Results from first cycle of HDIL-2

The first cycle of Gail's HDIL-2 treatment ended two months ago, on May 5th.

On Wednesday, June 27th, one week earlier than had been planned, we were up in Manchester for Gail's first scan following HDIL-2 treatment.

About a week before then, Gail wrote an email to the Prof describing lumps behind her operation scars that were seeming to be getting larger by the day, and they were causing her increased discomfort. Within two hours of sending that email, Gail had a reply from the Prof himself – at 10:30 in the evening! He suggested that Gail should come up to the Christie to be scanned at the earliest opportunity. An appointment was set for the 27th.

Today, it's Monday July 9th, ten days after the scan. Today is also the day that Gail would have begun her second cycle on HDIL-2 – this most gruelling and uncompromising treatment. The good news is, however, that she won't be facing this tough challenge today. In fact, we won't be returning to the Christie Hospital in Manchester because Gail has been discharged from the care of the Professor and his team. Her scan revealed that her lung metastases (mets) have not reduced in size as we were all hoping, and to be honest, following all the positive indications from her blood tests and her response during treatment, we'd even dared to believe would happen. But positive indications are no substitute for straight talking fact.

The news is that the lung mets have grown in size since her previous baseline scan back in April. There's only one conclusion that can be drawn from these results... HDIL-2 hasn't worked for Gail. Not one bit. To compound our disappointment, new tumors have been detected around the site of her nephrectomy... Those are the lumps that Gail wrote to the Prof about, and that had obviously concerned him enough to bring the scan forward.

When we arrived at the Christie's for that scan on June 27th, we were informed by the receptionist in the CT scanning department that there had been a fire in the generator room that had taken out the power for some of the scanners, including the CT scanner that Gail was booked on. Inevitably, this would mean delays. The receptionist encouraged us to get a cup of tea or have a wander, and to await her call. She had Gail's mobile number and she'd call us as soon as everything was back online. To be fair, the delay wasn't as long as we were fearing. About an hour behind schedule, Gail was called in to start drinking the iodine highlighter liquid. An hour later at 12:15, she was called through to be scanned and by 13:00 she was out. Now all we had to do was wait for the results. We were reassured that it wouldn't take too long – but time enough to get some lunch. This we did. Meanwhile, Prof and team would be analysing Gail's scan.

Lunch over, we made our way back through the fast-moving corridors towards the Profs consultation room. Some minutes after taking our seats in his waiting area, Prof's clinical assistant emerged from the room. She didn't look towards us straightaway, she seemed distracted – she was talking to herself, but in a way that ensured that everyone in the waiting area knew what she was thinking. She was, we gleaned, searching for unoccupied rooms in the near vicinity. Moments later, with a kind and cheery tone, she asked Gail and me to follow her. She ushered us into an empty room in a quiet corner of that department. The room was small. It didn't have a doctors's examining table, and there was no sink. There were no sterile glove or apron dispensers. There was no blood pressure monitor, no stethoscope, no anatomical charts, no computer screen, no files, no phone. Just three or four chairs, a small table and a window without a view. We weren't kept waiting very long. Just a few minutes, but it was long enough for it to sink in... that we were waiting for Prof in a counselling room. Gail and I hadn't said a word to each other, we were just sat quietly waiting, holding hands, until she broke the silence and, curiously, asked me if I had a gut feeling about the results. I looked at Gail for a few moments wondering how to put it to her; I knew there and then why we were here. I shook my head and told her that I didn't think it was going to be the news that we wanted to hear. She slowly nodded as if pondering on a notion. I knew that she knew it, too. The door swung open and we were suddenly thrust back into the noise of the hospital. I hadn't noticed before just how tall the Prof is, at least six foot one, and in his dark suit he seemed to fill the room with his presence. His assistant followed him in.

As Prof confirmed the news we were expecting, it occurred to me that he was as devastated as we were. And for a moment it seemed that there was a a tacit acknowledgement as to the reason why we all felt this way. It wasn't so much that Gail's cancer had gotten worse, rather, that somehow, HDIL-2 simply hadn't worked, and that the only course of action for Gail now, was to get her onto the drug Sutent... The very same drug that was offered to her by her Cheltenham consultant before she opted to go down the HDIL-2 route. It was like a game of snakes and ladders, we had just landed on the snake's head and slid from somewhere in the middle of the board, all the way back down to square one.

It was two-thirty when we shook hands and said our goodbyes to the Prof. He disappeared into the throng of the mini metropolis that is the Christie while his assistant spoke with us a few more minutes, reassuring us that Sutent could yet prove to be a successful treatment. Gail had pinned her hopes on the Prof and his team. She believed the answers to a successful treatment of her cancer lay at the Christie. She was totally committed to this very difficult route that she herself researched and opted to follow. But, Gail's journey on highway HDIL-2 had hit an indomitable diversion. The map was being redrawn. We were trying to make sense of it, but one thing was clear... It's about-turn and onto Sutent... The drug that Gail was recommended in the first place.

Despite the disappointment of the HDIL-2 treatment not working, Gail has absolutely no regrets about her decision to try this course. It was the right choice at the time. If she'd decided to just go along with 'doctor's orders' and go straight onto Sutent, she would never have been offered the opportunity to give HDIL-2 a go. And then, those "what if...?" questions would have always been there, annoying her at the back of her mind, and she would never have known the answers.

So. It's a new phase. A new drug. Gail's getting her first prescription of Sutent on Wednesday, July 11th. If it's going to work, Gail will know pretty soon because the first thing she should notice is that the pain around the new lumps should subside or even vanish completely. That could happen by the end of the first cycle in four weeks time.

I shall be updating this blog regularly with her progress.

Fund raiser

Our nephew Harry is doing a bike ride for Kidney Cancer UK.

Here's his 'Just Giving' page: http://www.justgiving.com/harry-jarvis. Please read, in his own words, his reasons for doing this challenge and support him if you can.

Thank you.

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.