epidermal growth factor
receptor inhibitors and small molecule
multikinase inhibitors are the
chemotherapeutic drugs most commonly
associated with nail changes
The type and severity of nail changes vary
depending on the drug, dose, duration and
frequency of treatment, the affected nail
structure, and the environmental factors.
hair loss and now my hair has returned they have grown back all looped and ingrowing, particularly lady garden and leg hairs.
The vein in my left arm is stretched taught which means that I can't over stretch my arm without it hurting. I have pain in my left wrist which hurts if lightly tapped. It has occurred in my treatment arm, where all blood tests, injections, IV fluids and chemotherapy have been administered. I can not have any tattoos or injections in my right arm EVER due to the removal of my Sentinel Lymph node http://en.wikipedia.org/wiki/Sentinel_lymph_node and risk of lymphoedema
|Auxiliary Web Syndrome: Cording|
Hip Joint Pain (current)
I had a bone scan last week where I discovered that I am claustrophobic. I really don't like the CT scanner! From long periods of sitting to standing I am doubled up in pain and stiffness from the hip joint. In the evenings I shuffle across the living room. So I'm currently waiting on the findings of the report.
When I received my diagnosis I bought this book, which in parts resonated and in others scared the shit out of me. I'm looking forward to re reading it, now I'm almost out of active treatment. Lisa unfortunately died and was diagnosed with secondary incurable cancer as it returned in her bones.
But while I lie on the radiotherapy bed, I smile, because Lisa was right - this is CRAP FM.
Tuesday, 27 May 2014
Radiotherapy is the use of high-energy rays, usually x-rays and similar rays (such as electrons) to treat disease. It works by destroying cancer cells in the area that's treated.
Although normal cells can also be damaged by radiotherapy, they can usually repair themselves, but cancer cells can’t.
Radiotherapy is always carefully planned so that it avoids as much healthy tissue as possible. However, there will always be some healthy tissue that’s affected by the treatment and this will cause side effects.
Link for side effects: http://www.macmillan.org.uk/Cancerinformation/Cancertreatment/Treatmenttypes/Radiotherapy/Sideeffects/General.aspx
I've just completed week one of radiotherapy (started 19 May 2014 - 4 days after my last chemo cycle finished)and only have four days this week (thank you bank holiday). I have a review meeting every Tuesday to discuss any problems I may be experiencing.
I have a carpark permit which means I do not have to pay for parking during treatment.
I had two NHS tattoos a week or two after my last chemotherapy cycle finished, they are proper tattoos and the size of a blackhead. They act as markers for the beam, so the coverage over the area is consistent.
Most people waiting for their treatment are men diagnosed with prostate cancer and all seem to share the same taste in stripy dressing gowns.
Last year I completed a Level 4 Certificate in Cancer Care with Staffordshire university and elected prostate cancer as one of my modules, the point being I know the lingo.
So what does radiotherapy entail?
I just take my top off and lie down, whilst they take all the measurements to ensure maximum coverage. I have both arms raised at this point. The room is freezing and if it's not bad enough getting the puppies out, then there is the added embarrassment of having your nipples on stalks, oh jeez (Although I am incredibly lucky to have found the aggressive little ****er early and still have a boob and nipple). I actually don't think I could count the amount of people who have seen my boobs since last September!
I have 3 weeks of general radiotherapy to the area and then 1 week of targeted, which will be the area where the tumour was removed.
I had to wait for 30 minutes this morning as the machines regularly break down and are regularly serviced.
I have my left arm raised and supported by a brace and stay still whilst the machine moves from left to right. The whole process takes between 10-15 minutes.
I have an aloe vera plant to treat the area as it can get darker and sorer as the days go on. I have also purchased aqueous cream which other people have recommended to keep in the fridge for the ultimate soothing effect.
Am I radioactive?
Last zap June 19th
Thursday, 24 April 2014
I HAVE FINISHED CHEMO
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.
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