Monday 9 July 2012

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.






Wednesday 20 June 2012

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.

Monday 14 May 2012

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

Saturday 5 May 2012

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









Friday 4 May 2012

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.





Thursday 3 May 2012

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.



Wednesday 2 May 2012

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!"





Monday 30 April 2012

Week 2 – Day 1

Gail's on the ward, lying on her bed dreaming of our holiday in June. It's a week in a cottage out in the countryside near Dartmouth. The week falls in the middle of the two months break in between treatment cycles. While we're waiting for this second week of treatment in the first cycle to begin, she revisits the Coast and Country website to have another flick through the images – the cozy cottage, its homely interior, its modest garden, its unspoilt views. She's holding on to the thought that, soon, we'll be as far away from here as we can be.

It's already six o'clock, the evening approaching, and she hasn't been administered her first dose of IL-2 as yet. I've been with her all day, much of it spent sitting in the now familiar comfy arm chair next to her bed. But, we're not in the same ward as before.

A week ago Gail was in ward twelve on the top floor, aka the 'penthouse suite' as one cheeky mancunian nurse put it. "We only have VIPs staying in ward twelve" she'd proclaim. It's ward eleven, on the third floor, for Gail this time. Each ward has several bays and several side rooms. Each bay has four beds, the side rooms have just the one bed. The bay that Gail is staying on this week is right down at the end of the corridor.

It would seem that Gail is out on a limb here; it's a long way from everything. But perhaps that has it's advantages. Firstly, it's quieter than it ever was in the VIP lounge upstairs. It's more up-together, too. Fresh, sky blue curtains rather than off-white. The bath isn't directly opposite, so Niagara falls won't be turned on anywhere nearby, half way through the middle of the night. This bay is right at the end of the line, so if you haven't got business down here, you ain't going to be passing by. And that feels like a small piece of luxury already.

Despite the clutter of medical paraphernalia and the occasional bleeping of the drip feeders when their fluids run dry, we serenely while away the hours. It's as if we're in a hotel conservatory reading a magazine, the paper, a book, unconcerned at what our unknowable future holds. We chit-chat about this and that and sometimes search out each others hand for that reassuring squeeze. The sun has swung an almost uninterrupted arc past our window seat view since we arrived on ward eleven nearly eight hours ago. And a little troublingly, IL-2 still hasn't made an appearance... Not that Gail is that eager to see its return.

From our window, we watch scores of airplanes soar into the sky and bank into their trajectory, the destinies of their occupants we can only wonder, while we continue to await the arrival of Gail's first £700, 50ml bag of IL-2 of week two. Gail has made the most of this idle time by fiddling with her new bed's electronic position-adjusting controls, whilst reclining gracefully on her state-of-the-art, air-cushioned and almost imperceptibly oscillating mattress. She didn't have this top gadget on ward 12!

It's now 7:30pm and the holiday's over. Finally, the first bag of IL-2 has already been attached and emptied into Gail's veins. The 50ml dose only takes 15 minutes to drip through. All quiet again right now.

It's so quiet. There's one other inpatient in our bay with a visitor. Their talking is a soporific murmur. Gail's got her iPod headphones in now, listening to a meditation, quietly anticipating IL-2's first aggressive sign of invasion when it charges her body with those crippling rigors.

It's 8:42 (I feel like saying, in a geordie accent, "...in the Big Brother House") in the end bay on ward eleven, it's no goals in the Manchester derby, and it's a no-show from those rigors – so far.

It's now after 10pm... Visiting hours finished two hours ago and I've been hanging on in the hope that I could be here for Gail when she goes through her first rigors. The nurses have been empathetic and have let me stay, but now it seems it could be ages before anything might happen. So, unfortunately, the time has come for me to say goodbye to Gail, and to take my leave.





Monday 23 April 2012

Day Eight..

WE'RE BACK HOME!

Gail was discharged at 2pm today. She did, however, make a rather blatant statement of intent... Knowing the registrar was on her way round at about 12:30 to give her the latest news, Gail was already dressed and packed to leave – by noon! Fortunately for Gail, the registrar was on side, and had a different take on the heart attack, which was the reason behind the extended stay in hospital.

The theory is that Gail had tachycardia, probably caused by hyperventilation. The marker in her blood that suggested she'd had a heart attack was definitely raised high enough to cause real concern for the medics. Enough to take proper precautions. But after a listen to the chest, and a check on the pulses, the sensible and acutely bright young registrar said that Gail was OK to go home.

Sorry about this posting being so late when there wasn't much to report. There was however much to do when we got home. You know that crash back down to earth you get when get back from your holiday... It was a bit, only a bit, like that. What a wonderful relief it is to be back in our home.

I won't be doing anymore posts this week... Oh, I nearly forgot. As Gail's heart seems to be OK, she will be back in for a second week of HDIL-2 treatment starting on Monday 30th April. And I will continue to do my best to keep you all up-to-date (albeit, late into the night).

Thank you to everyone for following the blog. Your comments (and emails from those of you who weren't able to leave a comment on the blog) were a real motivation for me to keep this going and give you the best account that I could, of this first week of HDIL-2 for Gail.

Talk soon.
F

Sunday 22 April 2012

Day Seven..

I didn't expect to be writing the blog from the hospital today. But here I am, sat in my usual place. My armchair tucked in close to the right-hand side of Gail's bed, she's lying on her side facing me, eyes closed, but not asleep.

We managed a couple of walks around the hospital today. For a theraputic change of scenery. Thankfully, this hospital benefits from some really nice variations of scenery. We went to the Conservatory and sat for a few quiet moments. That's something that's so very hard to find in this, and probably every other, hospital. Quiet. This is a very big place, with many dedicated rooms and spaces: The Relaxation Room, The Conservatory, The Chapel. But when there's people in them, there's noise in them. You can't escape it... we emit noise. We're in a massive complex, it's a gated community the size of a small town, so it's not surprising that there's constant noise.

On a typical week day a thousand nurses, doctors, outpatients, relatives, consultants, cleaners, students, inpatients and the Professor, walk through the labyrinth of corridors, waiting rooms, treatment rooms, wards, and other exotic and mystifying rooms. The main corridor linking the two wings of the hospital, aka the Glass Corridor (shown in these pictures), is like walking the pavements of a shopping mall. Today, however, it's Sunday, and unlike 'open-all-hours' shopping malls, there's not much going on here and there's hardly anyone around. So happily, we have found our sanctuary of peace on this sabbath day, in The Conservatory. We're both sitting very quietly, reverently. The peace is broken when Gail reminds me that we haven't got long, she has to have a new bag of fluids attached. Gail's brain might be fogged with tiredness, but she' got her mind's eye on the clock, (it'll take a lot more than HDIL-2 to cloud her near cosmic sense of time) and she beckons us to leave our haven and return to the bustle of the ward.

One of the Prof's registrars came to visit Gail earlier. She explained that no firm decision could be made on when we could go home (Gail's desperate to get home) until cardiology, oncology and renal meet up tomorrow to discuss her case. Prof would have the ultimate say. And that's pretty much it. We don't know if Gail will be returning for her second HDIL-2 cycle in a week's time. And we don't know how long Gail will be asked to remain in hospital. The registrar made a valid point, she said, looking directly at me "We wouldn't want anything to happen to Gail while you're half way down the M5." It worked. I was sold the insurance policy! But Gail, being a lass born up north in Yorkshire cut in and said that she could self-administer the anti-clotting drug Fragmin. "Just give me the drugs," she said, "I can do it myself, I've done it before, and we can get back to the children". Touché! That word 'children' is a good one to use in situations like this. That coupled with her admirable self-dependency... can't argue against that, surely? Well apparently you can. You can't live life without insurance. Fair enough. We await the judgement from the experts in the morning.


Saturday 21 April 2012

Day Six..

Eleven doses. That's it. Gail's done! She's reached the end of what she can physically endure. Dose eleven proved to be the one that crushed Gail's resistance... Not in mind, but in body. This morning at 7am, two hours after administering the eleventh dose of IL-2, a team of doctors and nurses were surrounding Gail's bed struggling to keep her airways open, and calm her shuddering body. The rigors had taken such a violent grip on her that she was gasping for air – they gave her ventolin through an oxygen mask. Her tongue had swollen so much that it was nearly choking her – they administered a liquid drug into her mouth. She had felt a painful tightening in her chest – they wired her up to an ECG; the doctors wanted to be sure she wasn't having a heart attack.

And all this activity while she shook uncontrollably. Pethidine, the drug used to mitigate against this debilitating, muscle wrenching side effect had been gradually losing its effectiveness over the course of the week. By Thursday, they'd actually doubled the dosage to try to counteract its waning influence over the rigors. But this HDIL-2 treatment has a notorious and intimidating reputation for torturing those 'lucky' few people who hope to be beneficiaries of its promise of a lasting remission.

It was part way through the lunch period, when I arrived at Gail's ward. I rounded the corner and I was astonished to see her stood up by her bed, just about hanging on to her drip feed stand. She'd called me a couple of hours earlier on the mobile to tell me about what had happened in the early hours. She sounded awful on phone. She'd had a rotten night dealing with dose number ten, compounded with the disturbance of the hourly observations on her stats, she'd hardly slept. Then at 5am and sleep deprived, the time had come around seemingly ever quicker, to administer 'magic potion' (Gail's pet name for it) number eleven, the dose which brought about the frightening and devastating ambush of the rigors. So, I'd expected her to be away with the fairies when I got there. Instead, there she was, a bit wobbly, seeing herself off to the loo. I couldn't believe that she was attempting to make the trip without a helping hand. I clutched her by the arm and slowly helped her across the ward and over to the toilet.

A nurse was waiting for her when she returned. She had to draw some bloods to run some more tests. Later, we were to discover why.

Gail's been itching for a bath for the last few days, but that luxury can only be granted when her blood pressure returns to normal. The upper figure has to be over 100. That's curious. It only needs to be 90 to be ready for a dose of IL-2! So Gail had to wait. It was another six hours before her bath could be run for her. That was sometime after 7pm, which was only moments after we were told the news. A young male doctor called to see Gail and told her, matter-of-factly, that she had had a minor heart attack during the rigors on dose eleven. The blood test results taken earlier confirmed this, the ECG didn't pick it up at the time. The outcome? Gail's got to remain in hospital for another three days while she receives treatment for it.

Our response..?

It only properly sunk in when we had to tell the kids. And, incredibly, they took the news better than we did; whilst we were worrying about us not being there for them, for yet more days, they texted back words of encouragement back to their mum: "We are looking after everything fine don't you worry about us, you're the best person ever, and Kofi [the dog] misses you he's lost at home without you or dad here he's going to go mental when you're home!!!!!xx" Excuse the lack of punctuation in Iona's (she's 15, our youngest, a typical teenager) text message, but she did well with the apostrophes and spelling.

That simple text message was exactly what Gail needed to hear. It was heart-wrenchingly moving for us. Gail melted, tears rolled down her tired face. It was the first time she'd allowed herself to cry in the whole time she's been here. But the most remarkable thing about that text message is how it has re-focused our resolve. It has been an inspiration, it has filled us with a renewed optimism. What's a minor, treatable, heart attack when you consider that real possibility of an extended remission? Compare that to what we might have had to face if we'd decided not to come to Manchester for this treatment? We know that it'll be another couple of months before we discover whether HDIL-2 has done the job; we're not out of it yet. But we are still, and will firmly remain totally positive about the outcome – the outcome that we want.


Friday 20 April 2012

Day Five..

I arrived a little before official visiting hours started, today. The patient was curled up on her side, asleep. It's really quiet on the ward right now. But then, lunch has already been served and the empties have been cleared away. It's 1:30pm - only half an hour before the 'gates open' to the visiting hoards, who, unlike me, are abiding by the hospital rules waiting until 2pm before descending en masse. So here I am sat on my usual armchair, observing a moment's silence. It's grim outside. Squally showers pre-emptive of the unquiet that's going to drench our tranquil corner.

Gail texted me this morning to tell me that she'd been seen by the Prof's second in command, Andrea, who specialises in the HDIL-2 treatment. So she has seen it all and knows the form. Her reaction to seeing the results from Gail's daily blood tests and hourly stats was nothing short of utter delight. She described her as a double 'A star' patient. Her bloods are as they were on the day before she began her treatment. What a marvel she is!

Reassuring though these praiseful words are, they can have the effect of protecting you from the reality. The HDIL-2 onslaught is taking its toll on Gail's battle-weary body. With every dose, now, she knows what's coming. And the bravery she had in the early stages to declare "bring it on!" has gradually been surrendering to a cringing acceptance that this relentless cycle, nine already completed, is leaving her feeling depleted and sore.

Her body is aching from the violent shaking of the rigors. Her mouth is sensitive and dry and her throat sharp and cutting from the massive swings in temperature, regularly hitting 40C. Her brain is muddled from the disorientating flu-like fevers. And you'd think with this exhausting, grinding routine, her resolve might be waining. Actually, if you know Gail, you'll know her resolve will be the last thing to crack.

Before Gail has her TENTH dose, her stats have to return to acceptable levels, as they do before every dose. The blood pressure in particular has to climb back up from fading lows like 78 over 48 (one of last nights readings – gasp!)  to a minimum of 90 for the upper (systolic) figure. The time it takes for Gail's systolic pressure to recover is taking longer, therefore the time between doses is getting longer. At the beginning it was every eight hours, now it's getting closer to... ten hours! Considering everything, that's still an incredible achievement. To put this into perspective, most people aren't able to reach double-figures by the end of their week stint on HDIL-2, Gail still has one day to go! I apologise if I am gushing about the virtues of my wife. I am so very proud of her.

The blood pressure reading in the picture on the right was the latest one taken at about 7:30 this evening. The upper figure is 98 – well over the minimum of 90... Which means, it's time for dose number ten. A 50ml flush with glucose first, then by about 8:30, Gail will climb into the roller coaster and off for another assault on the body and senses. Interestingly, though, this roller coaster hasn't been a sickening ride for Gail. Not once has she felt sick on this. Many complain of sickness as a major side effect. One other much feared side effect that has mercifully remained elusive for Gail, is the hallucinations.

As the tenth IL-2 bag is about to be suspended on the drip feeder, the time has come for me to say goodnight to Gail and leave the ward. A basic but comfortable hotel room awaits me. A rough and punishing ride awaits my heroine wife. I love her so much.


Thursday 19 April 2012

Day Four..

The Prof called in to see Gail this morning. It was his first visit since she began the treatment. He was genuinely surprised when he noted that she hadn't yet skipped a dose... Six on the bounce. A consultant accompanying the Prof picked up Gail's toothpaste tube that was lying on the top of her personal effects cupboard. She was particularly interested and impressed by Gail's choice because of the natural anti-bacterial properties of the propolis contained in it. This discussion lead onto Gail's favourite subject... She went on to talk about how she's trying to complement her treatment by eating the foods that would be most beneficial to her while she's administered IL-2.

Then, in all seriousness, the Prof suggested that Gail might like to write a guide to help patients through the ordeal of this treatment. Knowing Gail as we all do, we know that she doesn't need a second invitation when it comes to helping others.

Gail's father and brother came to visit today. They were on their way back to Gloucestershire from a working trip in Scotland. And coming to Manchester was only a small detour in their 1,000 mile round trip. It was a welcome visit and one which I think gave them real encouragement on how brilliantly Gail's coping. And this isn't just my observation; another nurse not directly involved with her care had to double-check that Gail was the HDIL-2 patient. She'd seen how well Gail was looking and had begun to wonder if she'd got it wrong. When she checked Gail's Observation Board at the end of her bed, she couldn't believe it.

I might be a bit biased about Gail's amazing ability to deal with this, but now I know that she really is amazing. I sat with her when she had another one of those rigors earlier today. It's tough to watch. Her lips go blue and her fingers are a pale yellow, drained of any colour. She convulses uncontrollably. Until the Pethidine cuts in, she gives way to her body's natural reaction to Interleukin-2 penetrating her core, its receptors programmed to search for its brothers-in-arms, the white blood cells, specifically the T cells, then to instruct this gallant army to differentiate between the good and the evil. With this, now innate, knowledge the T cells give the power to the immune system to seek out and negate the bad guys, while minimising the impact of friendly-fire. Well that's the theory, told in a rather swashbuckling style. I know that the outcome isn't always a perfect ending, but right now I am feeling very optimistic.

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Tonight, I left the hospital comparatively late. The nurses don't seem to mind too much that I'm staying behind well after visiting hours is over. I'd been quietly sat in my armchair right beside my wife, writing the blog. We'd talk about how things were going and I'd listen intently to her account. Although it's always an honest account, it's never a negative one. "I'm here to do a job" she says. And she's going about it in the most professional manner.

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Wednesday 18 April 2012

Day Three..

Hubby reporting... Came back to the ward this morning. I sneaked in at 10:30 and dodged the heavies at the ward's reception desk (visitng starts at 14:00 officially). I turned the corner into Gail's ward and saw her lying motionless, eyes closed. Then, as if she knew I was there, she opened her eyes looking directly at me. Big smiles! A sigh of relief from me.

She had had two HDIL-2 doses since I left yesterday, one last night and one early this morning... And she's still beaming. It's now 3:30pm, and the nurse is here to give Gail her next dose. "Bring it on!" she said when asked if she felt ready for her fourth consecutive dose; all of which now means I'm going to witness Gail going through... the 'rigors'! A rigor is an episode of shaking or exaggerated shivering which can occur with a high fever. It happens about two hours after the dose has been administered. Firstly, you start to feel really cold, then your teeth start to chatter, then your entire body goes into convulsions starting with the legs and arms. Gail said that no matter what you do you can't stop shaking - until the Pethidine starts to take effect. Within 20 minutes, it's all under control; then sleep takes over...

I'm looking at the bag containing the HDIL-2, hanging from the drip feed. It's only 45ml of fluid! Now, I thought it was going to be loads more than that; why? Because of another of the side effects that was described to us... "Fluid will leak through the veins and into the body making you bloat out". Apparently, you can put on loads of weight from the amount of fluid you take onboard.

You see, the HD bit of HDIL-2 actually means High Dose (not High Definition as was my misconception). So when you think high dose you imagine bucket loads of this fluid being poured in through a funnel, but it isn't like that.

So where is all this excess fluid coming from? It isn't from the HDIL-2. It's the saline solution... That bag (in the background) looks like about a litre's worth. Saline is really important as your fluid levels must be kept up. That's because it helps regulate the blood pressure, which tends to drop suddenly at around the same time as when the rigors set in.

I'm getting quite knowledgable in this treatment ; )

It's now 6:30pm, Gail's had a light tea - leak and potato soup followed by a tuna salad. She still has an appetite. I watch her eat; a jumble of fluid filled pipes and taps dangle from her right arm as she tucks into her food. She's doing really well. She doesn't have that grey hospital look that you'd expect either - she looks flushed, like she's just been out in the sun for half an hour. Earlier, a little while after the rigors had died down, nurse came around to check on Gail's vital signs, blood pressure, temperature, pulse rate etc. All were settling down nicely. Then she stopped and took a look at Gail and said "you're looking too well to be going through this treatment." A sentiment I echo.




Tuesday 17 April 2012

Day Two..

It's time for hubby to take over the blog... So here I am. Gail's in, and hooked up, and is in the middle of her first dose of IL-2. I'm writing this from Gail's bedside. She's right next to me and she's still smiling. From where we are - on the 4th (top) floor, and with an enviable spot by the expansive window, we have a great view across the rooftops of Didsbury. The ward is light and airy - we can even open the windows... that's a top perk - believe me!

Gail's half way into her first dose of IL-2, and it's everything as we were when the IL-2 tap was first turned on. She has a little raised temperature, perhaps, and a little aching in her bones, but that could be from all this lying around ; )

Actually, one of her many symptoms will be aching limbs and joints, just like having the flu. She's just been given some tablets to help ease the aches and pains. But she's not in any real discomfort right now.

Early days, I know.

The thing that has struck us both on our first day, is the unbelievable commitment these nurses have to their job. The nurse dedicated to Gail's care is on a 14 hour shift. 14 hours! She started at 7am. That's a long haul to 9pm. Just learned that for 13 of those hours, she's on her feet. Apparently, the secret to achieving this feat? It's all in the shoes she wears.

Next IL-2 dose is at 10pm. Let's see what tomorrow brings.





Monday 16 April 2012

Day One..

Day one, a morning packed full of tests and the all important full body CT scan and results. Not quite as straight forward as I had hoped as when we arrived at 8am, all my details on the system referred to a lady in Manchester who happened to have the same birthday. After many phone calls and computer searching they finally straightened things out. 


However, saw Prof who gave me the all important news that there was no spread- no additional tumours so smiles all round! You always brace yourself for the worst, but nothing had grown further which was such good news. 


Whether my meditations each afternoon and guided imagery were helping, or my very strict diet and alkaline approach had colluded to stop things in their tracks, we will never know, but Franco and I both feel that I am playing my part in my own recovery. 


Well, in order to receive the IL-2 doses, I have to have a PICC line put into my upper arm (a fine tube which is fed through a vein across my chest and into the top of my heart). As the CT scan involved drinking a contrast dye to light up my insides, Prof explained that my first dose of Interluekin would be delayed until Tues am. This was to enable the body to clear the dye. Anyway, went through admissions and up to visit the ward, and much to our delight we were told to come back Tuesday at 8am. It was like we were given the night off! A bonus night of freedom, albeit with PICC line hanging out of my arm!

Sunday 15 April 2012

Saying goodbye

Today was hard leaving behind the girls, everyone trying to be brave but on the inside feeling the wrench of 'Goodbyes'. Drove up the motorway-as busy as ever and arrived in Manchester this evening. Looking forward to our visit to Greens restaurant tonight, knowing that hospital food looms on the horizon.


Main thoughts are about tomorrow's scan and results. Trying hard to get my head straight for what lies ahead. So many people sent good wishes today, a huge 'thanks' to you all. x

Saturday 14 April 2012

Getting ready


Saturday spent getting everything ready. Keeping positive but with an element of fear of the unknown. Leaving Sunday to start Monday. Meeting Prof and having my PICC line in, then off for CT scan to discover how the tumours are and if they have spread, grown or changed. Waiting for results is always hard. Have booked a table at Green's restaurant in Didsbury for Sunday evening. A fantastic veggie restaurant run by celebrity chef Simon Rimmer. Hopefully not a Last Supper!!
Its going to be hard driving away from home and my girls, but like we said today we are all in this together and we each have our part to play.

Friday 13 April 2012

The story so far

Welcome. I've started this blog so that my many friends can be kept up-to-date with the next stage of my battle with kidney cancer.


Here's a quick catch-up...
I was diagnosed with cancer of the kidney in November 2011. After a long ten week wait I had a radical nephrectomy on January 16, 2012. From the histology, the tumor was classed as grade 4 and, at a whopping 10cm, you can imagine how grateful I was that my fabulous surgeon was able to do the op laparoscopically. There is only one thing more shocking than being told you have cancer, and that is being told you have secondaries. My follow up scan 6 weeks later revealed lung mets on both sides with numerous spots. I was advised by my consultant in Cheltenham that I would be prescribed Sutent, a type of chemotherapy, to try to keep it stable. Prognosis? On average they give you a couple of years on it before it becomes ineffectual – then what?


As some of you will know, I've been researching my cancer and the possible treatments available for it with the painstaking meticulousness of a prospector panning for gold. Knowledge is power and when death stares you straight in the face, you would do anything to hang on to life.


Through my research I found two cancer forums, one here in the UK and one in the States. Both offered invaluable info and support and more than anything, the word we all cling to - HOPE.


The treatment everyone on the forums was shouting loudest about was HDIL-2: High-Dose Interleukin-2. A tough treatment done widely in the US but very hard to find in the UK. For some it has even offered long term remission, for others it doesn't work. My research showed a glimmer of hope. I was pointed in the direction of Professor Robert Hawkins, of the Christie Hospital in Manchester (UK) one of our top renal specialists and I fought hard to get a referral up to see him.


The day of my consultation with 'the Prof' (as he is fondly known by his staff and those who have been treated by him), was a glorious cloudless blue. It felt like the first day of summer – in the South of France. It was also the day when I knew that this was my chance to try to regain my life. It just felt right... I knew that, as tough as it sounded, this was the treatment I had to try.


Through this entire process I have discovered I have an indomitable determination to live. I have found reserves of energy and positivity I never thought I had.  So much of this I owe to the incredible support I have been receiving from my family, friends and people I've encountered out-and-about and online. The journey so far has been – both painful and inspirational. I have witnessed the very best of human kindness, and a love and care I thought only existed in dreams.


A phone call Thursday confirmed that I had passed all the stress tests and that my tissue type matched the required profile... So I was offered the one bed that would be allocated for HDIL-2 treatment – starting Monday April 16th. 


This news filled me with excitement, gratitude and dread. I scrambled to book up accommodation for Franco (my husband); organised my daughters to ensure their week 'home alone' would be as straightforward as possible; got the shopping in, and tried to remember everything else that would be needed to ensure 'week one' of treatment in Manchester would go as well as it could.


Back to the treatment, (for the squeemish of you, look away now as I explain what I am about to put myself through). A week as an inpatient receiving 8 hourly doses of HDIL-2 through a PICC line right into my heart. The treatment is known as immunotherapy (or bake, shake and flake – as it's known in the US!). Basically, it's trying to kick start my own immune system into killing the cancer cells. During this time the side effects I can expect are the rigors, fever, flu like aches and pains, nausea, vomiting, hallucinations, skin peeling, headaches, water retention, weight gain, low blood pressure and a risk to both my heart and lungs. Not very jolly – but the alternative? After week one, I have a week back home, followed by a second week back in hospital, when this is repeated all over again. Then I am back home for 2 months, after which time, I'll be scanned and then the cycle starts all over again. This could continue for over a year if treatment is showing to be working.