Race For Life

It's hubby on the blog again, and I'm here to ask for your help. On Saturday June 6th, a colleague from work, will be running the Race for Life to raise money for Cancer Research UK.

Her name is Laura Sargent, and she'll be running Swindon's Race for Life event. Her aim is to raise £500, and she's already a quarter of the way there. Please help Laura reach her target, it's easy to do and, what's more, as it's all done online, you can leave a comment, or the name of a person you want remembered and Laura will write it on a T-shirt she'll be wearing specially for this run.

You can also follow Laura's blog, A Race Worth Running.

Thank you
Franco & Gail

Week 2 - Day 6

Gail was already dressed and ready to go when I showed up on the ward at 11am. Only a couple more things to do before we returned home... To take out the PICC line that runs from her arm to her heart, and to collect a take-out bag of drugs. With one deft stroke, the nurse had pulled a long thin blue line out from Gail's arm like a magician pulling handkerchiefs from his mouth. I was expecting the line to be covered in blood. But I could hardly detect a smear. How did she do that? Magic indeed. Gail was asked to lie still on her bed for fifteen minutes before getting up. Time enough for her blood to coagulate and properly seal the hole that was the line entrance. In that fifteen minutes the drugs had arrived. The nurses knew that we had a long journey ahead of us, so they made sure we wouldn't have to delay our departure waiting for the drugs – about half a dozen different kinds. And, rather than following the usual process of going through patient discharge, we would be allowed to leave straightaway.

There was one more test, however, that Gail had to pass before she was allowed to make her exit. The many litres of fluid that had drenched her system over the past week, had inflated her body terribly. It's a normal reaction. In Gail's case, the fluid mostly settled in her arms, tummy, hips and in particular, in her legs. Her legs above the knee soaked up more of the excess fluid than anywhere else, her skin there was taught and hard like a drum. The skin on her shins was stretched over the tibia like tight, shining cling film wrapping. Her ankles were double the size and felt like they were about to burst with the pressure. All this makes any movement like bending her legs at the knees, moving her feet, sitting up and down, even just standing, quite difficult as there's hardly any elasticity left in her skin.

So, the final test was, the weigh-in. She needed to weigh less than her allowed maximum weight before she could safely leave to go home. (The maximum weight should be no more than 15% above the weight you were at the start of the week's treatment. The weight gain is caused by the fluids that accumulate in the system). Thankfully, she weighed in at one kilo under that maximum figure. A woman's prerogative prevents me from telling you the actual weight. ; )

So, now we were good to go. Carefully, I escorted Gail down the long corridor, down three floors in the lift and out of the hospital into a bright but cold blowy day. I'd brought the car round to the hospital entrance, eased her into the seat, got her comfy with a cushion, then set off on the three hour long journey back to our home.

As we were driving out of Manchester and onto the motorway, Gail suddenly announced that she really fancied a Burger King. Nothing too fancy, just a Whopper... No cheese, no toppings, no chips – just a little green salad. But, it had to be a Burger King. In all the time I've been with Gail, I never knew she had a preference for any burger over another. I can't even remember the last time we had a burger from Burger King. Thankfully, and coincidentally, a service station with a Burger King outlet was just up ahead. I pulled in and left Gail dozing in the car while I got her the burger.

Now to put this into sharper perspective, Gail rarely eats beef, let alone a beef burger. Her diet has been almost completely vegetarian since she was diagnosed with cancer. She has researched and learned what foods, supplements and drinks would help her in her fight to beat her cancer. And she has been sticking by it religiously. Beef was never on the menu.

I got back to the car and as I climbed in, Gail was going on about a loaf of bread on top of the dashboard that was blocking the windscreen. She said there was also a loaf (shaped like a tray!) on her lap. She went on to say that dry crusts of bread were being thrown at her, or dropped on her, hitting her on her wrists. All this happened while I was away getting her burger. However, now that I was back in the car, she soon realised that she didn't see what she'd thought she'd seen. In fact, she was now exhibiting the one classic HDIL-2 side effect that she'd managed to dodge, up till now – hallucinations. By the way, she told me later that it was French bread; bits of crusty French baguette that were being thrown at her, and a rustic style crusty bread (again French - don't know how she could tell) on the dashboard and on her lap...

I found out later, on the journey home, that she'd had a couple of other hallucinations yesterday. I was sitting next to her as usual, writing the blog, it was sometime in the early evening. Suddenly she said "Franco, it's Gianni, on the phone." "Sorry?" I said. My phone wasn't ringing, I wasn't on the phone. I thought Gail was asleep, and perhaps she was dreaming. But then she replied to me, "Gianni! Have you spoken to Gianni? He's on the phone." I reassured her that everything was OK. She must be a bit delirious with all the drugs, I thought.

However, Gail wasn't dreaming, nor delirious. She told me in the car, that she was awake when she was telling me that my brother, Gianni, was trying to get hold of me. Another sign that she was experiencing hallucinations was that she was seeing faces and people in everything surrounding her in her ward. Ghoulish faces, weird faces, people standing near her bed then gone with the next blink of her eyes. These moments of hallucinations, or thinking you're hearing conversations are not prolonged, but they had proved a little unsettling for Gail.

We're home now. The first cycle of HDIL-2 is over, and Gail will now wait two months for the CT scan that will determine if this intensive, short-sharp-shock type treatment, that she herself has chosen to put herself through, has had any effect on her cancer.

And finally...
Gail wanted me to express a couple of things in wrapping up this blog. Firstly, she wants to say a huge and heart-felt thank you to the amazing, caring nurses and doctors at the Christie. The nurses' kindness and compassion has been of great comfort and reassurance to Gail. Whatever they're faced with during the care of their patients, their desire to help and always be on hand together with their positive and sunny disposition has been nothing short of inspiring. Gail can't thank those angels enough.

And secondly she wanted me to say another huge thank you to everyone who has been reading this blog (over 2,700 hits so far). Thank you to all who left comments or sent emails. We read them all. When Gail was feeling low and finding it difficult to tough it out, your words of encouragement would give a tremendous boost to her morale and really helped to keep her on track. Thank you to all who have given in other ways, your generosity has been amazing. And a massive thank you to our daughters whose courage and self-reliance meant we were able to leave them, confident that they were going to be just fine. And thank you to our parents without whose help, we couldn't have done it.

And thank you from me, too, for sticking with me over the last couple of weeks.



Dates for your diary:
3rd July for Gail's CT scan. The result is given on the same day as the scan.
9th July for the start of cycle 2 of HDIL-2 treatment.

Links for further reading:
» Christie Hospital
» Kidney Cancer UK
» Penny Brohn Cancer Care
» James Whale Fund
» NHS - Kidney Cancer
» Cancer Active - Kidney Cancer
» Kidney Cancer USA

Week 2 - Day 5

TFI Friday! I think I know what that really means now.

Gail's tough assignment is coming to its end – for this first cycle of HDIL-2 treatment, anyway.

Consider what is meant by an endurance activity. You know that to complete it requires something special. The dictionary definition of endurance is "bearing hardship; the fact or power of suffering an unpleasant or difficult process or situation without giving way".

It means that to get to the end of a particularly difficult and challenging task, project or endeavour, it demands stamina, determination and guts to achieve that end. Sometimes a little luck is needed to help you along your way. But there are occasions when the difference between making it or not, is down to your heart. The size of your heart. And to me, Gail's has a huge heart.

Through this toughest of regimes, she has always remained positive, always the model patient never complaining, not waivering from her mission to give all she can to her cause.

I sat with her today from the start of IL-2 dose number seven's journey. I watched the clear fluid trickling down the transparent tube and into her blood. I witnessed the contorting rigors take over Gail's bloated body. I helped bring her temperature down with a flannel repeatedly cooled under a cold water tap and applied to arms, legs, feet, and brow. I wetted her mouth with ice cold water through a straw. I gave her reassuring caresses and held her hand when she was able to hold mine. I wish I could do more.

The nurses have been working hard to keep ahead of Gail's busy drug administration schedule. A smorgasbord of tablets and liquids to control her temperature, pain killers, anti-sickness, antibiotic, anti-histamine, and antacids. Drugs to control Gail's back pain, another to ease the nerve pain caused directly by IL-2, and of course, IL-2 itself.

A word for the nurses. They are angels. They do everything they can to ensure their patients are attended to, cared for and kept as comfortable as can be. They are exceptionally devoted to their work. That is always in evidence.

As Gail was showing a good recovery from her final dose, she was granted her wish. She was detached from her drip-feed lines and allowed the luxury of a bath. When she got back from her soak, an angel told Gail that she'd put fresh sheets on her bed. It was 9pm... She was at the end of her shift! She bade us a goodnight and wished us well before she left to go home. She's getting married at the end of May. We wish her every happiness. She so deserves it.

Gail deserves every happiness too. She so deserves it.

Week 2 - Day 4

What a test of endurance this has been for Gail, it's Thursday evening and she is worn out. Just one day to go she tells herself, then on Saturday it'll be all over for a couple of months, and we can go home – all being well. But Saturday still feels a long way off for Gail.

At ten o'clock this morning she had her sixth shot of IL-2. As we know, the treatment schedule the patient is required to keep to, is to have the IL-2 doses at eight hourly intervals. At six o'clock, then, it would be time for IL-2 number seven. The results of the hourly observations, however, were not following that timetable. Gail still wasn't ready for the next dose. Her temperature hadn't dropped down far enough and oddly, her heartbeat was racing at over 100bpm. But that isn't the entire story. What the obs' (observations) don't tell you is how tired you are. Nor can it say how poorly you're feeling.

She feels totally depleted. And at this moment she feels she couldn't face another bout of the rigors whilst she's at such a low ebb. She can't manage another dose. Not now; in reality, not even today.

At eight o'clock this evening, the obs' showed things had improved slightly, but even before the ward nurse had begun to ask Gail how she felt about going for dose number seven, Gail had already made up her mind. She promised the nurse that she'd resume IL-2 tomorrow morning. But she was firm in her desire to explain to the nurse that all she wanted was a chance to get over the diarrhoea she'd had since the day before, to rest her bruised and aching muscles, to allow the fitful episodes of the shakes, echos from the awful rigors, to fully subside. She wanted her temperature to be totally under control. She wanted to feel better, stronger. Gail was listening to her instinct, heeding the signs her body was manifesting.

Her engorged, fluid laden body has been itching terribly and her skin dry, flakey and sore. And following yesterday's concerns around her systolic blood pressure, today the new concern has been her weight gain. Gail is weighed every morning. It's a good way to check on how much fluid has been retained by her body. Since her arrival on ward at the start of the week she has put on 10kg – that's all in fluids. If the weight gain figure goes over 15% of your normal weight, the administration of IL-2 will be put on hold – even stopped, unless your body can release some of the excess fluid. Gail's weight gain is at a crucial point. It's borderline.

The irony is that Gail has hardly eaten anything this week; she has lost her appetite, but to make matters worse, what food she does try to eat stings inside her mouth and lips. Watermelon is good, though. I brought Gail a little fruit salad consisting just of melon pieces, honeydew, cantaloup,  and watermelon. Watermelon worked best because not only did it have no adverse effect, but it was soft, melting in the mouth and cooling. My task tomorrow morning is to see if anyone it selling watermelon anywhere. Could be a tall order as it's out of season.

So, the plan is to continue with dose seven at 8am tomorrow. And the hope is that Gail can catch up on some restful sleep in readiness for, what may well be, the last of these demanding encounters with IL-2 for this week, and for the next two months.

Week 2 - Day 3

Eleven o'clock last night Gail would have been due for dose four. The hour came and slipped away, and night gave way to day. Over twelve hours had elapsed since the previous dose. The registrar paid Gail a special visit first thing in the morning. Routine checks were made, but there was nothing else to do but to wait until that the systolic blood pressure was up and over 90. At last, at around midday today Gail's body was ready to accept the fourth dose of IL-2.

The observations are done on an hourly basis to check that Gail is coping and is OK, but they're also a signal as to when it's safe to go ahead and give the next dose of Interleukin-2. The concern over the last 24 hours was that Gail wasn't passing any water. Or hardly any. The fluids that have been flowing into her through the PICC line, and the fluids that she's been drinking, would, as you'd expect, be making their way through her system. But nothing much had been flushing out the other end. This meant that, put simply, the fluids were being diverted to the wrong places. The worst of the wrong places would be if the fluid was collecting in the lungs. Fluid could even drain to the heart causing it to swell. Not sure about the accuracy of my description of this, but you get the idea. It's bad.

Actually, there was a suggestion that the missing fluid had probably been backing up inside her intestine, swelling it enough to slow her normal bodily functions. She hadn't been to the toilet in two days. Then when eventually she did sometime mid morning, the floodgates opened... Soon after, her observations showed she was rapidly returning to normal. So, there's something we can all take away from that experience.

Dose four went in at 12:30pm. Sometime in between that, and the onset of the rigors two hours later, Gail had a manicure and a hand massage. Yesterday, she'd had a long and soothing foot massage. Volunteer complementary therapists come round the wards every week and offer their services to any inpatient that might like to receive them, and it's free. That offer even extends to a patient's carer – like me. I wouldn't be offered a treatment on the ward, I'd have to make the journey to the rehabilitation centre on the ground floor for my half hour of pampering. The patients just have to say yes and the volunteer therapists come to your bedside and do their magic.

It is a welcome, nurturing treat that none of the inpatients miss out on – the carers have been less likely to take up on this worthy service, though. Perhaps the restricted access to the therapists – only on specific days, and between certain hours, is too much bother for some people.

Not me. I bothered. I went during Gail's first week of treatment. When I arrived at rehab I was introduced to a tall, stately man in his seventies. With a quiet, broken voice he told me he was a reflexologist. And what an amazing practitioner he was. On his request, I'm back to see him tomorrow for a follow up treatment. I cannot wait!

The inpatients and visiting outpatients to the Christie hospital all have one aspect of their lives they share. They all have, or are living with cancer. Christie is the largest hospital of its kind in Europe. It is a centre of excellence, and involved in cutting edge research, treatments and therapies. There's an openness and kindness of spirit here. As a patient, not only do you know you're in the best place, but you feel it too.

The staff embody an incredible combination of serious professionalism and sincere care.

You chat with any of the nurses and they tell you that Christie is a brilliant place to work. Some have worked in other hospitals and have never been so happy as when they started working here. People come from far and wide to be treated here and it is clear why.

Christie's forward thinking approach to their specialist care is epitomised by their readiness to embrace complementary therapies, and the fact that these therapies are volunteered by some fantastic practitioners pays tribute to their reciprocal relationship of giving care to anyone who walks through their doors. Gail is definitely in the right place. She feels it with the wonderful care she receives, literally, around the clock. Whatever the outcome, we both know we couldn't have done anymore to give my darling Gail the best shot at a prolonged remission and the possibility of a good quality of life. We hope and we pray.

Week 2 - Day 2

3:50am I was woken by the buzz of my phone on the bedside cabinet, it was a text message from Gail. "1st one was rough ride". Text went on... "Dose number 2 in at 3:15".  I texted back "Good luck with dose 2. Is back holding out? Birds already singing. Want you next to me. x". There was no reply to my text, no word on the rigors, no comment about her back.

Her back had been a real concern before arriving in Manchester yesterday. Last Monday, the day we got back from the first week on HDIL-2, a muscle in her lower back went into spasm. She was trying to get up off the sofa when she was frozen by the seizure. Her pain was excruciating.

Pain-killing drugs were on the breakfast, lunch and dinner menus. Together with some excellent therapies, chiropractic, massage and a gratefully accepted gift of craniosacral osteopathy from a friend and neighbour, Gail was carefully inching her way back to some kind of fitness in preparation for her second week on HDIL-2, taking every precaution, not wanting to aggravate that tentatively tamed back muscle.

So, at four o'clock in the morning, birdsong intensifying, I concluded that with no mention of any back pain or the rigors, she must be coping. At some point, I fell asleep.

8:48am: the buzz of a text message stirs me from my slumber. "8:45 + no rigors after 2 doses. Feel a bit weird. v little sleep. Hope u r rested. X love u".

I sprang out of bed, and got the coffee on the stove. I was suddenly feeling optimistic. Along the length of this unmapped road we've been travelling along since Gail was diagnosed with cancer, we have always remained optimistic, in a genuine way. We're always looking forward. The past and its failures no longer corrode our outlook. Gail's cancer has been a revolution in our lives. I'd even say it has been life-affirming. And I don't believe that feeling will ever change. The HDIL-2 treatment did, however, put our resolve to the test. I'd been empathising with Gail's buckling back pain and couldn't begin to imagine how she'd cope with the fitting convulsions of the rigors. But her partially restored body (and mind) was somehow defying the odds, and denying the rigors.

Text message received at 9:37am: The Prof had been to visit Gail to give her news about the ECG and lung x-ray she had done yesterday. "Everything fine" said the text. Apparently, Prof was untroubled about her heart. Her lungs, too were clear i.e. no infections, so all good there... Apart from the lung metastases, of course – we'll know whether IL-2 has begun to do its work on those gate-crashers in a couple of months time when Gail has her CT scan.

So I travelled the two miles to the hospital feeling buoyed by the news so far. Gail was still waiting for dose number three when I arrived on the ward at 2pm. She was asleep, but she wasn't far enough gone that she didn't hear my movements nearby. She woke and looked to see who it was, then she beamed at me. How does she do that? With everything she's going through, how can she smile so happily at me? Well, I know that I'm always smiling at her. Perhaps we're each other's mirror.

I noticed a 50ml bag of fluid on the windowsill as I rounded the bed to sit on my arm chair – it was IL-2 dose number three, sealed in it's protective bag, waiting in the wings. Waiting for Gail's blood pressure to stabilise. It was still too low. But by 3pm, Gail's blood pressure had recovered enough - 92/52. Finally, dose three could be unpacked and plumbed in. Might the rigors make a tentative appearance this time? Previous non-showings should not be taken into account. You might think it'll be OK, but the plot in the IL-2 story centres around the 'cumulative effect'. Well I had the ring-side seat and would be on hand if, this time, the rigors were to make a dramatic entrance.

And sure enough, they did. At about 5:30pm Gail started to shiver, her teeth began to chatter, her legs and arms shaking under the covers. I draped her throw over the hospital issue bedding for extra warmth. Her temperature is rocketing but until she starts to feel the heat we need to keep her warm.

Gail has already pressed the buzzer that alerts the nurses to her need of attention... it has been buzzing away down the corridor for several minutes, now; and with every minute that passes, the rigors will vex her straining body more. But the nurses need about 15 minutes for the process required to administer pethidine, the drug that Gail needs to help calm her quaking body. That's because this particular drug contains morphene. That puts it into the category of drugs that require two nurses together to sign for its use. Then, the key for the locker containing these protected drugs has to be retrieved from someone/somewhere. Then, both nurses have to be present while one reads the name and number on the identity band on Gail's shaking wrist, while the other nurse checks the details off on a form. Then, without further hesitation, the drug gets pushed  directly into the same line that all the other drugs get fed through – and straight into her heart.

Gail's neck arches back, short catches of breath, she throws her head side to side, her entire body stiffening and jarring, bouncing off the bed, electrified. "I'm trying to relax" she stutters through chattering teeth, then moans, "I can't take control" But then, within about five minutes, the pethidine takes over, pulling back the reins on the stampede. Gail's breathing restores to a sedate rhythm, her body settles back into the bed, sleep overrides the senses.

That wasn't quite the end of it, though. Gail needed another shot of pethidine only 15 minutes later. Same, procedure as before with the two nurses. But more worryingly, the same pattern as in the last day or so of week one, when the rigors made a swift come-back and then, as now, the pethidine dosage had to be doubled.

Only a sheet covers Gail as she sleeps, and the windows are open drawing a pleasantly cooling breeze across her corner of the room. The air smells reassuringly fresh and watery. I sit by Gail and wait for her to come round. It'll be about an hour. In the meantime, the ward has been inundated with visitors. Where there's people, there's noise. Chair legs screeching as they're dragged across the squeaky clean floor; plastic carrier bags rustle like there's creatures trying to get out, but it's hands trying to get in, searching around for something that's actually been forgotten; children whining; parents shushing them; the volume knob of the many voices competing to be heard is turning up, airspace filling with noise... But Gail's sleeping through it all!

When she eventually wakes, she looks around, I spot her movement, she stretches her arm out to me and searches for my hand. Fingers clasp together, and she smiles at me. "Hello" she says. Then after a momentary pause, "Number four." She's looking at the clock mounted high on a wall to our right and counting eight hours starting at three. "That'll be around eleven o'clock tonight!"