Friday, 31 July 2009
It only takes a small hitch to throw the oncology ward's carefully laid schedule into chaos, and that happened yesterday. Unplanned emergency admissions delayed the start of overnight chemo for some scheduled patients. The knock-on effect today was that some of the "overnighters" were still occupying beds this morning when the day care patients' treatment was due to start.
The waiting room was almost full when we arrived at hospital shortly before 11 am - some people had been hanging around for two hours. Our main concern was that the Velcade would go past its sell by date if there was a long delay. However, Alana found a small side room where she could do Steve's obs and take blood samples for testing. Then, rather than stay on the ward adding to the chaos, we took ourselves off to the cafe for coffee and cakes, and read the newspaper for an hour until the test results were cleared.
It was still standing room only when we returned to Oncology at midday, and the bed allocated to Steve was occupied by someone else. But as the Velcade top-up only takes minutes to administer, he was fitted in as soon as another bed became available and was out again shortly thereafter. It seemed like we had been hanging about for ages, but only two hours had passed according to the car park ticket. Funny how time can play tricks on you.
So, cycle 2 moves forward, and in two weeks time, we'll know whether the drug trial treatment has worked - hopefully, there'll be something to celebrate. But we don't have to wait until then; we have good reasons to celebrate this weekend.
Our nephew Nick and his partner Kate are expecting a baby in early 2010 - great news! We'll raise a glass to you all this evening - much love and many congratulations! The weather looks set fair for Sunday, when we're out to lunch with Ruth, joined by Anne and Colin visiting from Chichester - we're looking forward to seeing you all! Europ Assistance has refunded the costs of canceling our trip to Turkey, and my regrading back in April has shown up in this month's salary. More cards arrived in the post today to extend my birthday. The score in the third test match put the icing on the cake!
Wednesday, 29 July 2009
Dreams can come true
Look at me babe I'm with you
You know you gotta have hope
You know you gotta be strong
Look at me babe I'm with you
You know you gotta have hope
You know you gotta be strong
In the past, Jack has berated me for not producing a birthday "list". This year, I've decided to indulge myself, although it's a wish list rather than a shopping list - the things I wish for the most aren't those you can buy in store or on-line.
It's also a very personal list. Hopes for world peace, freedom of speech and civil rights for all, action for climate change, an end to poverty and starvation, and other such global matters should be taken as read.
So, in no particular order, my top 10 birthday wish list is that:
- After two cycles of treatment, Leo the tumor has (at the very least) stopped growing and (preferably) noticeably started to shrink.
- After six cycles of treatment, Steve is feeling fit and well and is in remission.
- The Wride family get-together at Christmas will be the best yet!
- We can both enjoy Katie's 21st birthday celebrations next May.
- This time next year, Steve will come with me to collect my bus pass and we can jog home together.
- I can send Steve a birthday card to mark is One Millionth birthday in 2011 (in binary numbers - work it out!)
- Our ruby wedding on 1 May 2012 will be an event to remember.
- I could turn the clock back to whenever the asbestos fibres entered Steve's lungs and stop it happening.
- The risks of disturbing asbestos had been recognized at the same time as its safety benefits and commercial potential.
- Velcade works, not just for Steve, but for everyone with mesothelioma and that the cost of the drug plummets as its use increases.
Tuesday, 28 July 2009
The big wheel keeps on turning
On a simple line day by day
The earth spins on its axis
One man struggle while another relaxes
On a simple line day by day
The earth spins on its axis
One man struggle while another relaxes
The big wheel keeps on turning....here we go again with chemo (although it's not quite so scary this time round, having some idea of what to expect after the first cycle.)
Today is Day 1 of Steve's second treatment cycle: the big chemo day, with doses of both Cisplatin and Velcade interspersed by several litres of saline, a diuretic, an hour's worth of glucose solution and anti-nausea tablets. And lunch.
Steve has gained a kilo during his week off (reflecting the return of his appetite); all his blood tests came back normal, and no problems with BP, pulse, temperature, blood gasses etc, so cleared for treatment.
Unlike Day 1 of Cycle 1, everything went smoothly this time. However, news of the wasted first dose of Velcade appears to have filtered back to the drug company. As a result, in future, the trial drug will not delivered to the hospital until after the blood tests results are confirmed as clear. We can therefore expect slightly extended hospital visits from now on.
Steve's CT scan review has been set up for 13 August, so that the results will be available in time to start Cycle 3 of the treatment the following week, assuming it has been effective so far. Please, please, please, PLEASE let that be so!
Our Yorkshire mini-break went so well last weekend, we hope to arrange other visits to see friends during the chemo rest periods, towards the end of each 21-day cycle. However, we also know that Steve tends to feel tired the day after treatment, so my birthday tomorrow will be a low key affair in terms of activity. That said, I'm sure he'll have enough energy to pop the champagne cork and help me eat my birthday cake!
Whilst on the subject of birthdays, belated greetings to Mary, Stella and Jon who all had birthdays on 24 July, and a big kiss for Martin, Steve's brother, who shares a birthday (and date) with me. Enjoy yourself!
Monday, 27 July 2009
We enjoyed an end of cycle celebration this weekend - nothing to do with the Tour de France, but a trip to Huddersfield to see Katie and her partner George, to mark the end of Steve's first cycle of chemotherapy and enjoy an early birthday celebration.
We had a fantastic Italian meal out on Saturday night and visited Katie and George's new home for the next academic year, a house in town, rather than a flat in the student halls of residence, at Storthes - a long way from anywhere.
The loft "apartment" at Wellington Mill was huge, double height spaces with a mezzanine level - big enough to sleep six - so plenty of room for Katie and George to stay over with us, and more time to talk and catch up on news.
Lunch on the way out and way back care of the National Trust tea rooms at Calke Abbey and Hardwick Hall extended the night away. It felt like a proper mini-break by the time we arrived back in Oxford...just what we needed to set us up for the second cycle of treatment which starts tomorrow.
Thursday, 23 July 2009
Hindsight is a wonderful thing.
If Steve had known back in the 1960s and 70s that he would be diagnosed with mesothelioma in 2009, he would have made a record of any job he had done where he might have been exposed to excessive amounts of asbestos, a note of his employer at the time, and taken photographs of dust particles in the air, on his clothes or settling on surfaces.
30-40 years after the event, it's very difficult to remember exactly what happened when, and say with absolute confidence that he was exposed to, or came into contact with, asbestos whilst visiting sites, surveying buildings, working in old MOD huts on airfields, or doing odd jobs in factories in the vacations. Plus, we've lost contact with most of the people he worked with during that time, and many of the firms who employed him are no longer trading.
As a result of our failing memories, we came out of the meeting with the solicitor's rep earlier today with a strong feeling that a successful private claim for compensation for negligence against a former employer would be very unlikely. Still, we'll see what happens when the solicitor pulls together all the information from various sources to get the bigger picture.
In the meantime, if you have known Steve for a long time, perhaps you can help? Think back - did you help pull down the partitions in the School of Architecture to create the big open plan studio in the early 1970s? Were any of those panels you smashed up made of asbestos? Did you help clear out the building that is now Modern Art Oxford? Did that involve removing or disturbing asbestos? If anyone out there worked with Steve in any other environment where you might have been exposed to asbestos, or know of anyone else who might be able to shed any helpful light on such past events, then please do get in touch.
Enough of the memory games.
There was good news today. Katie's new laptop arrived safely very early this morning, so we can take it with us when we go to visit her this weekend. The post brought a letter confirming that Steve has been awarded Disabled Living Allowance. It's no substitute for good health, but it's some compensation for all the time spent in hospital and the dreams and plans put on hold since diagnosis.
The other news today was not so good. A close friend has swine flu, so any plans for a joint birthday celebration next will be postponed until the infection has cleared up. Get well soon, Sally and please take good care of yourself!
Monday, 20 July 2009
It's funny how just a few words can lift the spirits.
Here's just a small selection of words and phrases that have had that effect on me/us recently:
"I'm still hungry" Steve, this evening
"I feel remarkably like I'm getting back to normal" Steve, earlier today
"I think I've got my appetite back" Steve, yesterday
"My temperature has gone down" Steve, on and off over the last few days
"Your booking is confirmed" LateRooms.com earlier this afternoon (somewhere nice to stay in Huddersfield when we visit Katie this coming weekend)
"We have double booked the studio (our mistake) but can offer you an upgrade to a two bed apartment at no extra charge" Heritage Lofts, a few minutes later (somewhere even nicer to stay!)
"You bid has been successful" E-bay, earlier today (a computer for Katie, to replace the one that's just died...)
"Next year I should have some really good project work to be proud of, along with enough spare time for a part time job and any time off, if I need it", Katie's plans for the next academic year
"I've brought you something from the allotment" a bag of freshly picked lettuces, courgettes, fennel, and raspberries from Jean, this weekend
"It's good to see you both looking so well!" Rebecca, who dropped by last Friday
"Come here and let me give you both a big hug" Athena, when we bumped into her walking into town last week
"You would be welcome here any time, as you know..." e-mail from Andy and Dave, Peak District
"We're back. Come round for a meal tomorrow?" Ian and Ruth, back from Vietnam for a short visit (the answer was yes, thank you, and jolly good it was too!)
"Keep blogging...I appreciate being in touch with you, without having to bother you", Maralyn in Bognor
"You sound amazingly determined and as positive as possible in the circumstances - well done!" Angela in Brussels
...not to mention all the other e-mails, cards, messages and uplifting conversations which have helped keep us feeling positive over this last month or so....
Friday, 17 July 2009
That's it - the last dose of Velcade in Cycle 1 of the chemotherapy has been given. We can now look forward to something completely different: ten whole days without a planned hospital visit. The last time that happened was prior to Steve's diagnosis, between the first CT scan in late May which showed up fluid on the lung and going into hospital in early June for the chest drain, thoracoscopy and pleurodesis.
Fortunately, the hiccup with Steve's temperature on Wednesday has not affected his red cell or blood platelet count, so he was cleared for treatment at this morning's visit. Before leaving for the "week off", we talked some more about the chemo's side effects, to get a better idea of what to expect in the coming months, especially as we're hoping to spend a little bit of time visiting away from Oxford at the end of some of the three week cycles.
Nausea/sickness is caused mainly by Cisplatin, so should not be a problem for more than a few days after the start of each cycle. However, tingling and numbness in hands and feet and ringing in the ears are particular side effects of Velcade which (if they occur) have a cumulative impact. Something to watch out for....
The most common side effect of all chemo is tiredness/fatigue - but people react differently. In some, fatigue peaks and troughs follow the pattern of treatment, fading away in "rest" weeks. In others, tiredness can build up over time, increasing towards the end of the six cycle course of treatment. Sometimes, it can be a combination of the two - peaks and troughs in weeks 1 and 2 and respite in week 3, gradually ratcheting up over time. Other people recognize the onset of fatigue, modify their behaviour accordingly, and don't notice much change as the months pass. We'll just have to wait and see what happens to Steve.
The most significant side effect of chemo is the way it suppresses the immune system. The importance of minimizing the risk of infection was impressed upon us yet again, and acting swiftly if his temperature reaches 37.5C, even if it means phoning the hospital at 2 am. Otherwise, being careful about hand and food hygiene, using a hankie and avoiding those with coughs and sneezes wherever possible is the order of the day. Common sense really.
The jury is still out on how the hospital will deal with swine flu, should it affect staff, patients or contacts of either. However, there are facilities to isolate patients with infections and those undergoing chemotherapy are recognized as a vulnerable group and will be treated accordingly.
We also learned that Velcade costs over £3000 per cycle rather than per dose, as we thought originally. However, at £400 or so per mil, it's still hugely expensive. It had better be worth it!
Although no hospital appointments for 10 days, the meso stuff doesn't go away completely in the meantime:
The trial nurse will be in touch next week to sort out the arrangements for a CT and X-ray as part of the review of Steve's treatment at the end of Cycle 2.
We will also be visited by solicitors experienced in dealing with mesothelioma claims, contacted through Prospect (my union). We're not confident that Steve's exposure to asbestos can tracked back to a particular time and/or place. However, bearing in mind that no compensation was available when Steve's dad died as a result of mesothelioma, it's something we ought at least to explore now the family has been struck by it again.
That's enough meso-mania - time to think about nice things to do in the next ten days!
One last thing: Debbie Brewer (http://www.mesothelioma-and-me.com) was diagnosed with mesothelioma in November 2006. Following a procedure called chemoembolization, she is now in remission. Debbie is having a party today to celebrate being 50. Happy birthday Debbie and many, many happy returns :)!
Thursday, 16 July 2009
It's one calendar month to the day since Steve was diagnosed with mesothelioma and our lives took a different and unexpected direction. In some ways, it feels like a lot longer, in other ways, time seems to have flown by - we are amazed at all the things that have happened since 16 June:
- holiday cancelled and insurance claim submitted
- family and friends told of diagnosis and blog started
- desk cleared at work and arrangements put in place for the rest of the summer
- 14 hospital appointments, including visits to the chest clinic, oncology clinic, screening for the drug trial, CT scan, X-Ray, one radiotherapy planning session, three radiotherapy treatment sessions and three chemo sessions to date...plus a trip to the doctor for the pneumococcal jab
- Industrial Injuries Disablement Benefit and Compensation applied for and awarded; Disabled Living Allowance application in the pipeline...
- taken part in medical research: TIME Trial (chest drain size and pain relief); Cancer Research UK Study of Occupation and Cancer; Velcade Phase II Drug Trial and the related genetics sub-study
- enjoyed a retirement tea party, a 60th birthday party, two garden lunches and an indoor lunch with various groups of friends; entertained visitors at home and visited family in Bristol
- survived a heat wave, enjoyed Wimbledon, rugby, cricket and the Tour de France, and finally planted the lettuce seeds to provide fresh salad and the window boxes for a fresh outlook!
- been overwhelmed and greatly touched by the all good wishes, and messages of love and support from family, friends, neighbours and colleagues
It's also been a time of contrasts and contradictions:
Waiting to hear whether Steve was on the Velcade trial seemed to take forever, as did setting up the radiotherapy and chemotherapy sessions, then suddenly it was almost non-stop action, with hardly a day to catch breath between hospital visits.
Feeling almost normal, whilst being assessed as 100% disabled seemed unreal, as did the fact that everyday life carried on, regardless of the life shattering news that Steve has an incurable cancer.
Wanting to start treatment as soon as possible but fearing the side effects pulled us in different directions.
On the one hand, our lives for the next five months are planned almost exclusively around a 21 day chemo cycle. On the other hand, we take each day at a time, depending on what needs to be done and how Steve is feeling.
We think about the future but concentrate on making the most of the here and now. Our perspective on life as changed and priorities reassessed. The emotions are still raw, but we have tried really hard to be positive in our outlook...and most of the time we succeed.
By the time I write the monthly review on 16 August, it will almost be the end of Steve's second cycle of chemo - a good time to stand back and reassess how things are going two months after diagnosis.
In the meantime, although a few of our friends hate any sort of communication via computers, many others have found it helpful to read this blog to keep up-to-date with news and progress. Apologies if it sounds like stream of consciousness stuff at times (it is - that's my therapy!) and for any typos and bad grammar. I'll try to post some more photos from time to time to improve the presentation.
Please continue to keep in touch with us - knowing that you are all out there sending positive thoughts really does help!
Thank you, everyone.
Wednesday, 15 July 2009
One of the downsides of chemotherapy is that it compromises the body's immune system, making infections more risky than would otherwise be the case.
Although I felt better when I woke up this morning, it wasn't long before we realized that I had given my sore throat to Steve. His temperature started rising from 36C this morning and crept up during the day to peak at 37.3C this afternoon. That may not seem like a high fever, but it was too close for comfort to the threshold of 37.5C which triggers a trip to hospital for intravenous antibiotics and a dose of antiviral medicine.
Because Steve was feeling under the weather, I abandoned plans to attend a meeting in London and stayed home to play the role of temperature monitor. The good news is that his temperature had gone down to below 37C this evening, so no crisis. However, he feels very washed out and has gone to bed early.
The morning post brought what I hope will be the last piece of paper in the jigsaw of our travel insurance claim for the cancelled holiday to Turkey - a letter from the airline confirming that we had not taken the flights and that no refund had been given. Staying at home this afternoon meant I had the opportunity to finish the claim. Let's hope Europe Assist sort it out promptly....
The other document to arrive this morning was the Report of Diagnosis on official form DS 1500. This is a key document to claiming other allowances which the MacMillan Cancer Benefit Advisors say Steve is entitled to as a mesothelioma sufferer. Filling in the form for Disabled Living Allowance kept me occupied for the rest of the afternoon. It wasn't something that loomed large when we first looked through the benefits guidance, but today's brush with infection brought home to me just how vulnerable Steve is as a result of the chemo - let alone the cancer - so it was worth spending the time filling in the form (anything to avoid the pile of ironing......)
Tomorrow it will be a calender month since Steve was diagnosed. Time for a review, perhaps?
Tuesday, 14 July 2009
Today was one of those days where you just know from the outset that things will not go as smoothly as they might.
I woke up with a slight sore throat and a bit of a temperature to news on the radio about the spread of swine flu (although I'm more worried about passing on an infection to Steve now that his immune system is compromised by the chemo, than getting a bug myself).
Drivers on the main road were reluctant to let us into the stream of traffic at the end of our street, even though it had come to a standstill just a little further on...
Car parks near the entrance to the Cancer Centre at the hospital were all full, in spite of the signs saying SPACES, so we had a bit of a trek from one of the more far-flung car parks (but at least it had stopped raining by then).
The receptionist at the Oncology Short Stay Centre had no record of the visit, but the magic words Velcade Trial eventually did the trick. After all the normal observations were completed, we were told the bad news that the computer in the lab which analyses blood samples had broken down, as had the back-up facility on the ward. Steve's blood samples would have to be couriered to another hospital for analysis before he could be cleared for today's chemo.
We knew from the experience last Tuesday that once made up, Velcade has a very limited shelf life - and has to be thrown away if not administered quickly. We were acutely aware (as were the staff) that a long delay getting the results back from the other hospital would be bad news, so we just kept our fingers crossed and waited and waited, and read the paper, and had lunch, and waited.....
The "all clear" was eventually given with about 40 minutes to spare; the chemo itself was over in minutes.
We arrived home about four hours after setting out, a rather longer trip than envisaged, having witnessed a distracted cyclist ride into the back of the car in front of us on the journey home. We gave her a very wide berth when we caught up with her a bit further along. As I said at the start, it's one of those days......
Three whole days with no hospital appointments. What to do on this long weekend off?
Boring though it sounds, just being able to walk into town for a dose of browsing and retail therapy on Saturday had its peculiar attraction, being such a routine, everyday activity at a time when hospital visits for chemotherapy have become the norm.
After a showery start, the sun came out at lunchtime on Sunday for Roger and Stella's lunch in the garden at Cothill. It was good to meet up with friends who go back a long, long way and to catch up on news of allotments, children, grandchildren, work and leisure, and an imminent retirement. The garden looked splendid, the food and wine were excellent, as was the company - thanks Stella and Roger for a very enjoyable afternoon and to everyone for their good wishes and support.
Going to London for a work-related meeting on Monday reinforced the feeling that things were almost normal. Although I was anxious about leaving Steve alone for more than an hour or two, I needn't have worried unduly - he had a quiet day and managed to stay awake till our usual bed time.
How nice to be almost normal for a change!
Friday, 10 July 2009
After Tuesday's marathon, today we were prepared for a longer stay at hospital than expected. As it turned out, everything went smoothly - although the staff had yet to tell the consultant about the first dose of Velcade on Tuesday which had to be thrown away as it hadn't been given in the short "use by" time slot. I'm not surprised at their reluctance to confess - each dose costs around £3000. Fortunately for the NHS, the drug company picks up the bill.
Steve's temperature, weight, heart rate, blood gases and blood pressure all OK, and no evidence of low red blood cell or low platelet count, so cleared to proceed with the chemo around midday. Steve had just started eating his lunch, (and I had gone off to the shop to buy something to eat) when the nurse arrived with the Velcade injection. The procedure was almost completed by the time I had returned to the ward with a sandwich and bottle of juice. Next week, there will be two more sessions like this one, followed by a week off medication.
I have added some photos to an earlier posts. Now you can see what's happened as well as reading about it.....
We've been waiting to see how Steve reacts to the first chemo session, expecting the worst but hoping for the best. So far, so good:
No numbness or tingling in hands or feet
No unexplained bruising or bleeding
No mouth ulcers
No loss of appetite
No gritty or sore eyes
No skin rash
No hair loss
No obvious signs of anaemia
Kidney function does not appear to be affected. The antiemetic tablets are keeping nausea at bay. Ginger is good at disguising the metallic taste in the mouth (thanks for the tip, Maralyn!). Senna has had the desired effect. We have gone to bed a bit earlier than usual and Steve has had the odd cat nap, but no extreme fatigue as yet.
It's early days and some of these side effects are cumulative. However, it's been a relief to be able to carry on almost as normal for the time being.
We had an enjoyable evening with Murray and Richard last night; the prospect of visitors was an incentive to do a bit of housework (which has been ignored recently) so home looks a bit more presentable and the window boxes have been planted up.
It was good to catch up with Andrew's news on the phone. We look forward to seeing more of our friends in the flesh on Sunday at Roger and Stella's lunch in the garden (or indoors if wet!).
Back to hospital shortly for a single dose of Velcade and anything else that comes with it (saline? glucose?), then no more chemo until Monday.
Wednesday, 8 July 2009
What a day - we knew it would be a long one, but hadn't realized when we set out at 8.30 a.m. yesterday morning that we wouldn't be home again until after 8 p.m in the evening. Nor did we appreciate just how tiring doing nothing much can be - which is why the blog is a day late.
The day started with a bit of a puzzle - why was no one in the Oncology Day Treatment Centre expecting us? Phone messages were sent out to Alana (the drug trial nurse) to say that we had arrived, but it wasn't until half an hour later that we eventually found each other. Our mistake - we should have reported "upstairs" to Short Stay Oncology, rather than the Day Centre downstairs, where Steve had been screened last week...ooopps.
All the usual measurements taken - bloods, blood pressure, temperature and weight. All normal - in fact Steve has gained a little weight in the last week, which is good. First off, Steve was given some antiemetic drugs to stop him feeling nauseous. Before taking Cisplatin, which can damage kidneys, he was hooked up on a drip for 2 hours of saline solution to make sure he was well hydrated, followed by a session of Manitol - a diuretic. Trips to the en-suite loo involved unplugging the pump drip and wheeling the stand in with him. Well, I guess it makes a change from carrying around the chest drain bottle, which was his fashion accessory the last time he was in hospital!
More antiemetic tablets at lunchtime, followed by an hour of Cisplatin, then another hour of saline solution and more trips to the loo. By this time, we had got used to the routine - no drugs given without confirming name and date of birth. Guess who got his birthday wrong once? By 4 p.m. we had also read the newspaper (twice), Steve had finished a couple of crosswords, we'd looked at all the games on the I-pod, filled in some more forms, answered questions from the "pain trial" lady, taken photos and explored the corridor and roof garden. We were looking forward to what we thought would be the last session of the day before going home.
However, there was a suspiciously long gap when nothing happened after the last saline transfusion was completed. It transpired that although the trial drug Velcade has arrived safely, being new, the staff did not appreciate that it had to be administered within a specific period. By the time they were ready to use it, the drug had gone past its sell-by date by 30 minutes or so, and more had to be ordered. That was when we got a bit disheartened - not to say hungry. Steve hadn't ordered supper as we thought we would be done and dusted by 5 o'clock. Luckily, I managed to get to the hospital shop before it closed to pick up a couple of cereal bars and we were offered a cup of tea, which kept us going.
When it did arrive, the Velcade was administered within minutes, directly into the cannula rather than through a drip, so that part of the chemo was over. What we hadn't realized until then was that we would have to wait another hour or so before we could go home while Steve had a glucose solution transfusion. A sweet to go with the sour saline....
Then - joy of joys - one last dose of antiemetic tablets, before we were released into the big wide world, just as the heavy rain began to ease off.
That's it. Cycle 1, Day 1 over. Next time, we'll be better prepared - know where to go, take plenty to read/do (perhaps I should take up knitting?) and carry emergency supplies of food and drink. And remember name and correct date of birth! Now we wait to see if there are any side effects....
Monday, 6 July 2009
Steve had his last radiotherapy session today - the ultimate zap. I was allowed into the suite where the treatment took place whilst the machine was being set up. Instead of the ordinary X-ray machine I thought I was going to see, it turns out that Steve has been zapped with electrons produced by a linear particle accelerator - a huge machine which can be moved, tilted and adjusted minutely to ensure the accurate placement of the electron stream, guided by a grid of laser beams. Really quite amazing. Whilst the Linac was doing its job, the staff kept an eye on Steve - just to make sure he kept completely still - via a remote control camera linked to a couple of laptops in the safety zone, some distance away.
The radiotherapist was pleased with the condition of his skin (the cream is doing its job) so there was no need to see the nurse after treatment as originally instructed. Steve will have a check up in about a month's time to make sure there are no lasting effects, other than to stop Leo spreading into the vulnerable "port" areas. However, Phase I of the treatment is effectively over.
Phase 2 - chemotherapy - starts tomorrow. For the next 4-5 months, life will revolve around a 21 day cycle, going to hospital to take Cisplatin at the start of every cycle and Velcade (the trial drug) twice a week for two weeks, followed by a week without drugs. The calendar is marked up and we're ready to go. I won't pretend it's not an anxious time - until it happens, no one can predict how Steve will react in terms of side effects, or whether the Velcade will work as well on mesothelioma as it has done on myeloma. Follow the blog to find out.
Sunday, 5 July 2009
It's been a very good weekend, seeing friends and neighbours at Ludo's party on Saturday and having a long leisurely lunch with Jon and Sally on Sunday. Good wine, delicious food and excellent company on both days. And still the cards and messages roll in - how lucky we are to have such good friends. Everyone has been so kind, supportive and helpful - we feel quite spoilt. Thank you all.
It's certainly set us up well for the week ahead and the start of chemo - the next big step into the unknown. Watch this space.....
Saturday, 4 July 2009
Question: What brings good and bad news simultaneously?
Answer: The letter confirming that Steve will receive Industrial Injuries Disablement Benefit, based on an assessment that he is 100% disabled for life due to "Exertional Dyspnoea" (breathlessness on exertion) as a result of mesothelioma. This came as a harsh reality check, reminding us of the consequences of his condition and how important it is to enjoy life now.
However, a bit of research reveals that everyone with mesothelioma is automatically assessed in this way - it's nothing to do with an individual's condition or prognosis.
The good news is that Steve is feeling well at present (if a little pink in two places), so we'll just keep on dancin' for as long as possible. Leo, be warned - you may be shaken up a bit....
Friday, 3 July 2009
Another radiotherapy session today. This time it didn't take so long (quicker to set up the machine second time around) and wasn't so painful (the aftermath of Monday's jab is now almost gone).
Steve now has two pinkish circles on his skin around the "ports" where the chest drain and endoscopy camera were inserted (like mild sunburn) so we'll be dolloping on the cream this evening, like a lot of other people who have been sitting in the sun at Wimbledon without enough sunscreen. No other side effects, I'm pleased to say, so hopefully we'll be out and about this weekend.
Thursday, 2 July 2009
Although we didn't have to go to hospital today, the hospital came to us - in a manner of speaking. Steve had a phone call to say the results of Tuesday's tests are looking good. We think that means he will go on the clinical trial of Velcade, starting next Tuesday.
Suddenly, it's all beginning to feel more real than nightmare. It's spurred Steve into action - although he has repeatedly talked about "doing his accounts", all the comings and goings to and from hospital recently have meant that he hadn't made any real progress. This afternoon, in spite of the heat, he has quite literally started to clear his desk in preparation. The tax man would be proud of him.
Many thanks again for the messages of support which continue to come in from near and far, as news spreads. Apologies for not replying in person just yet. When Steve has completed one 21 day cycle of chemotherapy treatment starting next Tuesday, we'll have an idea of how the chemo will affect him and how we are going to live with it in the coming months.
In the meantime, there are two more radiotherapy sessions to go - one tomorrow and one on Monday, with Ludo's party in between to look forward to. Still no noticeable side effects from the zapping to report (I'm the one who's looking a bit hot and bothered after sitting for too long in the garden reading this afternoon).
Wednesday, 1 July 2009
And so the treatment begins...
First radiotherapy session this afternoon - Steve did not emerge glowing like the kid on the breakfast cereal advertisement, or something from The Simpsons opening credits. The most difficult bit (after finding somewhere to park the car) was lying still on his left side, with all the weight on the shoulder where he'd had the pneumococcal jab two days ago, which is still a bit painful.
No sunbathing for him whilst this treatment is in progress - he'll develop his own tan without exposure. A wash with simple soap and a dollop of aqueous cream is all that's needed to treat the affected area. No signs of any side effects in the first few hours post-zapping. Fingers crossed it will stay that way for the duration.
Tomorrow we have a day off from hospital visits (the first and only "free" day this working week). Back for second zapping session on Friday.