BA ZI GA bazinger (Sheldon Cooper)

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

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. 

http://www.stephensstory.co.uk/

https://www.justgiving.com/Stephen-Sutton-TCT

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. 

http://www.macmillan.org.uk/Cancerinformation/Cancertreatment/Treatmenttypes/Radiotherapy/Sideeffects/General.aspx

http://www.royalmarsden.nhs.uk/cancer-information/treatment/radiotherapy/pages/side-effects.aspx

http://www.royalmarsden.nhs.uk/cancer-information/treatment/radiotherapy/pages/after.aspx

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

http://cancerchat.cancerresearchuk.org/message/51351

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.

http://www.macmillan.org.uk/Documents/Cancerinfo/Livingwithandaftercancer/Lymphoedematoptips.pdf

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.

http://www.lbbc.org/Learn-About-Breast-Cancer/Early-Menopause-From-Breast-Cancer-Treatment#

http://www.macmillan.org.uk/Cancerinformation/Cancertypes/Breastsecondary/Livingwithsecondarybreastcancer/Earlymenopauseandmenopausalsymptoms.aspx

http://www.cancerresearchuk.org/cancer-help/about-cancer/cancer-questions/menopause-symptoms-after-chemotherapy

http://www.macmillan.org.uk/Cancerinformation/Livingwithandaftercancer/Symptomssideeffects/Fertility/Fertilityinwomen/Fertilityinwomen.aspx

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 

*P.s

http://fecthis.wordpress.com/side-effects/

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 

xx

FEC #5

Monday 31st March 2014

The Penultimate

I got to pick my seat today, a window seat...this is how I roll.......

Almost mopped up all the rogue Cancer cells

This is why I had a sleepless night last night, still awake at 04:10 am and all down to the cannula
I don't know why I worried so much, I could hardly feel it. Thank you chemo nurse Caroline.

If you look closely all my nails are striped 

Out with the old

and in with the new

Back from the Brink

At 6pm on Tuesday March 4th, we contacted the oncology helpline as I was unable to breathe, couldn't mobilise from bed and still had a high temperature and we felt that I needed to be in hospital. We waited for the paramedics to arrive and was hooked up to oxygen and taken in the ambulance to AMU and wheeled into a private room where once again I had a cannula fitted and blood taken to ensure I wasn't experiencing neutropenia.

http://www.cdc.gov/cancer/preventinfections/pdf/neutropenia.pdf 

A junior doctor performed the Oxygen Saturation Test/Arterial Blood Gas Test - where the arterial blood can be tested for oxygen levels and blood is drawn from the artery rather than the vein.

As soon as my blood tests were returned as normal (and not prone to infections) I was moved onto the main ward of AMU and then moved to 23N. I came into hospital able to mobilise to the toilet to being unable to mobilise from the bed to a commode without oxygen and with the help of staff. I was put on IV (drip)antibiotics 3-4 times a day which unfortunately were not strong enough to clear any infection and therefore my health was deteriorating and I became incredibly ill even though I was in hospital. It took 3 days to arrange a CT scan as the doctors suspected a blood clot to the left lung as the x-ray on arrival on both Friday and Tuesday had identified shadowing to the left lower lung. The lung consultant visited me on ward 23N on Friday to explain that he was unhappy with the anti-biotics I was on and that they would not shift any infection I had. He explained that he was not happy with the diagnosis given following the CT scan and said that if he was to believe the extensive shadowing to both lungs on the images, I would actually be in intensive care. He said that if you are unable to breathe during the CT scan this kind of imaging appears. He said that I would be transferred onto the respiratory ward and placed onto stronger antibiotics to clear the infection.  I was transferred at 5:30 on Friday evening. By Monday/Tuesday I was able to walk to the toilet with oxygen, which felt like a huge achievement and by this stage I was being treated for bilateral pneumonia.

The consultant was unsure to whether I had glass effect shadowing to the lungs due to the chemotherapy drugs but the oncologist had already said that FEC drugs usually are not connected to lung damage/shadowing. 

During my stay in hospital all injections, cannulas fitted and blood has had to be taken from the left arm (right arm out of bounds due to lumpectomy and possible lymphoedema)and trying to find a vein they could use started to become problematic, especially as the doctor popped the only vein she could find. 

http://www.macmillan.org.uk/Cancerinformation/Livingwithandaftercancer/Symptomssideeffects/Lymphoedema/Lymphoedema.aspx

Prior to discharge I was able to see my oncologist and consultant to discuss chemotherapy. On Tuesday they discussed my case at the Multi Disciplinary meeting (MDT) and one consideration was that maybe I am allergic to the chemotherapy drugs, however this is not conclusive as I breezed through cycle 1-3. We discussed reducing the dosage from 100% down to 75% on cycle 5 and review the situation prior to cycle #6 and hope I am not allergic and end up back in hospital for 9 days. My breast cancer specialist nurse said that not many people are able to sustain treatment on 100% and so 4 cycles at the highest dose was good going. 

I do not have the added bonus in taking tablets as a `backup' plan for the next 5 years post treatment and as chemotherapy and radiotherapy are the only course of treatment available we want to continue to increase the survival rate and try and stave off a recurrence in the future. 

Hubby bought me some new PJ's

I am now back at home with a rash to both arms
BUT at least I can breathe, eat healthily and have a decent wash.

My next appointment at the chemotherapy day centre is Monday 31st of March for cycle#5 which is 3 weeks and 3 days later than planned, which allows my body enough time to recover from the 9 days in hospital. 

In 6 weeks time I need to attend hospital for an x-ray to check on shadowing on the lungs and the progress of recovery.



P.s

Dear Tami

 

Thank you very much for your entry to our competition to be a Vita blogger. We received almost 100 applications and the standard was very high so it has been a very difficult process deciding who our new bloggers will be.

 

We have tried to pick winners who have a range of different breast cancer experiences as well as being skilled writers. That meant we have had to overlook some candidates who were excellent writers. Unfortunately, although your blog was on our final shortlist, it was not chosen as one of the winning entries but we wish you every success with your writing in future.

 

Best wishes

 

Pete

 

Pete Coles
Editor
Breast Cancer Carepete.coles@breastcancercare.org.uk

47,700 - 50,000 women and 300 men are diagnosed with BC every year in the UK

I had a lovely soak in the bath last night, a place I can light my candles, switch off the lights, play some music and RELAX. A place I can take off my cotton jersey sleep cap and dunk into hot water, although it is cold to the back of the head on the bath tub. 

On pulling the plug, I was still very surprised to how many hairs were in the bath and noticed that my eyelashes are now thinning on the top lashes, my eyebrows are still here, but these are likely to thin over the next couple of cycles.

I'm 5 days post FEC#3 and finished this cycles anti sickness tablets yesterday and still have 3 days left of 7am immune injections -
Nivestim/Filgrastim to go (administered day 2-8 post each cycle). In layman terms it makes more white blood cells in your lower back to counterbalance the healthy ones the chemo are killing off).

http://www.nivestim.eu/patient/nivestim-at-home/step-by-step.php

I have the upmost respect to anyone who has to inject themselves everyday for the rest of their life. 

I had previously pointed out in an earlier blog post that I had found a breast cancer forum very unhelpful and after reflecting upon this, it was because I was virtually surrounded by people zapping my positivity and energy.

http://www.accidentalcreative.com/teams/people-factor/

I am a strong advocate of the Macmillan website and I have since joined the Macmillan Community forums. It has been a positive experience in gaining a wealth of information, where mainly women are coming together to support each other. If you only had one website to access, this would be the one.

I've had the usual uncomfortable dry retching and lack of sleep, hot and cold sweats, stabbing pains to my head and stomach cramps but have breezed through this cycle better than the others. I really can't complain.

I'm still adhering to a good diet, even though it feels like a bit of a struggle, especially when I can imagine the taste of that gherkin pickle in a Mcdonald's cheesburger.... nom nom nom.


Drinking water with slices of lemon (keep a bowl of lemon slices in the fridge)
Drinking shots of wheatgrass when I feel rubbish
Weetabix for breakfast with drizzled honey or 1 banana to 2 eggs pancake mix
Stews (easy - just throw vegetables and stewing steak into slow cooker)
Fresh fruit and veg 
Fruit teas - no caffeine
Popcorn as a snack
Jelly (0% fat trace/8 calories)
Cottage cheese on oatcakes
Rice and Chicken
Natural Yoghurt

Links to check your bits and bobs.
Early detection is the key

http://www.huffingtonpost.co.uk/2013/09/27/tlc-touch-look-check_n_4001415.html

http://www.coppafeel.org/page/boobcheck

http://www.breakthrough.org.uk/about-breast-cancer/touch-look-check

http://www.breastcancercare.org.uk/breast-cancer-information/breast-awareness/being-breast-aware/changes-look-feel

http://www.breastcancer.org/symptoms/testing/types/self_exam/bse_steps



Picture of the day :)

Another brilliant blog post
http://denise4health.wordpress.com/2012/04/11/what-to-say-to-a-cancer-patient-what-not-to-say-to-a-cancer-patient-part-2/

Thanks for reading and any comments welcomed and encouraged 
Anything you'd like to see included?
Tam xx

FEC #3 - We're Cooking on Gas

Catch up from the last 6 days

Monday was a big occasion. I went and found Jim Hawkins from BBC Radio Shropshire as he features a segment in his show where he sits on a bench and randomly talks to people who find him. He posts the location of where he will be sitting and what time on his Twitter feed. I thought he'd be outside the library but I found him inside and completely forgot about being in a public place - I was on a mission.

I wanted to talk to him about early detection, particularly for people under 40 and my treatment plan and that you must be persistent with your GP if you have any concerns about lumps and bumps. It was aired on Friday 17th of January.

I revealed my new 'baldy' look to him and it was the first time I'd been in public since the dramatic hair loss. 

It was emotional ...... my head was revealed TA DA

Jim took photographic evidence and uploaded it to his Twitter account @jimallthetime

http://us4.campaign-archive1.com/?u=f62e5262b6d16e8c404038874&id=64e8c70bf4
(highlight link and right click on your mouse and search with search engine - Go to http://us4.)

As they say in social work

1) Acknowledge
2) Recognise
3) Confront

and Move on AND that's exactly what I did.

I met up with some friends on Thursday evening - happy, bald and comfortable. 

However
I decided to give the wig an outing on Friday night, which would have been alright, except it felt uncomfortable in every way. I ran my fingers through it, I sprayed it with dry shampoo and fiddled and fiddled. I clipped bits up and then took them out. I spent hours trying to make it look as natural as possible. It's slightly Farah Fawcett esque and so quite glamorous for me, so I must have changed my top to go with the wig at least 3 times (absolutely ridiculous if you think about it)

I was hot, it was itchy and it felt like a dead ferret on my head - very self conscious indeed. 

I WILL NOT BE WEARING IT AGAIN!

Someone even questioned to whether I should be drinking at all - advice given -all in moderation - although I did wobble home "my bag". 

Hubster and I went to the Butterfly farm in Stratford upon Avon on Sunday and had a lovely relaxing lunch and walk. I was just the tonic we needed and such a beautiful clear day with blue skies.

Foolery, Sir, does walk about the orb like the sun: It shines everywhere. (Twelfth Night)

So now back to today 23/01/2014

The nurse who administered the FEC today gave me a copy of my bloods. I explained how I had completely changed my diet and she said to continue with what I'm doing,because its working :) My bloods are apparently very good.

Some people lose weight on FEC,some gain weight. From what I have read, FEC is full of steroids, as is the anti sickness medication, so I am happy to be below my starting weight but maintaining it, rather than being a bloater.

The slow cooker is great for stews and the Market Hall in Shrewsbury is such a fantastic place to shop. This week I made homemade hummus and an avocado dip to eat with celery sticks and tortilla wraps with freshly squeezed apple juice. I am following recipes, rather than throwing everything from the fridge into something and hoping it works and even thinking about baking some vegan/gluten free cookies. I have a notebook of recipes to try out and I'm genuinely excited about this. 
The motor on the blender and juicer may burn out soon with all the wear and tear ;)

I have a top up of Senokot (as I never want to experience constipation like before
 ever again)and some eye drops as my eyes are very itchy and watery. 

Love Tam
x

Chemo isn't just Chemo!!!!!!!

Since my diagnosis on 30/09/2013 I have a greater understanding of cancer and in particular cancer treatments. 

Its important to remember that Chemo isn't 'one size fits all'. 

AND

It is this point that needs highlighting.

A chemotherapy drug can be given on its own or as a combination with other drugs. 

Macmillan have a comprehensive list of each individual chemotherapy drug, how each drug is given and possible side effects. 

http://www.macmillan.org.uk/Cancerinformation/Cancertreatment/Treatmenttypes/Chemotherapy/Individualdrugs/Individualdrugs.aspx

The side effects you will experience will entirely depend on the chemotherapy drugs you're having. 

In a previous post last year, I mentioned that my treatment was a combination regimen called FEC which is specifically used to treat breast cancer. 


FEC is made up of 
F - Fluorouracil (5FU) 
E - Epirubicin   (Pharmorubicin)
C - Cyclophosphamide

I am on the highest dose of chemotherapy of this regimen. With my treatment it is the E that has caused the hair loss and I have more E administered that the F & C.

Here is the link to the combination regimen/treatments:

http://www.macmillan.org.uk/Cancerinformation/Cancertreatment/Treatmenttypes/Chemotherapy/Combinationregimen/Combinationregimen.aspx

and more specifically FEC

http://www.macmillan.org.uk/Cancerinformation/Cancertreatment/Treatmenttypes/Chemotherapy/Combinationregimen/FEC.aspx

Each cycle of FEC takes 21 days (three weeks). At the end of the 21 days you start FEC cycle 2. You have 4 to six cycles.

I am having 6 cycles of FEC

My last cycle will finish on 17/04/2014

I will then start a course of daily radiotherapy for 10-14 days about 4-6 weeks after chemotherapy (time frame of treatment to be confirmed)

Apart from the significant hair loss, FEC #2 has felt easier to manage. The first 7 days of each cycle is when the side effects seem to hit me, which have been hot/cold sweats,nausea and tiredness. 

On each cycle around day 3-4 I lose any ability to taste food and I am sensitive to smells (tobacco smoke/perfume)which make me gag.

FEC#2 has been easier than FEC#1. BUT again some people find treatment harder at the start, middle or end (completely individual). As the chemotherapy has an accumulative effect I will update you as and when.

I have made a positive change in my diet, cut out all processed food from my diet, only have one coffee as a treat in the morning and eat fresh fruit and veg/raw/juicing. I have also managed to exercise a little this cycle(#2).

I lose half a stone cycle#1 and have maintained a weight lose of 3-4 lbs through healthy eating and juicing this cycle. With Triple Negative Breast Cancer, they recommend that you maintain your weight during chemotherapy.

For the last two weeks, my skin has been baby smooth (chemo glow) and I have read that this is because the chemotherapy drugs remove all the toxins from your body. However last night I had a spot breakout.

Day 1-7   Side effects and drugs/injections given to counterbalance nausea and low immune system (stay indoors due to feeling rough)

Day 7-14  Avoid people/public places - low immune system (stay indoors or go for a walk)

Day 14-20 Fairly normal activity

Day 21 Next cycle


Thanks for reading peeps x

Bear with No Hair

Thursday 9th of January 2014

http://www.durkbond.com/bear-with-no-hair1.html (Click image to enlarge and read)

The term "Fuzzy Wuzzy" originated in the 1800s.  British Soldiers gave the nickname, "fuzzy wuzzy" to the Hadendoa warriors that were a nomadic tribe along the Red Sea in Sudan. The Hadendoa were a formidable fighting force that gained the respect of the better trained British forces. The Hadendoa warriors wore their hair matted which gave a "fuzzy" appearance.  

The British were eventually victorious over the Fuzzy Wuzzies but with a greater fight than other enemies.

Rudyard Kipling wrote a poem in 1890, Fuzzy Wuzzy that praised the Hadendoa warriors for their fighting skills. "So 'ere's to you, Fuzzy-Wuzzy, at your 'ome in the Soudan; / You're a pore benighted 'eathen but a first-class fightin' man"

Today Fuzzy Wuzzy is known more as the nursery rhyme many of us learned as children.

The Original Fuzzy Wuzzy Rhyme

Fuzzy Wuzzy

 Fuzzy Wuzzy was a bear, 

Fuzzy Wuzzy had no hair,

Fuzzy Wuzzy wasn't fuzzy, was he?

Long establish nursery rhyme, Author unknown.

The last line had many variations:

"Fuzzy Wuzzy Wasn't so very Fuzzy, was he?"

"So Fuzzy Wuzzy was not fuzzy, was he?" 

Click image to enlarge

Home birth

When I was 18,  I worked in a nursing home as a part time evening care assistant and one evening I responded to an alarm bell from a lady with dementia. 

She was sitting on the toilet extremely agitated and confused with tears streaming down her face.

It was obvious she was in excruciating pain

WHY?

Because she had a fully sized elephant poo wedged in her bottom.

Shameless selfie ;)

So just when you feel that Cancer has humiliated you enough, you spend well over an hour rummaging around in your own backside with a bottle of olive oil from the kitchen to assist with the proceedings. 

http://kriscarr.com/blog/your-guide-to-healthy-poop/

'You should consider yourself a hero'

Party trick gone tits up

My new party trick of pulling hair from my head, because I can - has slightly backfired in that I have a patch or two of baldness -which I just can't disguise (schoolgirl error). It seemed funny at the time.....

BUT without hair I feel that my head is too small for my body. 

I am indeed the shrunken head guy from Beetlejuice and that is clearly the dude on the right in this gif. However he appears to have a ponytail of hair which I had not previously noticed and is clearly sporting more hair than I currently have or can currently boast. 
Bugger.....