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Patients deserve to have a choice.

28/6/2015

I recently did a guest blog post for the Beauty Despite Cancer website about alternative cancer treatments which you can read here
I strongly believe that as cancer patients we need to know all the facts before we can make an informed decision about our treatment,

Imagine my shock then to see a video from CRUK a few days ago that basically patronises those people who choose to take an alternative approach to healing their body.
I found the video insensitive and offensive to the many people who have gone to the trouble of searching for information, often for many months, and have then made an informed decision about how they want to heal themselves from the cancer.

It seems that the video has angered quite a few people; Chris Wark of Chris Beat Cancer in the US posted the video on his FB page and said that “CRUK is really ratcheting up their anti- nutrition/natural therapy propaganda” and there were over 100 comments all agreeing that CRUK had overstepped the mark in patronising those who choose not to go the conventional route of cut, poison and burn.

This was the whole point of the blog I did for Beauty Despite Cancer – patients need the full facts, honest facts, not untruths and misleading facts. We are smart enough to make up our own minds – it’s our bodies after all.

xx Kaz xx

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My story - by AJ - Part 2

24/6/2015

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Waiting in the corridor, letting my husband have the only available chair. My first appointment with the consultant and the results are in.
Endometrial cancer - Total disbelief!

The consultant, Mr A, calm, clear, sympathetic and measured, explains the next steps: MRI (but given a choice of CT as some women get claustrophobic with MRI), Chest X-ray, then total hysterectomy with bilateral salpingo-oophorectomy. The cancer apparently looks quite well-differentiated. To the consultant’s surprise, I ask to see the images – I’m now thinking of getting a copy and having them framed. My concerns – all about my husband. He has Parkinson’s, young onset, has now had it for several years, even though he still has years to go before official retirement age (never knew prior to his diagnosis that younger people could get it and his GP originally told him he just had Repetitive Strain Injury, such a massive mis-diagnosis). He cannot cope on his own and I had to stop work a few years back to become his full-time carer. What time frame are we looking at? How long will the recovery period take? Is there any help available? How will he visit as he can no longer drive? Has he been able to process this information? Is he OK? Will this cause him to have a massive panic attack?

Our son is at university studying Medicine, and it is now the start of his exam period. I cannot tell him. It would be so unfair to ruin his chances of good results. I really need to tell him. I need him so much. Just be brave!!
The specialist cancer nurse had not been at this appointment, but the consultant provided me with some info booklets and gave me her contact number, telling me to get in touch.

Vaginal ultrasound appointment cancelled – now I’ve had my diagnosis and it has all got to come out, the ultrasound is no longer required.

Sleep is elusive, I drift off as I’m so shattered only to wake again a short while later. My head is pounding, my brain a tumult of emotions, will not let me rest. So, so tired, completely washed out. The pattern repeats. How I hate 3.00 a.m. and 4.00 a.m. and 5.00 a.m. Not very keen on 2.30 a.m. either.

My husband has been so good. He’s been trying his best to give me some support. He finds it really difficult as he cannot manage to do a great deal, so even a cup of tea is greatly appreciated. Empathy is also a struggle, he has improved on this front since he was diagnosed with Parkinson’s. Prior to his diagnosis, he was never ill and couldn’t understand how anyone else could be for more than 5 minutes!! All the stress is taking its toll on him, he is beginning to find it all too much, and so his Parkinson’s symptoms are getting worse.

Facebook is wonderful when you don’t feel up to talking. Just a quick message to a few close friends initially. Lots of support and love in return. No need to reply straight away. It’s also OK to chat at 3.00 a.m., often my darkest hour.
OK, now I’m ready, ring the cancer nurse, just to introduce myself:
“You’ve been told that your op is going to be at Hospital X, but we can do that operation here at Hospital Y, so I’ve re-arranged that for you. You can have it on June 3rd.” NO. Son is still at Uni doing his exams and I’ll need him back home first.
“I’ll see what I can do – how about if I can squeeze you in here on June 17th ? Mr D would be your new consultant. It would be much closer for you.”
Not too sure really.
“I’ll book you in for the June 17th then.”
I’m unsure.
“We do hysterectomies here all the time.”
“Have a think about it and let me know.”

So fragile. This made me so upset. I cried, really cried for the first time since the diagnosis. I didn’t want to change to a different consultant – Mr A is a highly regarded, top guy in this field - and the hospital he’d specified has a specialist gynae cancer centre.
After calming down, I tried to ring the nurse back. She only works part-time and so there was no-one available to talk to about this. I tried to contact Mr A’s secretary at this hospital, but again no reply. I then tried his secretary over at Hospital X, where my op was initially supposed to be. Great, I got through, explained the situation and got the op re-arranged again. So now back where it was supposed to be all along and no change of consultant. So relieved!!
After a few days I pluck up the courage to ring the nurse again. She is aware of the changes I’ve made and seems fine, as she says the decision is ultimately mine. I apologise for any inconvenience, then proceed to ask about the appointments for my MRI and chest X-ray as nothing has arrived and they need to be done quickly if my consultant is going to have the results ready for my next visit. She investigates and informs me that the chest X-ray request has for some reason been sent to a small local hospital, but no-one knows about the MRI, it has apparently gone missing.
I start to receive several NHS letters; cancelling my appointments with my consultant and the pre-op assessment and issuing new appointments for the wrong consultant and giving me a new pre-op date. Along with these I receive a letter about attending for a chest X-ray, but still no MRI date.
How I just love NHS admin.
Finally, after a few more phone calls, I get it all sorted. Ignore the cancellations and keep those initial appointments. Disregard the new appointments and the X-ray one too. I get a date for the MRI and I’m told to just ask for the X-ray to be done at the same time.

Just to spice up my life a little more, as I’d had a couple of infections in my left breast recently, and had had a small benign lump identified in the same breast about 18 months earlier; my GP arranged for me to have a mammogram, see a breast cancer consultant and have a breast ultrasound. The appointment for this lovely trio was early on a Saturday morning, in the week between my other hospital visits. The radiologist is a really lovely bloke, knows a friend of ours as he is a senior radiographer, and has also known my gynae consultant for years. Nothing but praise for the gynae guy, but as he tenderly runs his transducer over my breast searching for the offending mass and any changes, we swap embarrassing stories about our friends. Luckily all was fine in the breast department – hurrah!

MRI day: unsure about this as I am a little claustrophobic, but there is no way I can wimp out. My husband had one a few years ago to check if he really had a brain!! Actually to check for a brain tumour, as this possibility had to be eliminated prior to his Parkinson’s diagnosis. He had found it un-nerving and extremely noisy. Fortunately for me, I never fully entered the enclosed space, going in feet first. Classic FM soothed me and I kept my eyes closed throughout. All in all a relatively relaxing 45 minutes. Then off for the chest X-ray and a scant few minutes later headed home.

Cannot believe just how tired I am.

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My Story by A.J Part 1

17/6/2015

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This is another guest blog by one of our peach sisters.

"Mid April and the sun was shining, the air was warm, full of the promise of spring. I walked down the hill on the narrow path between the sheep-filled meadows. Things were definitely improving, my confidence was gradually returning and now I could even venture out on my own occasionally. It had taken a long time to get to this point, but slowly my life was returning to normal – well close to normal.

Little did I know what this day would bring. Just a quick visit to my GP, to chat about my meds and check on my blood pressure. No big deal. I happened to mention in passing just as I was about to leave that I’d had a little bit of bleeding recently, but not much. I just wondered if as my stress levels, which had been sky high for so long, were now dropping could be the cause and I was menstruating again. My GP thought that could be a possibility, but that it was a good idea to get things checked out just to be on the safe side.

Smear test, Ultrasound and Gynaecological appointments were duly arranged. They would be waiting for me with their instruments of torture sharpened and at the ready.

I had been a bad, bad girl and not had a smear test for quite a while. Life was complicated and challenging enough and as I hated having them, it had been easier to ignore the letters and just forget all about it. One of the practice nurses performed the smear test: definitely uncomfortable, a bit painful at times but I coped just with a little squeal or two. She was very reassuring, my cervix apparently looked fine to her experienced eye.

The hospital appointments were arranged in a rush and there was obviously some confusion. I got a phone call one evening to attend for a gynae appointment the following morning. I asked if there was anything I needed to know, but was told just to turn up. I arrived at the gynae clinic all on my own, as a friend was taking my husband out, and discovered I was having an hysteroscopy. I did not know what to expect. Sorry ladies, but it was horrendous. The nurses were fantastic, really supportive and patient. The procedure was agony. At first, an attempt was made to dilate my cervix to enable the small camera to be inserted, but this was impossible, it was far too painful. A couple of local anaesthetic injections were administered into my cervix and finally the camera was inside my uterus. The cervix had been numbed, but not inside my womb. I’m sure it was really a huge movie camera and all the attending crew for making an in detail documentary that had invaded my womb. As the camera was busily being positioned to take the requisite pictures, I was cutting off the blood supply to the hand of the lovely nurse who’d let me hold on (she may never knit again!) and was trying valiantly to distract me. Then a couple of biopsies were taken, oh such fun! Finally all done, but I’d turned blue, needed oxygen and extra pain relief. I was also extremely nauseous. The nurses were so kind, a wheelchair appeared and after a while, when I could get off the torture table with help, I was moved to a bed in a quiet bay to recover. Blankets, tea, biscuits and cake were all provided and the nurse whose hand will never be quite the same again, kept coming to check on my progress. After a few hours, I was deemed fit enough to go home and I slowly made my way back to my car and drove equally slowly home.

Apparently some women hardly feel a thing – lucky devils! Others experience a little discomfort but nothing they cannot cope with – if only. Quite a few need a local anaesthetic, but then they are fine – no such luck. Those wonderful nurses have seen it all and yet were still surprised that I did not swear and stayed on the table, even though many ladies in far less distress are reduced to swearing like a trooper, or trying to escape their fate.

A welcoming bed awaited at home, more painkillers and eventually a fitful sleep. My husband returned home and was shocked to see me in such distress.

The following afternoon, the appointment letter from the hospital arrived. I had to attend the gynae clinic, for a one-stop shop appointment: ultrasound scans both external requiring a full bladder and then vaginal; then an hysteroscopy. I was not to drive and had to be accompanied and it also gave me a little info about the procedures. Such a shame the appointment was for the day before. If only I had known and been a little better prepared for my ordeal!

The ultrasound scans had not been performed as I was blissfully unaware that they were going to be done, and none of the staff in the clinic had known either. Another appointment arrived shortly after with a new date for the scans. I duly attended, had the external scan but was told the vaginal scan could not be performed as it was too soon after the hysteroscopy and that the scans should’ve been done first. Yet another appointment was therefore required."

Part 2 will be posted soon.

xx Kaz xx

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A poem by S.Z

12/6/2015

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One of our peach sisters used the power of words to get her feelings out and found it quite empowering. She has given her permission for me to share it with you.

THE PASSENGER... You started as a microscopic cell nestled deep in my womb.
Silently summoning strength to multiply and grow.
I carried on with life, oblivious to your presence,
Unaware, unfettered, unchanged…….

My body discovered you first…before my consciousness.
Little clues that you were growing, an alien passenger
changing my natural routine to accommodate your hijack.
Slowly turning my world on its axis

It took a while to track you down, a sly traveller.
The surgeon’s skilful fingers tracing your tracks, scraping the evidence.
I imagine you shrinking away from the scalpel’s bite
all warm and cosy in your cuckoo’s nest

The doctor told me your name….an age old name.
Cancer… she said.
You surprised me…your name isn’t well known in my family.
I didn’t think you would visit me, uninvited and unwanted

It took a while for me to feel your name on my tongue,
to get my thoughts and feelings about you in perspective
Did you really think I would just sit back and accept you?
Did you really think I would shake with fear in your presence?

I will fight you every step of the way.
I’ve had you ripped from my body and still stand defiant.
Had you chemically castrated and wore my baldness with pride.
Blasted you with death rays and still I fight on.

You picked the wrong person Cancer.
How dare you think you can take my body for yourself!
One day soon you will find yourself homeless, a vagrant.
One day soon your name will be worthless, powerless.

If you have a piece of poetry that you would like to share then please email me at wcsuk@hotmail.co.uk

xx Kaz xx

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My Story - by AJ

3/6/2015

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This is a guest blog by another of our peach sisters.

"It was Jan 2013, I hadn't long turned 20. I had never had a steady period ever since I started them at 11 and not like your "Normal" person. I couldn't pin point them at all, they came when they fancied! Times they would last, times could be a day and half if that.   My body just liked keeping me on my toes.
I hadn't long started sleeping with my then boyfriend and after every time there was blood, not just a little but quite a bit of blood. So I went to the doctors and after a purely embarrassing check by a doctor who didn't look that much older than my self, she decided to test me for STIs. Truthfully I was insulted as firstly she hurt me then said this.
As time went on I didn't hear anything from the doctors, I'd had blood tests in the mean time. So roll on to March 15th 2013, My mums birthday actually. I had a doctors appointment and she just said I was suffering from anemia due to the lack of blood however she still didn't know what was going on. I remember this doctor; she looked a bit like she should be out hugging trees she had big curly hair!
So I took her advice and I carried on, of course I wasn't going to think anything different.   27th March 2013, I was at my then boyfriends house, we'd been out then I had been playing a board game I remember, then I went upstairs to the toilet. I was on the loo as normal and sorted my self out as it was my time of the month then I must have moved a couple of feet if that and it felt like I wet my self, I was sodden.
Quickly I went back to the toilet and for some reason I had brought my phone with me, so I text for help and I began shouting. I could hear drip drip drip . I remember standing up and looking to see what it was and it appeared to be a large clot of blood hanging down. It was vile.
Still to this day I am not sure how long I was waiting , I felt dizzy and I tried not to fall into the bath as this was next to the toilet . The next thing I was on the floor and my hair was everywhere and it was being held back while I was trying not to be sick then I remember waking back up and still no ambulance but then I woke up and these two men appeared. I'll never forget these men, I owe these men my life. They were so kind I remember waking up and asking them for a bacon sandwich, of course I was hungry.
They had trouble getting a drip in my arm I as I had lost that much blood, two - three drips later I was moved I was taken to hospital, I remember as I was awake and getting back to my cheeky self they put the blue lights on to make me smile. I was then transferred to another hospital.
I met two women, one with dark hair and kind eyes and one with spikey funky hair. I was taken to be examined by the doctor and I was packed, this lady with such kind eyes, she kept me calm. I was so scared; I remember crying for my mum through it all; they injected me to try calm me down.
I was really scared, truthfully thinking about it now i'm filling up. I'd only been in hospital for breaking my arm as a child and tonsils being removed. I remember I got to see my mum and dad about midnight that night the kind nurse brought them too me along with a tuna sandwich. We had no idea what was going on.
The last I saw of this kind nurse was 5am the following day when she came to take blood. She rang up asking after me at a later date. I never saw her again, I'd love to tell her I'm studying to be a nurse because of her kindness."

This is the first instalment of this ladies story - more to come.
If you are willing to share your story then please email me at wcsuk@hotmail.co.uk
xx Kaz xx

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Patients deserve to have a choice.

My story - by AJ - Part 2

My Story by A.J Part 1

A poem by S.Z

My Story - by AJ

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