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

The quiet before the storm

Dear Diary

Last FEC #4  Thursday 13th February - 6th of March (FEC 4 Cycle)

Hospital admission Tuesday 4th of March

Discharged Thursday 13th of March

Next FEC chemo cycle # 5 Monday 31st of March - reduced dose from 100% down to 75%


*
My Oncologist postponed my next treatment by 3 weeks(a whole cycle behind)to ensure that my body had recovered from the IV antibiotics and hospital stay. 

No evil drugs killing off the healthy cells in your body for 3 weeks and a mini break mentally = appearance of hair (collar & cuffs).

Which is a temporary addition as the E in FEC is making a come back on Monday. For future reference, I'm happy that it appears to grow fast.

*
I went to the GP's this week. He said `I suspect this isn't a life choice, I mean you haven't been out and bought a pair of Doctor Martins have you?' (after taking off my woolly hat). I was glad to see a Doctor with a sense of humour and able to register how far he could push it. 

Anyway I went to discuss my rash, the one I was discharged from hospital with. The GP suspects it is a reaction to the IV antibiotics. So lets compile a list of the things I'm allergic too ......It appears to be growing.

I also asked for medication for the reduction of keloid scarring for my booby and some heavy duty cream for my evil little `friends' that appear through times of constipation and diarrhoea.

* 
The pharmacist said that due to manufacturers delay she would not be able to complete my prescription today. She asked me if it was urgent. I lovingly told her that I had a lumpectomy in October and that the cream was to reduce the raised keloid scarring. At some point during `my moment' I realised she actually meant the cream for my little friends. 

http://www.nhs.uk/Livewell/skin/Pages/Keloidscarring.aspx

Let me introduce to you, my keloid scar, a waving Snowman. I had chicken pox (poulet pox) at 15 on the French Exchange and ended up being on house arrest, bathing in soothing medication and having a thermometer inserted into my bum (and missed all the parties).

AND then the chicken pox scar grew .


*
I reluctantly registered with the DWP for a Personal Independent Payment but discovered that they have an incorrect date of birth for me and now it's up to me to prove to them that I am right. I am not well enough at the moment to be faffing around with producing a birth certificate, so the claim has been pulled. Bit ironic really as PIPs is the replacement of Disability Living Allowance and in place for people that often struggle with daily living activities and mobility. 

*
I went to have my bloods taken today to ensure my immune system is ready for the onslaught on Monday and I have cording of the veins, this is where the veins feel hard and `cord' like, the veins lose their elasticity and feel tight, which makes your treatment arm sore, like you've had a couple of Chinese burns, the E out of the FEC ruins/damages the veins (Mr E is quite a twisted piece of work). My veins will gradually return to normal in the future.
I have had this for a while, but the nurse clearly noticed it today, in trying to bleed me dry.


*****
For anyone that missed this programme on BBC 3 please follow this link:

http://www.bbc.co.uk/iplayer/episode/b03zf3tg/Kris_Dying_to_Live/

It's available to watch until Wednesday 2nd of April.

and then you can watch this thank you from Kris founder of Coppafeel #RETHINKCANCER

http://vimeo.com/90325680

http://coppafeel.org/

♥

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

Temperature

A normal temperature is around 37C (98.6F)

What I failed to mention was that my temperature has been between 38-39.9 C on occasions over the last week and it wasn't until we purchased another thermometer that I started to take it seriously. So the bad arse in the ear thermometer is clearly giving some freaky kinda shit reading and the new under the armpit - a more realistic reading. 

I have to inform the oncologist line if my temperature hits 37.5C

On Friday at 16:30, after no longer being able to ignore that I needed to go to hospital I called the oncology helpline - Shropdoc - with a temperature of 38.2. I was told to make my way up to AMU and was given a side room. I had my blood pressure checked and was running a temperature of 38.6c. I had my bloods taken and almost passed out, blood/sugar test,  (all clear, NO neuropathy) cannula fitted and antibiotics run through followed by a saline solution. 

I felt very chesty and was given a chest x ray only to discover that there is shadowing on the lower left lung and to take some hard core antibiotics twice a day for the next 7 days. 

I am now so breathy that I am hyperventilating just mobilising from the sofa to the toilet or from the bed to the living room. Not being able to breathe is really fricking scary.

We managed to get discharged at 23:00

Saturday and Sunday night consisted of a temperature higher than when I was admitted to hospital, hubby gave me paracetamol and made me sweat out the heat. I'm not going to lie, I didn't think I was going to make it at one point - I know this sounds melodramatic, but believe me when your husband is helping you with the most basic of things and you see the dread in his face and the person you seen in the mirror is a bald headed sweaty mess who can hardly breathe .... (all I can say is that if I still smoked I have no doubt that I would not be here).

So this morning I managed to walk to see my GP accompanied by my husband who was supporting me and subjected to walking at a snails pace to see if there was anything they could prescribe to bring my temperature down.

I also called the Chemotherapy day centre and explained that there was no way my body would be able to cope with a cycle just yet. They agreed that I need to finish my course of antibiotics and so FEC#5 has been delayed until next Friday and I'm off to see my oncologist this Thursday to discuss my side effects and how we can manage them better :)

FEC # 4 cycle - Thursday 27th of February 2014

I have 6 days until my next cycle and this cycle has been an absolute horror. FACT

Chemotherapy has an accumulative effect and boy is it accumulating!

I have been evil personified this cycle and not the easiest person to be around.

I have NEVER experienced pain and the agony of faecal impaction like I have this cycle (and I thought last time was bad enough)and I was close to passing out on more than one occasion. I have accepted that this is part of having FEC administered. It's clearly very difficult to get a happy balance using lactulose, Movocol and Senokat/Prune juice to produce the perfect bowel movement.

I have also had the added bonus this cycle of strange thoughts, my mind has been playing tricks on me and I can't really give you an example, because it wouldn't make any sense and in reality you would think I've gone slightly bonkers. It took a couple of days to figure out that the thoughts I was having were non nonsensical. Whether this was down to taking Emend, the Rolls Royce of anti sickness tablets or not, I'm unsure. But I will not be taking them again.

I have been on the Macmillan website and asked if anyone else had experienced these thoughts and I have been informed that this is chemo brain - where you feel 'a bit fragmented like jigsaw pieces not fitting together' and could be down to the steroids.

My energy levels are currently running at zero % and my eyes are really sore, warm and irritable as I have few eyelashes left. I have mouth ulcers and generally pretty run down.

Roll on next Thursday at 14:30 for # 5 - Not because I want to experience all of the above so soon, but I will be a step closer to finishing chemotherapy.

Hump Day - I'm feeling better

Hump Day

I've just got out of bed after two days. I've had muscle and neck aches and aches down the both sides of my body and feeling like the light switch has been dimmed. I couldn't eat and I couldn't drink, which did not help with the sore throat and soreness to the roof of my mouth. I feel like I've spent the last two days in and out of consciousness! 

I've woken up this morning feeling out of sorts but much much better and realised that I may have been hallucinating or certainly that my mind has been playing tricks on me. 

The sun was shining and I managed to have a shower and walk to the quarry. The walk was slow and I took baby steps to get there and at one point was worried how I'd get back.



I've now managed to eat and drinking water water and more water and hopefully back on track :)

FEC # 4 February 13th 2014

FEC # 4 

It feels like a while since I've posted to my blog.  I've been researching my family history on Ancestry.co.uk with my 14 day free trial. I love genealogy and I started to put together our family history in 2007. I've been cross referencing to the site to the National Archives records, local churches and parishes. Its been a pleasant distraction and something I have been able to comfortably concentrate on.

Concentration is allusive at the best of times at present. I have so many projects I thought I'd be able to attempt or complete but NO - It is not happening and I'm not going to beat myself up over it. 

I recently posted a Triple Negative Infographic to my Facebook Profile, but for those of you independently reading this, here are two links to this information and current research.

http://www.breakthrough.org.uk/research/treatment/targeting-hard-treat-breast-cancers

http://www.breakthrough.org.uk/news/all-news/triple-negative-breast-cancer-facts

I watched up to series three of Breaking Bad, but found it a bit heavy at the moment.

I had an appointment with my oncologist on Thursday 6th of February (accompanied by my heavily pregnant sister) and I discussed that my hand, wrist and veins were tender, sore and aching. My veins have hardened and this tends to happen during treatment. I was given some Emend anti sickness tablets (The Rolls Royce of anti sickness tablets) and went to the hospital pharmacy to hand in my prescription and collect. The Pharmacist called me in whilst my head was down and rummaging in my handbag. After she called me MR,  I turned my head to my sister and gave her a sideways glance and my sister instantly knew she was going to get it. The Pharmacist was extremely apologetic and went a lovely shade of red. I may be bald, BUT I do not look like a man.

Within the week I will become an Auntie for the first time - E X C I T E D

Hubster and I went to the Birmingham Art Gallery and Museum the Saturday before my fourth cycle
http://www.bmag.org.uk/ and ate an all you can eat buffet on New Street for £5.00 to which my body was screaming "how can you overload me with that much bad fat",  I felt seriously bad about eating it and then went to the Nags to meet a friend and watch the rugby. We were home by ten and that was the extent of my socialising at night during this cycle. I feel that my energy levels are depleting.

My mum picked me up for FEC cycle #4 and I as I jumped in the car said " I'm so bored of this now". I have had enough, It's draining, it makes me feel like shit, I have no energy, I feel constantly sick for a week and yet I only have two cycles to go and then 3 weeks of daily radiotherapy. My teeth hurt and I think it's because I am constantly clenching my jaws.

We would love a holiday after this to relax and recoup - but have no end date to treatment. 

My last chemotherapy is the 27th of March and then my final and last chemo cycle finishes on 17th of April and I hope to return to work on reduced hours the week after. I have my Look Good Feel Better workshop on the 22 April from 2-4pm and then my 6 month check up with my specialist and surgeon at PRH Hospital on the 30th of April.

I have expressed to work that radiotherapy may leave me completely pooped ( this will start 3-6 weeks after chemotherapy finishes).  I have been told by my breast cancer specialist nurse that most people are able to work around daily radiotherapy but can leave you drained and knackered and sore from the radiation rays zapping your skin. Radiotherapy will be at RSH. I will return to this in my blog when I have some dates available.

Mum and I arrived at the Lingen Davies Centre at 11:30 -  ready for round 4
And so the vein which has been used for FEC # 1/2/3 is now so sore and tender that #4 had to be administered on the side of my hand - the nurse decided to administer into this side vein after I jumped into the middle of next week when she lightly touched the last injection site. It was not a pleasant experience.

The nurses on the day centre chemotherapy ward that I have spoken to, have no idea what The Hamar centre are able to offer in relation to services for people receiving cancer treatment and I have now been able to tell two nurses about The Little Princess Trust and the donation of human hair to provide a wig for a child affected by hair loss.

I am still wearing my cotton jersey cap in the house and in bed at night and was able to take it off in the car as it was nice and warm. I will be super happy when my hair grows back and I have a little more coverage, which will allow me to take my hats off permanently.

Incidentally the Rolls Royce of anti sickness tablets have had no effect :(

Back Seat Driver Selfie taken Saturday 15th of February 2014. 

See you soon 
Love Tam
xx