Good news scan stable

Good news the scan shows no progression, still have the usual inflamation but no development in anything nasty since the last one six months ago. Here’s hoping everybody elses scan results are as good.

We had the usual walk of doom to the appointment, although this time as the weather was so good we left early and walked along the south bank up to Guy’s. Past all the buskers and tourists, it felt slightly surreal to be on our way to a hospital. When we got to London Bridge it all got very confusing because it has been made one way for the olympics, we kept being redirected from where we wanted to walk through by traffic police who said we couldnt get to National Rail that way, in the end we got one who was sympathetic to us saying we wanted to walk through to Guy’s hospital and let us through without a major diversion.

Walking in to the hospital, I got the usual feeling of my brain leaving my body, it’s as though your mind is saying to your body “actually i’d rather not go in here today but please feel free to go on without me”.

The appointment itself was straight to the point, good news from the scan, quick listen to the lungs to confirm fully inflated, quick chat about the pain, which was basically yes it is due to nerve damage, and it may well not improve, so see you in six months for the next PET scan.

We thought time to celebrate, so a few drinks , a meal and then a walk back along the Thames to see the bridges which are all lit up for the London 2012 exhibit called Dazzle.

Roll on Autumn and some more suny days.

Scan completed – results on Friday

Given up all pretence at trying to handle the countdown and just admit to being a nervous wreck, the only silver cloud is my appetite is always ruined this week through the nervous tension, so at least I don’t put on any more weight.

They fixed the scanner on Tuesday morning, phoned in the afternoon and said could he come in lunch time today. No problem, unfortunately when he got there at lunchtime, they found out they had run out of the radioactive isotope they use, so a process that should have started at lunchtime, didn’t start until 3.30pm. That meant he didn’t get out until 5.30pm.

The big problem is you can’t eat before a scan, so no food all day not even a cup of tea, just water. Rather than face the rush hour we found a local restaurant and made sure there he got a big dinner- which did restore his humour , pollo milanese followed by tiramisu.

Then headed home in this bitter cold. Results due in under 48 hours so one way or another we’ll know if the last scan was bad news or infection very soon.

New scan date 31st January

Just had the dreaded letter through confirming the next PET scan on 31st Jan at 11.30am . This one takes quite a few hours although they have been very efficient in the past about trying to get you through everything as easily as possible. Then we have the appointment on the 3rd Feb to discuss the results so not too long to wait with the usual sword of Damocles hanging over us.

So 20 days to go, bit too early for it to be at the forefront of our minds, but give us another two weeks and we will both be entering the anxious zone.

Given the last one at the end of November was compromised by the pneumonia, we don’t know if the hot spots were due to significant progression of the cancer or a result of the pneumonia infection. We know the infection has cleared up , so this one will be a very clear indicator of what is going on.

Will soon be entering the hope for the best, prepare for the worst run up, which seems to involve your brain doing lots of pre-prep work on imagining all the really bad outcomes and practicing on how you’ll deal with it, whilst your heart and all the non logical bits refuse to believe anything bad can happen.

I have learnt that best not to do anything too tricky at work in the last week of the countdown , as my decisions definitely can’t be trusted.

good weather expected on Friday so we are going to head off to Stokes at Stockbridge for lunch , which we have promised ourselves for over 2 months now but it had to be delayed due to the pneumonia, really looking forward to it. It’s a lovely village , with art galleries , restaurants and craft shops, so loads to explore.

 

A late letter

Having set our targets , focussed on the positives and entered into 2012 with as upbeat an attitude as possible, we stumbled at the first hurdle this morning with a copy of a letter to the GP from Barts.

Whilst I do have confidence in the hospital, their postal service wouldn’t win many awards. It was an update from the November scan, basically confirming it wasn’t good news and suggested significant progression, however, due to the possibility of an infection the results weren’t considered reliable and a new scan was planned for early in 2012.

Absolutely nothing new in that, just what we were told at the appointment but seeing things written down always seem so much worse for some reason. Plus of course whilst we are hoping the scan showed infection there is always the chance it wasn’t anything to do with bacteria and everything to do with our old friend mesothelioma.

It reminded us how easy it is to get knocked sideways and if not careful how you can miss out on good days because you get so caught up thinking about what possible bad news might be coming your way next.

Still 4 weeks to the next scan so too soon to worry yet, instead he spent the morning repairing a leak at the window, the torrential rain we had today certainly tested the existing seal beyond its limits.

I battled through my first day back at work and debris on the tube line . Am fully blackberried up and back in work mode ( until Thursday anyway)

 

One year on

It is almost one year to the day we first visited Barts and met D Steele, Ray had already had a pleurodesis at Oxford , so we had a pretty good idea what we were dealing with , but it was Dr Steele who gave us the formal diagnosis of mesothelioma.

I remember how hard I prayed on that first visit it would be the epitheliod type, that there would be some hope. The previous doctors effectively told us not to expect to see Xmas.

So today is a day to give thanks, because one year later , still here , still fighting, still enjoying life.

We chatted through the PET scan in more detail, it was good to see the top part of the lung shows a definite improvement. At the base , whilst the area of uptake is less, the density is greater. Overall, it should be stable but there is no doubt about the increased levels of pain and the return of the cough. This is enough to suggest something isn’t going to plan, so in 6 weeks we come back for more scans and in the interim we will get all the info on the ADAMS trial. The good news is that because tissue samples were taken at the time of the pleurectomy , we don’t need to do anything they just need to test what has already been taken.

To celebrate our anniversary, we stopped off at 1 New Change for  a small glass of champagne and then went on to eat at Barbecoa. Great meal and a fabulous view .

 

We thought how much we had we had to be thankful for, firstly getting a great team on our side of surgeon, oncologist and nurses. Shown again today , when our scan hadn’t been received by Barts ,the oncology nurse made a special trip to collect it from St Thomas’s and make sure it was uploaded for our appointment.

Thanks for getting through the surgery, for surviving the hell of chemo, for the strength and support of our friends and family, for finding new friends through Macmillan and for my old and new employers in supporting us financially to be able to enjoy our time together.

One year ago, we thought he had three months left, so thank you for every day since, here’s too many more

One last request, appreciate a long way down the priority list but would be quite good if Wales could beat France tomorrow !

Another PET scan

Well the new scan is booked for tomorrow , so another fun packed three hour hospital visit . The PET scan takes a lot longer than the CT, as once they have injected the radioactive glucose, which takes around 30 mins, you then have to rest for around 90 mins for it to be taken up around the body , then have the scan itself.

We have a follow up appointment booked with the surgeon to discuss the results the following Wednesday and the oncologist on Friday 14th, so by the end of next week we will know the extent of the bad news.

We know the little darling is back, now we need to know just how quickly it is growing . The last scan was done on the 27th July and showed no conclusive evidence of any meso, so this one will show us the spikes in glucose uptake where it has developed.

From the areas of pain,it appears most likely to be in the chest wall and diaphragm. Today as well as pain in his back, his chest wall was also tight on the right hand side. At the moment neurofen in the morning and evening is just about controlling it , we have also been prescribed some much harder hitting painkillers.( dihydrocodeine)

What’s really scary is four weeks ago, we were having a great weekend in Goodwood, no pain at all. Then an ache around 2 weeks ago, now we are talking about serious painkillers just to get through the day. I really don’t want to think about just how quickly this is growing or how to deal with the pain.

As so few of his family know about the situation, it is coming very close to having to sit down and tell everyone , including his teenage son, just what is going on and how much time is possibly left.

 

Sorting out the car

A day concentrating on repair estimates, discussions with insurers and claim assessors. Hopefully everything now completed , we just need to hear back from the claims people. Apparently will need around 10 days off the road, so need to time this around hospital appointment etc.

Looks as though will be in next week, if go ahead received . In some perverse way, has been good to have something other than meso to think about. Not that I ‘d recommend a car accident as the best diversion.

For some reason today he has been really breathless, as bad as with the pleural effusion. Fingers crossed not some indication it has suddenly progressed. Also slept badly and had reoccurrence of the night sweats, then again was really warm last night. Surely not everything can be linked back to meso, he has really itchy ears at the moment, not seen that listed as a side effect anywhere.

Good news is taste buds coming back with a vengeance, actually enjoyed a glass of red wine last night, plus the nasty taste in his mouth has almost disappeared, just the odd reoccurrence.

Now just need a good meeting with the surgeon on Wednesday , his shoulder to improve, been really sore since the PET scan when he had to hold his arms above his head for around 30 mins.

Weather looks as though will be equally good tomorrow, so will have to make the most of it, today has been real bar-b-que weather, sitting here outside surrounded by the scent of wafting sausages from neighbours gardens.

Not yet sorted out upload of photos to iPad, other than by email, at the moment have one photo uploaded of a damaged coach! so nothing too exciting, hopefully will have a few more pleasant images shortly

The great scan debate

Having read at the weekend about people having to wait ages for a scan , rather like buses two have come along at once. In the blue corner ,  the long arranged CT scan due next Friday, in the red corner just had notification  today about a PET-CT scan booked for next Wednesday .

Positron emission tomography (PET) and computerized tomography (CT) are both state-of-the-art imaging tools that allow physicians to pinpoint the location of cancer within the body before making treatment recommendations. The highly sensitive PET scan images the biology of disorders at the molecular level, while the CT scan provides a detailed picture of the body’s internal anatomy. The PET/CT scan combines the strengths of these two well-established imaging modalities into a single scan.

A CT scan is able to detect and localize changes in the body structure or anatomy, such as the size, shape and exact location of an abnormal growth, a sizeable tumor or a musculoskeletal injury.

A PET scan is very different from an ultrasound, X-ray, MRI, or CT scan. A PET scan allows the physician to distinguish between living and dead tissue or between benign and malignant disorders.

When disease strikes, the biochemistry of your tissues and cells change. In cancer, for example, cells begin to grow at a much faster rate. In one continuous whole-body scan, PET/CT captures images of changes in the body’s metabolism caused by actively growing cancer cells and provides a detailed picture of the body’s internal anatomy that reveals the size, shape and exact location of the abnormal cancerous growths.

The PET/CT scan begins with injection of a glucose-based radiopharmaceutical which travels through the body, eventually collecting in the organs and tissues targeted for examination.

The patient lies flat on a table that moves incrementally through the PET/CT scanner. The CT portion of the exam sends X-rays through the body which are then measured by detectors in the CT scanner.

The PET scanner has cameras that detect the gamma rays emitted from the patient, and turns those into electrical signals. These are processed by a computer to generate the images. The table moves slowly through the scanner and many sets of PET and CT images are produced.

The CT and PET images are assembled by the computer into a 3-D image of the patient’s body. If an area is cancerous, the signals will be stronger there than in surrounding tissue, since more of the radiopharmaceutical will be absorbed in those areas.

All sounds very exciting – but either way really we just want a good result . He is getting concerned about the level of pain across the top of his stomach and is now having sleepless nights imaging the tumour traveling through his body . I alternate between impersonating an ostrich and pretending no scans are due at all , whatever their alphabetical acronym, and thinking any knowledge is better than these dark imaginings.

Looks as though August 3rd is our new D-day

A new countdown begins

No sooner does one countdown end than a new one begins. Instead of our lives being ruled by chemotherapy appointments, it is now ruled by scans. Already 29 July is zooming towards us, with its needles and hospital waiting rooms, but also the crucial question of has any of it been worthwhile ?

Two weeks to go, already it sits constantly in the back of our minds. Sometimes it may be buried a little deeper, but it is always sitting there ominously in the corner, like a gathering storm cloud.

Both of us feel continually anxious the PET scan will show new active cancer , our lives now feel totally on hold. Almost feels like tempting fate to even talk about the future. Getting a grip on this is proving really tough, rather like getting the initial diagnosis all over again.

In honour of Peter, another meso warrior, his favourite quote seems appropriate….

“Life may not be the party we’d hoped for, but while we are here, we may as well dance”

A visit to Barts- PET & CT scans

Image via Wikipedia

Day dawns on our pre chemo check up appointment, due 1.30pm today. Awake early as usual ,always starts to get a bit stressful, you’d think we’d be used to it by now, hospitals are never the best place to be going on your day off.

Going in early to check out bloods, hopefully will be OK, or at least marginal, still another three days to treatment day , which gives them a bit of time to recover. Overall he is quite perky today, put on some dance tunes yesterday and had a dance around the kitchen which got the blood moving ( no prizes for content, Britains got Talent won’t be calling).

Watched Springwatch with the cats last night (their favourite programme), looking forward to making the most of summer as he starts to recover from chemo, now trying not to think about the next scan.

Quick update on the visit , asked about difference between a PET and CT scan, doctor used analogy of the stuffed white tiger that caused 4 helicopters to be scrambled recently , a CT scan would show the shape of the tiger , the PET scan would show you if its heart was beating. Apparently the latter picks up on cells that are using more energy , which show up more brightly , you drink a tagged sugar drink beforehand. As active cancer cells use more energy, they  show up more brightly – the drawback about having one in 6 weeks , is it is still within 6 months of the original surgery so the pleura etc is still healing which means they are also using more energy. making the results difficult to interpret.

Blood results hadn’t come through before we left, so fingers crossed all OK, at least had the benefit today of a really good nurse , who took the bloods with no pain at all – you’d think it was a pretty basic nursing skill , but very few have done this painlessly , most have left bruising and some have been really painful, in overall scheme of terminal cancer it may seem minor but these things do make a difference. Suggest in all this NHS reform that maybe a bit of extra training for nurses on taking blood painlessly might be useful

At this stage , CT scan booked for 29 July , but oncologist is going to check with the surgeon to discuss our case and see if he feels a PET scan is appropriate.

Also mentioned that at last chemo , they didn’t have any prescriptions for us, so he entered everything into system whilst we were there- don’t want any mix ups on Tuesday , bad enough dealing with the Unions and their strike actions on the underground.

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