My Family and other Animals

Before going any further on this blog I have Just noticed that you can insert pictures!


So lets have a go.........


I'd like to introduce the family.....................

You have Kayla, me (Stu)

Big Bruv (Chris), Sis (Cara) and Little Bruv (Zak).

Christmas morning 04

Us at Chris's 6th Form Ball

The Guys - Chris is now 18 and Zak is 9

My Girls - Cara (16) and the equally gorgeous Kayla

SO WHAT IF OUR CHILDREN ARE GINGER!!!!!!!

WE STILL LOVE EM!!!!!

Kayla, Her Mum (MJ), Her Sis (Shabba)

and a couple of "Northern" Aunties (Lainey and Liz)

I Don't Like Mondays........

Wow! Sunday night what a night, we were up most of the night. No! and before you ask I am not down the pub bragging about my lovemaking skills!

Kayla did not only have an emotional roller coaster ride throughout Sunday but the worst episode of nocturnal pain ever. It took everything in the medicine box to hit the pain, plus 4 hot baths!

It would have only been 3 but after the 3rd Kayla asked for a massage with a nice scented oil. I duly obliged. Now because of all the bathing recently in nearly boiling water, Kayla's skin is a little dry to say the least. I used quite a bit of a "Neals Yard" product (Exotic skin oil.....Anagram for "what a wiff!") At the end of it Kayla turned to me and in true Andy from little Britain fashion said,

" I don't like it ........I stink!"

Off she went for hot bath number 4. When she returned she looked like a cross between a Lobster and a freckly Prune! It did the job though as she soon fell asleep (due to the heat and exhaustion) upside down on our bed.

Monday came and Kayla was tired but ready for some Malted Milk Biscuits!!! as all that swimming during night must have made her hungry.

I decided to phone the "Iain Rennie Hospice at Home" Nurses (who operate in the Bucks area and are caring for Kayla and me) I updated them and sought their advice on the nocturnal pain. Nurse R is great, she arranged for a Doctors visit and repeat prescriptions for Kayla's depleted pain relief armory.

Our GP arrived and examined Kayla.

Doc: "You look a little red and feel hot, do you have a temperature?

Me: "No She's spent the night immersed in hot water!"

Doc: "You look kind of shriveled are you feeling old?"

Me: "Its the 17 bath foams and the 1000 degree water"

Doc: "Is that a rash around your mouth and cleavage?"

Me: "No Doctor, they are Malted Milk Biscuit crumbs!"

In all seriousness our GP (Bless him he is fantastic) did not give Kayla the big medical "I know best" examination. He sat at her bedside and talked to her like a family friend. She explained he listened. The upshot was an increase in potency of her medication.

I wish that you could get hot water and Radox Lavender bath essence on the NHS, this nocturnal bathing lark is getting expensive!

I escorted the GP to the door. He turned and faced me as I thanked him. "Keep up the good work , you seem to be coping" he commented, as he left. Am I becoming paranoid or did he look at me rather strangely as he spoke?

I closed the door and caught a glimpse of myself in the mirror. Bloody hell! I looked like a cross between a Zombie and "Worzel Gummage" I am amazed he did not give me 50p for a coffee as I let him into the house. I had a beard and hair that a hard-core dosser would be proud of! I should not be here caring for my wife I should be in the local Shopping Center armed with a pathetic looking skinny dog selling the "Big Issue!" whilst sipping on killer strength lager. Eeewwww!

Armed with a razor and some shower gel it was my turn in the bathroom!

Sunday Bloody Sunday

Sunday......Mmmmm, the day did not start well. Infact I cannot remember for a long time any day starting that fantastic. Since I returned from the Falkland Islands after Kayla was diagnosed with the cancer recurrence, most days start the same, pretty poorly.

I normally wake up still tired (well one notch up from the exhausted state I went to bed!) and a little confused and bewildered after being torn from the same recurring dream/nightmare where I am searching for a huge bunch of lost keys whilst being chased by a giant blue,slimey, knobbly, ugly goldfish?? (any dream therapists out there "fill yer boots") Kayla normally wakes up tired, still groggy from all the drugs and nauseous.

Today was different, we were both still tired and Kayla had all the other "normal" troubles. However, oh yes a bigger and more apparent trouble lay on the horizon, Kayla was quiet! Anybody who knows Kayla will know that she is not quiet, one thing she is not is quiet, she is not a quiet person. Don't get me wrong here, I don't mean she is a chatterbox or is part woman part megaphone and I don't mean she likes to play the big bass drum over tea and toast. She just has a presence, she is there, in a room you notice her, she kind of stands out. Today was different, she was quiet, she was in stealth mode, something was up. My problem was going to be how to identify and rectify her problem.

I have found during my time as the "prime carer" that the line "Oi what's up with your face? It looks like a bulldog licking piss of a thistle!" does not reap the reaction that a "prime carer" is normally looking for when tending to the infirm. A cunning approach was what was needed here.

Silliness aside, as a carer I feel that the best possible way to be a carer is to care in such a way that the person you are looking after does not realise that you are caring for them. A kind of transparent methodology of caring that gets the job done but without any drama, just business as normal in a normal household. The last thing they need (in my own humble opinion) is to feel that they are so weak and feeble that someone has to do everything for them. (Damn if she reads this my secret is out! Doh!)

This said I sprung out of bed with the grace and poise of asthmatic tortoise and started my morning ritual or trying to get Kayla to enthuse about breakfast! I offered "Badgers nipples in aspic", Hummingbird egg ommlette, paw-paw and lotus blossom souffle.........nothing, not even the finger that makes it's way from under the douvet. Things were dire, last night the pain (every night without fail, nocturnal acute pelvic agony) had been brutal, 3am until about 6:30am, two hot baths, gallons of Oramorph and other pain killers barley scratched the surface. The thing that puts Kayla to sleep is exhaustion and mental grit.

I retreated and decided to concoct my signature dish........a weak coffee and some malted milk biscuits!! In addition, once her gastronomic juices were flowing I would ambush her with some slices of fresh mango. See being a carer is all about cunning!

On my return to the bedroom I was greeted with one of my all time horrible things, my Achilles heel, shoulder, armpit and spleen all rolled into one. No not snakes, not creepy-crawlies, not West Life or or even the X-factor. Something much more painful and troubling to me.....Kayla was crying. Not "I'm a little pissed off today" kind of PMT style crying. No, this was huge pitiful body wracking sobs, heart wrenching noises of absolute desolation and fear. She looked about ten years old all terrified and huddled on the bed, with her arms wrapped around herself. With every anguished noise that came from her my heart was torn into a thousand shreds. She looked up at me and appologised for being weak!!!!! OMG!

It dawned on me, that since my return I had not seen her cry once. In front of our children she is a rock and they had only just gone back to Boarding School. What with the anxiety of a rapidly growing tumour, starting with a new Onc team at a new and unfamiliar Hospital and the specter of "what if it doesn't work" hanging over her 24/7, no wonder the pressure had got to her. The problem was suddenly apparent, you did not need the brains of an Arch Bishop to work this one out. I took her in my arms and let her cry. I did not ask her why or what, being there and holding her was what she needed at that time.

As they say up North..... "A right good cry does you good!" ..........what a load of old arse!

Being supported by someone who loves or cares for you when you are terrified, emotionally devastated and at your wit's end does you good! Having the courage to let all that emotion break free and rid yourself of it, also does you good. In addition a cuddle and a couple of diazipam afterwards whilst talking through the fears, worries and anxieties also works bloody wonders!

As painful as it was for me too see Kayla like that (am I selfish?) I feel she needed to release the pressure and she has benefited from it and boy do I respect that woman for doing it.

Our family and in particular myself, her Mum and Sister, all carers in our own way, are also under immense pressure, how should we deal with it? I cannot comment for anyone but myself. I respect anyone (especially a man), who has the courage to cry and expose their emotions. Maybe not to the extent of Michael Barrymore on Big Brother though. However, for some reason crying is not for me.

I myself have been using the "British Nuclear Fuels Limited" technique of managing my own anxiety, worries and pressure.

The BNFL method is quite simple....... I discuss them with Kayla and once out in the open I seal the emotions in an impervious substance dig a huge deep hole inside myself and deposit the nasties in there for ever. Its worked in the Lake District for years without any major problems......... Except the odd one eyed self cooking sheep or twelve.

Bottom line is, everyone on this journey has his or her own troubles and baggage to carry and everyone deals with it in their own particular way. One thing that has eased both Kayla's and my own pressure is communication. We have never had such open lines of communication and have never been so brutally honest with each other. So out of this horrible cancer journey that we are on many positive things can and do come out of it.

I will explain in later episodes of how our relationship has become stronger during our travels down the "Long Hard Road.

A Tale of Three "Oscopies"

The big day came, off to London again. This time we had to be there for 2pm. "Super Glenda" a very good friend of ours and the Mrs fix-it of our transport problems during the last year, offered once again, to transport us to our latest destination. (Big thanx Super-G)

Kayla arrived at the RM on the afternoon of the 24th very anxious and worried about the medical procedures that were going to carry out. The ward staff soon had her settling in and calming down (the 2 diazipam I slipped her also helped). Next the team visited and told her exactly what they were going to do in graphic detail. Kayla, the brave bunny and well read medical mind that she is asked many technical questions. I sat in the corner trying not to faint and make a total arse of myself!

The anesthetist visited next, fur coat, scarf, handbag ever sooooo Knightsbridge/Kensington. Casually she asked Kayla, "how long have you had the heart problem?" HEART PROBLEM!!!! WHAT HEART PROBLEM????? The Pre-Op ECG showed Kayla had some sort of abnormality! A problem commonly found in "Old Folks". It manifests itself with symptoms such as breathlessness, the inability to climb stairs or walk far and vacuum cleaner operation disfunctionality. Gulp! she has been displaying the VCO disfunctionality since I met her the ECG must be right! In addition you develop an enlarged heart! Big hearted as my wife is this was getting ridiculous. A second ECG was ordered and an Xray to check the vastness of her heart.

Kayla was not happy about this, today of all days she was not nauseous and was quite peckish! To add insult to injury we were about to go out and have have a Chinese meal!!!! That's my Kayla more interested in a meal than an enlarged triple sized heart problem. She was soon smiling again as the on-call Radiologist was in her words "mighty fine eye candy!!!" fresh from the gym lean, mean and a little sweaty! (not my type!!! or preferred gender)

We had a nice meal if a little subdued and headed back to the RM. I invited Kayla back to my £38/night hospitalshoebox accommodationnn for coffee and a cuddle. She declined my offer and we headed back to her en-suite, single room with TV and fridge. I tucked her in and stroked her face and hair until she fell asleep.

She was first on the list in the morning (Due to her latex allergy). I had an anxious sleepless night, Kayla had a sleeping tablet and slept like a log. I gave her a quick phone call at 7:30am to say I Love You, I then got on with some Olympic standard worrying and fretting.

Everything went well, alaproscopyy, a cystoscopy, and a sigmoidoscopy meant that her female body cavities had a BBC film crew inserted and the interior inspected, surveyed and sampled. In addition to the plethora of tissue samples taken the team removed lots of adhesions caused by previous surgery....OUCH. I was a brave boy and did not faint when the Onc Nurse described each procedure to me in gory detail. Kayla didn't get back to the ward until 13:45 by this time I had wrung my hands so much I developed RSI!!! and had seriously damaged the tiled floor with my incessant pacing! She seemed very groggy and I assumed had suffered acute nausea. I arrived at the previous conclusions because she was no longer nagging or bossing me and there was sick on the pillow and in her hair!!! Eeeewwwwwww!

She soon perked up and as a special treat showed me her three newlaproscopyy holes in her tummy (oh the joy!) Not one for feeling sorry for herself, she was soon up and trotting about demanding the removal of the catheter andintravenouss lines whilst munching on a malted milk biscuit. Amazing, this woman is amazing. She ate supper, took a peepeee and entertained her acutely worried Mother and Sister. "Shabba" the Sister-Mother of Kayla (Sister-Mother = younger Sister with deluded personality trait whereby they assume a motherly figure even to Mother let alone big Sister!!) had arrived! "Shabba" the "Queen of Hygiene", the protector of the latex allergy, the "eagle eyed" auditor of clinical practices, and above all the CEO of worrying. She is the only person that can make my Olympic Standard worrying look pathetic in the extreme.

The Onc team returned later and told us that everything went as planned, with the "pathology" results on the manybiopsiess taken will be available on Monday. Providing the biopsy results are negative, surgery will be planned for early Feb. At this point in time the bladder will have to go, but good news, the bowel looks as if it will stay to fight another day.

weirdd bit is, the second ECG confirmed that Kayla does indeed have a heart abnormality! Can't remember the exact name (big word very medical a something .. something ..Somethingg .. block?) as there are no symptoms apparent at this time (except for the house work disfunctionality) there is nothing to worry about, but she will be seeing a cardiologist after this adventure ends.

Surgery over, Kayla felt bruised, battered and finally sleepy, "Its like I've been hit by a train, not a little sprinter, no, a bloody big American double decker one! she deftly put it, as I asked her how she felt. I slept much better that night.

Thursday time to leave. They must have thought Kayla had been just too brave during the last few days because just as we were leaving the ward a message came in that she had to go up to the Ultrasound Suite for a Lymph Node scan. One node took theirinterestt, so using a needle they drained fluid from it!!!

Kayla now has in total eight new holes made in her body and has flashed her nether regions to about a dozen strange men! We are back to see the urologist next week and to get the pathology results and we will see the Onc team the week after to plan surgery.

She is tired, sore, but glad to be home and still positive. She will now rest, surf and mentally prepare herself for the next chapter of her epic voyage!

P.S They took Kayla straight into the theatre (coz of the latex allergy) fully awake and with no pre-med. She found it really weird, the last thing she saw before being knocked out was a message on a whiteboard in front of her that read

"The limb has been put in the mortuary"!!!!!!!!

The First Visit.......

Kayla's first appointment with the new Onc team was scheduled for 10am on the 19th of Jan. A very civilized time, one may think, not to early not too late.

However, have you ever tried getting into central London in the morning? and the parking! Some of Kayla's web-friends from Jo's Trust (check out the link) normally park at Richmond and get the tube in, then its a 5 minute walk to the RM.

Kayla was fresh out of hospital and had ate only about the equivalent of 3 malted milk biscuits during the last fortnight? Green at the gills was an undertatement of immense proportions. She was barely well enough for this meeting let alone the tube and a tube full of commuters!!!!! Eeeewwww!

No she would need door to door transport and a sturdy arm to hold onto when she got there.

So by car it was. One problem solved another reared its ugly head. How could I drop her at the hospital door, escort her in and park the car? It's just not possible, especially on the Fulham road, you even indicate to pull over and at least a dozen horns blair out at you!

Lets now introduce some other main characters you will meet on this "The Long Hard Road......". Step forward "MJ" (Mummy Janet - Kayla's Mum) and "DD" (Daddy Dave - Kayla's Step Father) They volunteered to take us on the initial visit to this new and scary place!

We left at 7am on a mild winters morning. "MJ" as per normal, had packed enough food to feed a small but hungry army. The Tom-Tom navigated us there in a most respectful time of just over 2 hours! Not bad for just under 30 miles!!!!!

What a place! Talk about a warm fuzzy feeling in the old tummy, it's like no other NHS Hospital that I have ever been in. Kayla was soon registered and tea and biscuits in hand (malted milk her staple diet) we awaited the appointment with the new consultant.

This was soon underway and we met the team and discussed the way ahead. The thing that struck me most, was the level of thoroughness. Before this "heavy duty surgery" would be attempted, no stone would be left unturned to ensure that surgery was the right course of action for my wife. The second thing that struck me was the urgency, if surgery was going to be the option then it would happen within a matter of weeks. Kayla was booked in for the following week for an investigative Pelvic Laparoscopy, another EUA and a couple of other "oscopies" that to spare her blushing I will not describe further. She was then seen by the Pre-Op team and we left after 2pm and coughing up £16 in parking charges!!!

The initial Royal Marsden overall experience although amazing (cleanliness, corporate image, professionalism, clinical excellence, dedication, happy-helpful and focused staff, etc...etc) also had a more serious side. This hospital has a sole function of waging war on a serious disease, cancer. Every patient there had the same hopes and fears and anxieties as Kayla. They were fellow travelers on this the "long hard road", some in front of her some behind. I found it a profoundly humbling experience.

The Story So Far.............

In September of 2004 Michaela (aka "Kayla") my "foxy minx" of a wife, was diagnosed with cervical cancer. At the moment the news was broken to us our lives changed forever.

Initially, your safe, normal and even at times boring, little world just comes crashing in on you and is snatched away. Helplessness, numbness, shock, horror, denial, anger, confusion, panic, more panic, regret and terror are but a few emotions that explode and rip through your mind and body with uncontrollable intensity, and I am just speaking as the husband! Here is a brief time line from then until now.

Sit down ......Strap in....... This is a roller-coaster ride to hell and back .......And back to hell and back............ And so on.....................

Stu

• Sep 2004 - Received Diagnosis.
• Oct 2004 - Referred to women's Center John Radcliffe Oxford.
• Oct 2004 - Staging MRI - Bulky Tumour 5cm Stage 1B2.
• Nov 2004 - Radical Hysterectomy (Operation failed due to Bladder/Uterus adhesion. Ovaries and 11 Lymph Nodes removed)
• Nov 2004 - 2 Lymph Nodes found positive.
• Dec 2004 - Chemotherapy begins (Planned for 8 weekly sessions)
• Jan 2005 - Combined Chemo/Radiotherapy begins (Kayla soon starts to feel side-effects of daily radiotherapy)
• Feb 2005 - Combined therapy ends (Kayla is very ill has 2 blood transfusions and is unable to receive last 2 Chemo sessions)
• Feb 2005 - Selectron Treatment 36 hours (The final insult!!!)
• Mar 2005 - Treatment over.........let the recovery begin!
• May 2005 - Follow up MRI - Great response to treatment anomaly now only 1cm2 reduced from 26cm2.
• August 2005 - Follow up MRI - No evidence of disease!!!!!
• Oct 2005 - Some pain and some bleeding, concerned appointment made EUA planned.
• Nov 2005 - Stu leaves for the Falkland Islands (4 Months detachment with the RAF)
• Nov 2005 - EUA, biopsy taken of suspicious area of necrotic tissue not at original tumour site.
• Nov 2005 - Biopsy confirms recurrence of cancer.
• Dec 2005 - Stu returns from Falkland Islands.
• Dec 2005 - Investigative MRI - confirms new tumour.
• Dec 2005 - Increasing acute pain requires daily morphine medication.
• Dec 2005 - Kayla develops aggressive infection at the site of the biopsy.
• Jan 2005 - PET Scan - reveals 2cm tumour within the "Pouch of Douglas" no other bodily spread disease still confined to pelvic region.
• Jan 2006 - Emergency admission to hospital - infection controlled.
• Jan 2006 - Treatment plan is extensive and radical pelvic surgery (providing there is no evidence of spread beyond the pelvic area) Kayla referred from Oxford to the Royal Marsden Hospital London.
• Jan 2006 - Case transferred to Royal Marsden - initial visit 19/01/06.

Kayla was only discharged from hospital on the 18th of January, the very day before her initial meeting with her new Onc team. So tired, still in pain and as nauseous as "pukey" the very sick Parrot, she headed off to London, to the cancer flagship of Europe the Royal Marsden Hospital (The one on Fulham Road.......yea.... thats right....... the one with no parking!!!)