DAFFIE's blog

MOVING ON. A DAY OF MIXED EMOTIONS

2011-08-16T13:22:31Z

Tomorrow I will be moving accross country to be nearer my family. We came here to the Midlands when Gary's job moved twenty years ago. The plan was always to go back south when we retired. Sadly it was not to be, and I am making the return journey alone.

I would not say I have come to terms with losing Gary in such a cruel way, I doubt I ever will. Slowly, inch by inch, I am learning to cope without him, and accept what my counsellor calls "the next chapter of my life".

I am thankfull to everyone on the Mac site for support and inspiration It has been a great priviledge to share experiences, hopes and dreams, but now, I feel the time has come to let go.

Wishing you all peace and strength for your journeys

Daffie xxx

Wiping out sixty nine years

2011-03-07T09:59:20Z

Just over a year ago, I was able to blog that Gary had responded well to the treament he had recieved in at a German clinic, and was in remission.

We had some very precious months together, leading normal lives, until in September, the tumour started to grow again, and spread to his second lung.

Although he fought on bravely, he became more emaciated and debilitated by the week.

On 17 December 2010, he lost his battle, falling asleep in his favourite chair and never waking up.

Because he died from mesothelioma which is classed as an industrial disease, the coroner had to be notified, and much to my distress, he ordered a post mortem. Gary's poor body had been through so much, I could not beat think it being subjected to any thing else. Thanks to his wonderful GP, the coroner was persuaded that, becausw diagnosis had been made after extensive biopies, little more would be achieved at an autopsy.

The coroner's office staff have been less than helpful in the family's contact with then. the interim death certificate contained no less than three errors, including the spelling of his name.

A letter was sent to tell me the inquest would be delayed until the post mortem results were recieved! We had the distress of pointing out none had been performed. Then, two weeks ago, I recieved notice that the inquest would be held on 10 March. This was insufficient notice for either of my daughters to re-arrange sbussiness commitments to attend with me. Fortunately, Gary's brother will be able to come with me.

I am aware that an inquest is currently required by law when an industrial disease is the cause of death, but surely a little more sensitivity to could be extended to a grieving family. Perhaps, on reflection, i should not be surrised, this is the same coroner's office which failed to spot the well above death rates at Stafford hospital, now the subject of yet another enquiry.

In what I am informed, will be a twenty minute hearing, on Thursday morning, the sixty nine years of Gary's existence will be rubber stamped out of existence.

It's snowing again.

2011-01-07T07:41:12Z

It's so strange that since Gary left me, time either seems to stand still or speed up.

Can it already be three weeks since Gary left me just a week before Christmas?

So much seems to have happened since then. Christmas is a blur, and seems so far away. I know I spent it with my grandchildren, but I remember little that happened.

I didn't mark the New Year, just went to bed at my normal time after taking a sleeping pill.

This morning I listed the things I need to do today, and was about to make a start when it started snowing.

Suddenly, I was back to that awful day when Gary fell asleep forever in his favourite chair. Later I stood at the door as he was driven away into the cold snowy night. The memories keep coming back.

I know he is at peace and free from suffering, but somehow, today, that is little consolation.................

Not what we wanted to hear

2010-10-16T17:31:12Z

Yesterday G was told that the biopsies taken when his lung was drained were as expected, positive. He now has Mesothelioma in both lungs.

Treatment options are being reviewed by the oncologists at Bart's, but at the moment are very limited.

He is very frail, the weight is dropping off him, and he has no appetite. Added to that, his blood test showed he is very anemic and his kidney function is very low.

Operation over, but breathing problems remain

2010-10-08T08:47:02Z

G is still poorly, even though the operation was a sucess, and he is home again. His breathing is as bad as ever, he seems to be losing the will to fight anymore. Yesterday, our 43rd wedding anniversary, he told me he thinks this may be the end. I seem to be in some sort of trance, its as though its all happpening to someone else.

Readingother posts this morning. I am am trying to cope with practical things and not dwell too much on the future.

The last two years have been such a roller coaster ride, I have already done so much grieving, I feel emotionally wiped out.

Fearful of the outcome of an operation

2010-09-29T22:30:41Z

Over the past two months, G has become increasingly breathless. A scan done at Bart's two weeks ago showed fluid building up again in his chest cavity. Thanfully things move faster in London than in Birmingham. So, we have accepted the inconvenience and expense of him having the operation to drain the fluid at the London Chest Hospital.

I have tried so hard not to dwell on what this development might mean, but now that we are packed ready to travel down tomorrow, I am so afraid that we are about to hear bad news.

I am trying to be positive, and give thanks for the two years we have had together after his diagnosis, but without much success.

I am a very proud mum.

2010-09-06T21:29:11Z

Yesterday our younger daughter, Claire, and a five of her friends cycled twenty-five mile on a sponsored ride for the June Hancock Mesothelioma trust.

They have raised over two thousand pounds, and the money is still coming in. A fantastic effort from six ladies who normally get together to eat and drink and relax. Not to be left out nine of their children, ages ranging from five to eleven joined them for stages of the ride. They were supported every step of the way (should that be every turn of the pedals?), by husbands, friends and colleagues.

My pride is tempered with sadness. “Team Meso” chose to support the charity because Claire’s father is suffering from Mesothelioma.

I don't know whether to laugh or cry Part 2

2010-03-13T17:04:02Z

New readers start here.

My husband, (Leading Man) was diagnosed with Mesothelioma in September 2008. The prognosis was six months to live, or possibly nine with treatment. When UK medicine had given him what limited treatment was available on the NHS, he turned to Professor Vogel of Frankfurt University for help. The Professor has achieved a much higher survival rate for lung and liver cancer patients by administering chemotherapy directly to tumours, via a line inserted into the groin. The professor accepted Leading man (LM) as a patient. LM accompanied by wife (Leading Lady) made five trips to Frankfurt for treatment, and is currently in remission.

From the first, UK medics were sceptical in the extreme, even when LM referred them to the Prof’s published results. As time went on, and LM continued to thrive, the scepticism increased.

At LM’s three-month check up last week, the consultant’s new registrar was at a loss when he saw LM. He had only read the diagnosis page of Elm’s records, so was obviously stunned to see such a healthy specimen before him. He asked how LM was feeling, and when his chemo finished. LM replied November last year. The registrar was perplexed, so LM patiently explained about his treatments in Germany. The light dawned. Registrar confirmed LM is looking well, and suggests a follow up in three months. Then, LM asks if CT and MRI scans can be ordered so copies could be sent to Professor Vogel in Germany. Registrar had to consult the boss, who while perfectly pleasant has always been highly skeptical of the Prof’s methods. With admirable restraint, Leading Lady (LL) said sweetly it is over a year since LM last had a scan in the UK so is it time for another. The answer is a resounding no.

Now read on…..

For several days, LM and LL fumed at this travesty of a consultation. Arrangements are made for a GP referral for private scans; all is again right with their world.

Then a copy of the registrar’s letter to LM’s GP arrives. Hidden in the medical speak is the unmistakable message that this man in one big pain. How dare he ask for a scan! The professor’s efforts are dismissed as having dubious benefit. And adding insult to injury, would LM be good enough to provide copies of the scans already taken in Germany so they can be put on his NHS record? I leave you dear reader to imagine LM’s response to that request.

Suffice to say, LM will asking that his continuing UK care is transferred elsewhere.

Technical Question

2010-03-13T11:43:13Z

Whenever I post to a forum, I type my contribution in neat paragraphs. Then, when I post, all that shows is a block of text. Can someone please tell me how change my set up. I thought I was computer literate .......................

I don't know whether to laugh or cry

2010-03-03T14:50:58Z

For new readers, many of us carers try to make light as best we can of our dreadful situations. The following post is written in that vein. Underneath the banter is very frightened wife trying to live with the knowledge that her husband is terminally ill. In the last episode, our gallant leading man (LM) was bravely fighting shingles, and a related eye problem. Now read on. The eye problem is abated, and the shingles have responded well to treatment. GP has assured him that any residual soreness will pass in a few weeks. LM decides he is fit enough for a weekend visit to the grandchildren. Leading lady (LL), mindful that the three month check up is looming, and as usual paranoid with worry at what they might be told, is glad to have something else to think about. So, on a sunny Friday morning they journey south, arriving in time to collect grandchildren from school. After a thoroughly enjoyable weekend, they return north to await the dreaded appointment. In her more rational moments, LL reflects that the amount of bad news she can expect is limited by the fact that no new scans have been done, and, following the pattern of previous checks, any prognosis will be limited to what can be heard by applying a stethoscope to G’s chest. The day dawns. LL wakes with familiar sick feeling in her stomach, and tries to keep busy until it is time to leave. LM always insists on arriving an hour before his appointment, so all too soon they are heading off to the hospital. Disaster. All car parks are full. LM joins the queue for spaces and grunts “I told you we needed to get here early”. LL grits her teeth and says sweetly, “just as well we are then”. Eventually they find a space, and check in at reception. There are numerous questions to answer, and the process takes longer than checking in at the average airport. The next obstacle is the clinic check in. LL wonders why they need to check in twice when all details are computerised. Could this be an NHS job creation scheme? They find seats and wait. And wait. And wait. Eventually a nurse bawls across the waiting area for LM to come and be weighed. He returns, and we wait some more. An hour after the appointed time, LM is called to the consulting area. The oncologist literally wrote him off when UK chemo finished, and passed him over to a respitory consultant. Today we are not granted an audience with the great one, but are ushered to the presence of his registrar. The poor man seems at a loss when he looks at LM. He has only read the diagnosis page of LM’s records, so is obviously stunned to see such a healthy specimen before. He asks how LM is feeling, and when his chemo finished. LM replies November last year. The registrar is perplexed, so LM patiently explains about his treatments in Germany. The light dawns. Registrar confirms LM is looking well, and suggests a follow up in three months. Then, LM asks if CT and MRI scans can be ordered so copies could be sent to Professor Vogel in Germany. Registrar has to consult the boss, who while perfectly pleasant has always been highly sceptical of the Prof’s methods. When pushed, the consultant agrees to a CT scan, the first for a year, but an MRI is a big no no. LL shows admirable restraint, and refrains from pointing out that surely, since the only last UK CT scan was none over a year ago, it might be time for another. The consultant declines to listen to Gary’s chest, saying that it would not tell him anything! Yes, you’ve guessed it, he looks well therefore, he must be well. Come back in another three months. So, now the star players wait for an appointment for a CT scan. The MRI will probably have to be done privately. The professor has asked to see scans in early April, Will the NHS deliver in time…….Wait for the next (thrilling) instalment.

Crisis over for now

2010-02-20T14:52:12Z

G saw the eye specialist again yeaterday. No sign of any imflamation after the drops and cream prescribed, and he has been discharged from the clinic. Relief all round. This morning, a copy of the letter sent to his GP arrived. Although traumatic, this has been our first positive experience of the NHS for as long as we can remember. I'm still not sure whether this is because G was in a different speciality from cancer, or being treated at different hospital, or possibley both. At none of the three outpatients appointment did he have to wait more than fifteen minutes, and the staff were so much nicer. If only cancer clinics would take note. We are off to visit the grandchildren next weekend. That will take our minds off the 3 month check the following week. It's about this time i start to get twitchy. I keep telling myself that it must be a good sign the G is so well, has a good appetite and is keeing his weight on. Daft i know, but I just can't help worrying.

Making a crisis or several out of a drama

2010-02-15T21:43:11Z

Are you sitting comfortably, this may take some time. Comfort food, or favourite tipple, or even both at the ready, then I’ll begin. Recovered from treatment overseas, husband is feeling rested and well. Wife dares to suggest a weekend break at a country house hotel an easy drive from home. Husband agrees, the booking is made and off they go. All goes well, and they return home relaxed and happy, replete with good food and wine. So where to journey next? Half term is approaching and arrangements are made to spend some time with grandchildren who live two hundred miles away. Our happy couple spend the next week pottering round the house and anticipating their next trip. Then, disaster strikes. Husband, rarely for him, complains of a bad headache. Wife offers painkillers, tea and sympathy, but to no avail. Two days later, there is no improvement, if anything the headache is worse. This being Friday, and mindful of the problems in getting medical assistance at weekends, wife suggests a call to the surgery. Husband decides it is not that bad and takes more painkillers. The headache gets worse still. By Friday evening husband is forced into a darkened room. The following morning there is no change, and so wife proposes a call to NHS Direct. Husband flatly refuses having had several bad experiences with the service in the past. By evening, husband still has a blinding headache, and has developed a livid red rash on one side of his forehead, and one eyelid is swollen shut. Still he refuses NHS Direct. He tells wife the headache seems to be subsiding, but she is not convinced. Wife is now very worried. She is sure she has read somewhere of a Meso rash suffered by Mesothelioma patients. She knows the cancer can spread into the abdomen, but doesn’t think it can metastasise to the brain As the surgery opens on Monday morning, husband calls for an appointment. You will be ahead of me here. Only emergency appointments are available. The duty doctor will call back to asses whether husband can be seen today. The doctor calls husband explains symptoms, and yes, he can be seen. Husband insists he can drive himself to the surgery so wife waits anxiously for the outcome. Husband is away a very long time. His mobile is switched off, so wife can only wait for news. Eventually the wanderer returns, he has come via the pharmacy and supermarket, and is bearing various pills and potions to treat his condition, and as a treat for wife, cream donuts. The diagnosis, he has shingles. Three days later, husband is much improved, and the rash is subsiding The story continues………….Well, I did suggest refreshment might be in order. Did you think he was recovering? Oh, no. This man never does anything by halves. On Thursday evening, he complains of blurred vision in the eye on the side of his face affected by the rash. Wife is immediately back to panic mode, fear a detached retina or worse. She insists that husband contacts GP tomorrow to get advice before the weekend. So, husband goes back to GP. GP inspects the eye, says he can see nothing obviously wrong, but because shingles can affect nerve endings in the, eye he will refer husband to an eye clinic. By now, it is Friday afternoon and the clinic is closed. An appointment is made for Monday morning at one of the few local hospitals where husband has not so far been treated. GP instructs that if condition worsens over the weekend, husband should report to the casualty eye clinic. Thinking he will get ahead of the game, husband phones the hospital to ask if the clinic operates on Saturdays. The answer is no, but a consultant will available on Sunday morning. Fast forward to early Sunday morning. Husband and wife arrive at the hospital, and are pleasantly surprised to find a large car park area near the entrance set aside for blue badge holders. After walking down gleaming corridors, they arrive at the clinic. A pleasant nurse books them in and takes some preliminary vision tests. Soon the consultant arrives, smiles at the assembled patients, and wishes them “good morning”. A while later, husband is summoned to the consulting room. Wife waits anxiously. Soon husband reappears. The consultant has confirmed what the GP suspected. The shingles has caused inflammation of nerve endings in the eye. The good news is that it is treatable. A selection of drops has been prescribed, and a follow up appointment made for later in the week. As they head back to the car, wife wonders whether this hospital is the exception to the rule, or, if off-hand undignified treatment in grubby surroundings experienced by husband in other out patient clinics is reserved especially for cancer sufferers.

Collateral Damage

2010-01-28T11:22:06Z

Here we go again. Suitcases at the ready, piles of neatly folded clothes. But this time we are travelling for pleasure. A last minute booking for a weekend in a country hotel on the edge of Sherwood Forest. That’s what the brochure says, the reality is more like a holiday camp for grown ups. But who cares we are getting away!!!!!! And this time it is for pleasure. A two-hour drive, no hanging around airports just get in the car, drive, and we will be there. It’s awhile since I had occasion to wear my glad rags, and yesterday I became aware of the collateral damage of G’s treatment. I have put on weight. I joined him too often in starchy calorie laden snacks as he struggled to put back the weight he lost. Comfort eating, chocolate and glasses of wine haven’t helped either. Heigh ho, all was not lost. I used the excuse to shop and shop. With new clothes, hair do booked for this afternoon and spa treatments to look forward to; I am so going to enjoy our break. The diet can wait until Monday!

THE FINAL CHAPTER STARING PATIENT AND WIFE AND FEATURING THE WEATHER

2010-01-15T21:43:01Z

Early morning on the day before treatment, Patient and wife having packed warmest clothes and thermals, surf the internet for details of flight delays, or cancellations on the Birmingham to Frankfurt route. None are posted, both airports are said to be operational, even though it is snowing in Frankfurt. Two hours later snow is still falling in Frankfurt, but now, to meet the check-in time, they need to leave for Birmingham. The house secured, luggage loaded into the car, our intrepid travellers swaddled in layers of warm clothing, slither along icy roads. Fate is on their side. Two miles on they are able to join the almost snow free motorway. Fast forward to an airport check-in desk. Passports are presented, booking details checked, then……the airlines computer goes down…..twenty minutes later, service is restored and boarding passes are issued. On to security. Divested of several layers of outer garments, scanning commences. Wife’s hand luggage passes screening, and she collects her bundle of clothing and waits for the patient. He is not so lucky. His liquid medication is contained in large, unopened plastic containers and so must be examined. The repeat prescription is presented, and a supervisor summoned to inspect the contents of the various containers. What are these medicines for he asks. Wife wants to shout cancer, but knowing patient will be embarrassed, she bites her tongue while he says Mesothelioma. The supervisor has no idea what he is talking about, decides the patient is an unlikely threat and waves him through to the departure lounge. So far so good. After a nervous two hours, boarding starts at appointed time, and soon our travellers are belted in ready for take off. The pilot welcomes them on board, and announces that it is snowing in Frankfurt. He hopes conditions will allow landing there, but it may be necessary to divert to another airport. Patient and wife try desperately to recall from long ago geography lessons where that might be, and how long it might take to travel on to Frankfurt. Memories have dimmed with age, and guesses range across most of northern Europe. Wife is fortified with an expensive glass of cheap wine. The flight is otherwise uneventful. As the plane descends into Frankfurt, the extent of the snowfall is apparent, but our brave pilot makes a successful landing. The temperature is well below freezing, as the passengers squelch and slide from the plane into a bus (this is low cost flying), for the ride to the terminal building. Against the odds and wife’s better judgement, they have arrived. Fast forward to the following day. After an anxious wait, patient and wife are ushered into the presence of the professor who has already done more to retard the growth of the tumour than the combined resources of UK medicine could achieve. Today he is going to remove as much as possible by laser. The tumour will not completely disappear, and at some time in the future, will start to grow again, with the inevitable result. The patient signs a consent form, and is taken into the charge of a nurse who reassures wife he will be well looked after and promises to call her as soon as the procedure is done. An hour later the nurse come tells wife all went well and ushers her into the ward where the patient will rest for four hours before returning to the hotel. Wife sheds tears of relief, while the sedated patient snores gently. When the patient wakes, nurses offer him and wife food and drinks. Before discharge, the patient is whisked off for a chest X-ray to check there is no internal bleeding. All is well, they can return to the hotel for the night. An appointment is made for a final scan and consultation the following morning. After the events of the last two days, wife does not sleep well for most of the night, listening out for any signs of breathing problems as the patient slumbers on. At the next morning’s consultation, the professor tells patient and wife that the procedure was a success, and overall, a seventy percent reduction to the tumour has been achieved. Wife holds back tears, remembering the original prognosis of nine to twelve months survival, already well exceeded. The treatment has severely depleted lifetime savings, but the patient is thriving and she prays he continues to do so for a long time yet. In a Hollywood production, romantic music would swell to a crescendo as miraculously cured patient and wife fly off into the sunset. The reality is a return to a snowy and fogbound Birmingham airport and an uncertain future.

THE NEXT INSTALMENT

2010-01-10T18:54:18Z

The novice scriptwriter continues.... Patient's wife is at best of times a nervous flier. She tolerates long haul business class as a means to see distant places, after a relaxing glass or so of complimentary champagne. She has spent a nervous day consulting official and unofficial weather forecasts. The UK airport (Birmingham) is operating normally except for flights to places where there is a problem with snow. After much internet surfing, she discovers that hundreds of flights out of Frankfurt.have been cancelled. Panic sets in, then, a check with the low cost no frills, bring your own paracute airline shows a list of cancelled flights. After much scrolling up and down, she confirms that Frankfurt is not included. Relief all round. But, she makes the mistake of checking the weather in Frankfurt: it is snowing. Two hours later, it is still snowing......and two hours after that.... By now husband has told her to stop worrying, they will get away... Wife disolves into tears, and tells him he knows how much she hates those tiny planes...Cue romantic music, think Laura's theme. He is so brave, wife feels so dreadful at being such a wimp and bravely goes to pack as much warm clothing as she can carry to the plane as hand luggage. She doesn't dare tell her husband that heavy snow is forecast for Thurday the day they should be coming home. Instead she rams more undies into the already groaning case. If she is to be stranded in Frankfurt she will at least have a supply of clean knickers. If there is a delay before the next instalment, fear not, we may be gone some time........ With appologies to Buzzie for plaugerism. Beneath the lighthearted banter, is a frightned woman.