Linda (Lindy) Dowling (Foulger)!
Health Updates (Scroll to end for latest)
For earlier stuff, including how the diagnosis arose, operation and treatment, please go to this website: www.weircottage.com you might need to copy and paste
We are blessed with many caring friends and family, and it is very easy to inadvertently miss out an update with so much about to happen. In an attempt** to overcome this Shane will be updating this page at the very least each day.**
The background to the diagnosis is shown here, and operation and treatment to 30 March, 2023: www.weircottage.com
Tuesday, 4 April – yesterday afternoon the hospital phoned again and now a CT scan on Saturday. We don’t know reason unless the blood tests were in some way worse than they were expecting. Suppose we will find out at Tuesday’s appointment with oncology.
Monday, 10 April – on Saturday, Linda had the CT scan in Salisbury. Tomorrow the appointment with oncology and, hopefully, hear what the issue is with the expedited blood tests and scan. Today, though, the family here (including Neil, my new brother in law, who lives in Norfolk) for lunch and Easter egg hunt/duck race, I will update tomorrow after the appointment.
Tuesday, 11 April – the appointment today at the oncology unit in Salisbury was with the nurse. She went through everything that is involved with the therapy including a very long list of possible side effects. We were shown the suite in which the infusions will be administered followed by two weeks of tablets, night and morning. A week ‘off’ then it starts again for an intended total of four sessions.
During these twelve weeks, natural immunity is impaired so mixing is to be minimised and visitors should take precautions via Covid tests. The first round of treatment commences next Monday, 17 April, and the patient cannot be accompanied which I’m disappointed about and is at variance to my earlier experience. Everything changed due to the pandemic.
The big elephant in the room….apart from me :-) …was this thing about how come more blood tests were ordered and the CT scan. The nurse genuinely did not know why except that the blood test taken at the last pre-meeting (a baseline for cancer marker) was not shown at all. Another blood test was today which is the one for immediate treatment.
Since getting home we phoned our liaison nurse, Paula, and it is so brilliant that you can easily get to talk to someone who knows you and do anything to help. The upshot is that there is nothing whatsoever to be worried about, everything is looking good and certain readings knocked off course due to huge surgery, returning to normal. More updates next week.
RECOVERY, PHASE 3
Recap – Phase 1, the stent procedure in January to relieve the jaundice and skin irritation. Linda says this was the worst part to have endured.
Phase 2, the Whipple operation on 21 February
Phase 3, oncology
Monday, 17 April – Linda went into Salisbury hospital just before 9 a.m. and as I said in an earlier post, since Covid, patients can no longer be accompanied. We do have WhatsApp, thank goodness. So while Linda got hooked up I went to Tesco for a very nice English Breakfast and a pot of tea and get a few things. Technology moves on all the time, and they first put her arm in an air glove. This is like inserting your arm in a plastic bag attached to a hair dryer. It helps prepare the arm and veins for the cannulas.
They had said that the drugs would not come from the pharmacy until late morning and just before noon they did. Prior to that a water flush, anti-sickness meds and steroids. They check what is being administered in pairs to ensure no patient gets the wrong stuff.
Linda wrote: ‘Now this is interesting: during and 3 days after this infusion I will be very cold sensitive. No chilled drinks or food as my larynx will go into spasm. Remedy is don’t panic and drink warm fluids. Also don’t touch cold metals. Wear gloves.’ I’m thinking she should be okay for washing up (joke).
11.51 the infusion begins and will take two hours plus 30 mins flush through.
15.00 Linda home. Pins and needles and a bit shaky but oherwise fine. Tablets for the next two weeks.
Wednesday, 19 April - although method in our madness we decide to drive to Scotland (!) as Linda feeling very good. The idea to get back on Sunday or Monday with overnight stops in various places going south.
Saturday, 22 April – after not feeling well at all since Thursday evening (known chemo side-effects) decide to drive back in one go from Cumbria where we were overnight. Linda very tired and no energy whatsoever and a tightness in the chest and throat where the latter a known issue where they advise: keep calm, drink warm water. This usually makes the condition subside.
Leading up to midnight the condition much worse and eventually phoned the 24 hour number we have. They said to go to A&E and say expected. After about half an hour waiting, and with the situation worsening, we got called in and all hell broke loose. Violently sick, very tight chest and she was taken to the resuscitation unit! Heart rate was 200-230 and extreme difficulty getting a cannula in. Eventually succeeded using an ultrasound machine to find veins.
As a precaution, they attached patches as they thought they might need to shock the heart and wanted to have these in place ahead of time rather than in a situation of cardiac arrest. It was very frightening. Anti-sickness and heart drugs were infused and then morphine. At one point the heartrate reduced to about 140 bpm only to shoot back up again over 200. Pain in the jaw another symptom of possible heart attack and this had been happening for a day or longer. My medical knowledge is increasing exponentially.
At about 4 a.m. the heart rate at last steadied at around 90 bpm. They wanted to transfer her to the oncology ward but two problems: 1. They were not sure there would be resuscitation facilities there (turned out there isn’t); 2. There was no bed available anyway.
At 5 a.m Linda was moved to an A&E cubicle out of Resuss and I went home. This morning no message from her (always a bad sign as most of you know). Phoned hospital and she was still in A&E! Vital signs returned to more normal levels and about 1.30 pm moved to the Acute Medical Unit (AMU).
Sunday afternoon, 23 April - So the situation now, presumably, is that oncology will have to decide what to do with chemo or to stop it as it was anyway a precautionary treatment after curative surgery. Stands to reason this can’t persist as way too dangerous if it involves going to the hospital’s resuscitation suite. I am going in to visit, shortly, and will update you.
LATER Sunday: rolled up to AMU and was informed Linda had been moved to Redlynch Ward as they needed the bed. Went to Redlynch and they didn’t really know but eventually directed me to Linda’s room. Wrong Linda. They then look up the name and say she is in AMU!
Anyhow, pretty good and whilst I was there Linda was moved to a private room as may be immuno-suppressed due to the chemo so far. They also wonder if there is a blood clot on left lung! Last night they brought a mobile X Ray unit into the resuss suite and the radiographer wanted to remove the various stuck on wires but they refused. So maybe the shadow is a something that obscured the image. So they are bound to re-do scans and maybe yet another CT.
Tomorrow, oncology will need to examine what they propose but evidently continuing the same regime is not sustainable.
Monday, 24 April – overnight was noisy with the machine bleeping and inability for anyone to come and attend to it. You can call for assistance but getting someone is another matter. As I’ve said before it’s at this end of the NHS that things work less well.
Anyhow, the hope was that Linda would be home to the cottage today, but it was not to be. Instead I took in a bag full of edible goodies. They’ve discovered a blood clot on the lung and atrial fibrillation. The latter means there is an increased risk of a stroke and will involve blood thinners for life to go with the other lifelong meds for which a free NHS supply is a Godsend and is yet another side of the NHS that balances the inadequacies. So, Linda joins friends Jeanette, Carol and Terri at Club Atrial Fibrillation! A CT scan late this afternoon and tomorrow an ECG. Oncology will decide what is to happen on the chemo front and the possibility is a reduced dose of the existing drugs. Meantime (obviously) chemo tablets paused.
How all this has come about is, frankly, mind-blowing. I can’t believe that a near cardiac arrest etc. is a mere coincidence. There’s been surprise raised that in going to the hospital we had no idea it was a heart issue and that we didn’t just ring 999. As Lindy said she hasn’t had a heart attack before, and we were simply trying to match the catalogue of known side effects to the symptoms. These range from pins and needles in the fingers to death. Had these symptoms arisen in normal circumstances a tight chest would have caused immediate alarm. We now know that jaw ache, back ache and vomiting are further indicators so no wonder there was alarm at A&E in the very early hours of Sunday morning. Tomorrow another day.
Tuesday, 25 April – the hope is Linda to come home today as was the ambition yesterday. The CT scan did NOT show a clot on the lung. Maybe the one done in Resuscitation Unit in the early hours of Sunday morning was showing one of the unremoved stick-on probes? Who knows?
The procedure this morning was not an (Electro)CG but an echo cardiogram showing if the heart has an irregular rhythm. The operative said nothing jumped out at her, lucky as it was the heart she was examining. It’s all about me (remember?) but my heart is in my mouth often, just recently. Anyhow, she has to do some height/weight calculations but on the face of it, hopefully, okay. Blood pressure sky-high.
LATER: Linda is home at the cottage! Chemo has been suspended and will be reviewed on Tuesday 9 May. Oncology will decide whether to continue with other drugs or reduced dosage of existing or not continue with chemo at all given that it is adjuvant. (The aim of adjuvant treatment is to improve disease-specific symptoms and overall survival. Because the treatment is essentially for a risk, rather than for provable disease, it is accepted that a proportion of patients who receive adjuvant therapy will already have been cured by their primary surgery.)
It seems to be accepted that the condition that arose over the weekend was a side effect of the chemo. The atrial fibrillation maybe of a type that does not recur and Linda can test via her Apple watch as I don’t expect any other follow-up will arise. The blood clot was a red herring (no idea how that got there!). Basically, all a bit vague but the good news, she is home and now a couple of weeks of relative normality (we hope). Phew!
Friday, 28 April - all quiet on the western front
Tuesday, 9 May – the appointment with oncologist today centred on what went wrong and the way forward. The side effect of Atrial Fibrillation (AF) is known but quite rare. He said the last time he encountered it was a couple of years ago as far as his patients are concerned. It’s the tablets that were the likely problem. As to the way forward with the potential AF condition Linda is to seek advice from her own doctor to determine if blood thinners will be needed forever (as was previously suggested) or not. I’m almost a doctor now, so I’m thinking probably not.
The new chemo regime starts tomorrow afternoon. It will involve the same infusion but with a second shorter infusion to replace the problematical tablets which were formerly daily for 14 days from the infusion. The hope is that it will be tolerated more readily. Blood tests generally are within the normal range but this is something that is closely monitored before each round of treatment.
Parking as usual at the hospital was a nightmare with people claiming any bit of space that might conceivably take a car without blocking anyone in. Predicting this, we took the Smart Car but even then I had to eventually drop off Linda at the door and resume fruitless space-seeking. Eventually, I found a yellow hatched area evidently too small for a regular car but ideal for us with that car and adjacent to the millions of unused disabled bays (anybody would think it is a hospital).
Unfortunately, when we got back, we had a note from a disgruntled patient evidently aggrieved at our inventiveness. It got worse. A sharp rap on the window and she was there totally enraged having abandoned her car on the way out and hot-footed it in pursuit of the possible culprits. Basically, it was our first experience of DPSRR: ‘Disabled Parking Space Road Rage’. Tomorrow and subsequently it should be a drop off and pick up only.
Wednesday, 10 May – the chemo went ahead this afternoon with the initial problem that of getting the cannula in that took several attempts and the air of hot air sleeves. No particular problem with the first infusion the same stuff as last time (Oxaliplatin).
As I mentioned yesterday, rather than tablets for two further weeks this was to be replaced by 250ml of another drug (Raltitrexed). Unfortunately, things went wrong almost immediately with odd sensations, feeling unwell and her blood pressure becoming very raised. So they had to pause the drip in the hope of things settling down. Blood pressure took some while to return to more normal levels and the decision was taken to discontinue the remainder of the infusion.
There is a meeting with oncologist in three weeks and the likelihood is to go ahead as this time in the hope that everything is better tolerated. Linda is home now and overall feeling pretty good and ate a nice dinner prepared by moi and not even involving oven chips.
Thursday, 11 May – feeling pretty good today. Linda similarly…
Friday, 12 May – We’ve been monitoring glucose levels a little more closely as readings were creeping up a bit. Last night way over the normal levels. Having under-reacted the last time things were going wrong we phoned NHS111. Unsurprisingly, they did not think it needed immediate attention but to speak to the doctor first thing. We all know that is much easier said than done.
At 08.01 Linda on the phone and after all the ‘go away, use web site’ stuff was number ten in the queue. Once through to the appointments warder she determined that we will get a call from the doctor after the weekend, on Monday. Without doubt, a meeting with a diabetic professional will be needed and we will test several times a day, two hours after meals. The likelihood of additional treatment and further dietary control will ensue. At worst insulin. An hba1c blood test will show the trend looking back and likely way forward. Otherwise, Linda feeling fine as we picked up on this very early since we were kind of anticipating it.
Monday, 15 May – blood sugar readings have been quite perplexing. After topping out at over 22 (UK scale, different in USA), Linda did what she does very well and counted carbs and reduced them. This has had dramatic results in bringing the levels to normal range two hours after eating. The problem with this is that there are competing influences: getting enough calories to maintain weight vs. keeping glucose levels at safe levels.
As expected the doctor has ordered an hba1c blood test and this was done at the hospital this afternoon. Tomorrow morning a meeting with doctor and hopefully the blood test results will be ready. Blood pressure is also too high so the strong likelihood now is an appointment with the diabetic people at the hospital or elsewhere. Meanwhile, close attention is being paid to all these readings and needless to say a great excuse for a spreadsheet!
Wednesday, 17 May – although we haven’t had the blood test results a diabetic nurse called ths morning having been contacted by the doctor. Once again, the NHS working efficiently. Although blood glucose levels have reduced to more normal levels with careful carb consumption, Linda is now to be prescribed insulin. At first, this will be a ‘background’ dose before bedtime and should regulate the blood sugar levels through the day. We will monitor via the finger prick blood tests and the nurse is calling on Monday to see how she has got on.
On a more positive note, Linda is feeling good and we have been busy in the garden. A weekend away in Norfolk beckons.
Friday, 26 May – quick update. All going well. The insulin was picked up on Tuesday this week as when she opened the bag from the pharmacy last Thursday it was’t the insulin but a bag of other stuff and we were in Swindon by this time on way to Norfolk!
So Linda now having one injection last thing giving ‘background’ cover. Glucose levels have remained within normal range and the diabetic specialist nurse is calling next week for a progress report.
A blood test today, seeing oncologist on Tuesday 30 May and chemo on 1 June. Assuming they will attempt the same cocktail as last time (long infusion followed by a shorter one). Last time they abandoned the short one after Linda had an adverse reaction. Maybe they will attempt something different. This will be the third chemo but as the second was different from the first we don’t know if it is the penultimate or otherwise. Originally was to be four sessions.
Friday, 2 June – it was decided at the meeting on Tuesday with oncologist that they would go ahead with the two infusions the same as last time. The difference only that they would slow down both so it didn’t go in too fast.
So, yesterday, Linda went in at noon. The first lot went in okay and then when it came to the second infusion (Raltitrexed) it had time-expired. This stuff has to be used within a time frame – on this occasion by 3 pm and it was after that time. This meant returning today at 11 a.m. for the second to be administered.
The first issue was that they had forgotten to order the pre-meds. Once this came from pharmacy they attempted the cannula. Three nurses tried and then a haematologist. On an earlier A&E visit a similar thing happened and they resorted to a doctor using an ultrasound to find a vein. Trouble is, the cancer ward does not use this equipment and they couldn’t co-opt it in from elsewhere. Thus the procedure was again abandoned.
Apparently, they might now have her in for a PIC line to be put in to cover this and the final chemo due on Thursday, 22 June. Then again, they might not bother as the oncologist on Tuesday was weighing up whether the side effects and issues outweigh the benefits of what is adjuvant (mop-up) chemo treatment after the ‘curative’ Whipple surgery in February.
The once-a-day insulin seems to be working well with blood glucose levels staying more or less within normal parameters.
The good news, too, was that the steroids today have given Linda a burst of energy and she insisted on doing a lot of ironing as we had a double turnover of people leaving and arriving at the cottages today. I also got out of making the cauliflower cheese which was otherwise my gig tonight. Every cloud and all that.
Thursday, 8 June - the hospital never did call about the pic line or re-attempting the second infusion. Guessing they will just try to get a fully successful result on 22 June - the fourth and final round of chemo.
Diabetes has been monitored closely and even with the night time injection is running a little high. I think full insulin is likely going forward. Next Tuesday they are fitting the blood glucose monitoring device enabling sugar levels to be checked with a phone app and no finger pricking. It sits just under the skin and needs to be replaced every two weeks. Incredible what they can do these days and Apple Watch app is on the horizon.
Sunday, 11 June – On Friday the hospital called about 12.30 asking where Linda was. Turns out she was expected at the cancer suite to re-ttempt the Raltitrexed infusion but nobody had told us about the appointment. No letter had gone to the other house as we had been there the day before (and subswquently). So, straight to Salisbury for the remaining time that afternoon and everything went well, got line in okay.
Linda feeling well, Friday and Saturday but today quite wiped out and very tired. This is the first time she has had the full whack of Raltitrexed so nothing to compare it with. Be interesting to see what happens at the end of the month when both lots should go in. They are still intending the pic line, although given they normally do manage a cannula, wonder if this is necessary for the final round of treatment. It only failed last week due to having had the chemo the day previously with all sites they jabbed unrecovered.
Tuesday the diabetes monitoring thing being fitted and Wednesday a cancer support group meeting being organised at the hospital.
Thursday, 22 June – haven’t updated for a while. Linda has her glucose monitor and it is a clever bit of kit avoiding constant finger pricking for glucose levels. Simply place her mobile phone next to the under-arm censor and and it gives the glucose level. If the phone is not nearby it also goes off as it does automatically if glucose levels fall too low which has been happening quite often.
It’s a careful balancing act between eating enough to sustain weight, enzyme replacement Creon capsules so nutrients are absorbed and insulin to counteract carbs and sugars from that absorption. All of this when appetite is often suppressed. The under-arm patch thing is replaced fortnightly.
Chemo has got out of synch due to the issues previously mentioned. The stuff most recently has definitely taken its toll with general fatigue. The next full and final scheduled chemo, two infusions, is Friday 30th. I think it will be hard going for a bit after that.
Friday, 30 June – Linda had her last planned chemo today. They had the usual difficulty with the cannula but ultimately got it in and for first time both lots of infusion were, consecutively…infused! Now a bit wiped out and sleepy and Linda much the same (joke).
The diabetes aspect has been excellently managed helped in large measure by the glucose monitor. Keeping an eye on this via the phone app has meant that sugar levels have been mostly maintained within the required range through diet alone. Linda has been very actively monitoring nutritional intake for many years on another app so this has held her in good stead now it is even more important. We went out for pizza last night with friends so being very carb-heavy a couple of units of insulin did the trick. Brilliant job due to understanding the condition through reading including the current tome Think Like a Pancreas!!
Looking ahead, there will be a blood test in three months, presumably looking at the cancer marker trend. Thereafter, a CT scan one year after surgery so February next year. The hope, of course, to get back to a semblance of life as it used to be. That said, other than curtailed overseas travel, life has been as normal as anyone could reasonably expect it to be.
Thank you to the literally lifesaving NHS in its entirety and to all our family and friends for your kindness through this traumatic year.
Friday, 14 July - since last Saturday Linda has been getting more and more unwell, seemingly the chemo side-affects. So, on Wednesday I called the hospital and she went in to the Acute Medical Unit once again. Eventually a line was put in on fourth attempt as difficult through dehydration. Blood tests and fluids.
There was an adverse result indicating an infection of some sort. She could have stayed in but instead came home to the cottage at 11pm with anti-biotics but to return on Friday. Decent night and feeling a bit better Wednesday and a lot better today and I took her in again.
More blood tests reveal a liver issue so an ultrasound was done and this (on the face of it) did not indicate anything untoward like metastases (thank the lord). She might have seen the oncologist but he went home at 5.30 pm. More blood was taken for more 'fancy' tests so back to the AMU on Monday morning.
Sunday, 16 July – after feeling better each day since Wednesday Linda awoke at 4.20 with a raging headache, stomach pains and dreadful sickness. Phoned the hospital and after some discussion decided that we should go to A&E as very quiet and be moved from there as necessary.
On arrival at 6.45 am, Linda was very sick so taken immediately to an observation room. Obviously dehydrated once again so attempts to get a line in failed even with the ultrasound machine they use to find veins. Eventually they did take enough blood for testing and she managed to sip water and keep it down. At about 11 am the results came back showing some improvement to those taken on Friday (liver function is one not where it should be) so she was allowed home.
Tomorrow back to the AMU where no doubt they will do more blood tests and hopefully also have the results of the more searching tests done on Friday. What caused the problem today is anyone’s guess as the situation is beyond complicated.
Monday, 17 July – Linda awoke feeling pretty good. Dropped her at the hospital and AMU said they were expecting her yesterday. A&E expressly told us to go home.
As usual there was great difficulty getting blood and a line in which was bad because she had to go for a CT scan. I can do no better than quote what Linda messaged to me:
‘Been in CT. The first (ward) cannula blew (ie vein collapsed) when they tried to use it. Put a second one in at CT. Wouldn’t take the pressure of saline wash. Third one wasn’t producing blood but did take the initial saline. Decided to use in CT with contrast injection. Unfortunately, it blew my vein halfway through scan so I’ve two swollen arms one with saline the other radioactive stuff.’
Now, when this all kicked off before last Christmas they were concerned about high levels of CMV (pretty well the entire population has CMV, in low levels, in their system) which Google describes, thus:
Occasionally, CMV can cause mononucleosis or hepatitis (liver problem). People with weakened immune systems who get CMV can have more serious symptoms affecting the eyes, lungs, liver, esophagus, stomach, and intestines.
At the time they prescribed a drug also used for AIDS or drug dependencies. When we saw Mr Pike, the surgeon in Southampton before the Whipple operation, he asked what she was taking drugwise. He hadn’t heard of it and looked it up and was concerned that perhaps Linda had, or once had, a drug dependency! Anyhow, he said to stop taking it immediately.
So, it’s possible that since chemo and weakened immune system, CMV is once again raised. Symptoms match and although, by now, I’m pretty well a doctor in my own right, the bottom line is, we are all guessing.
All day Linda has been in a side waiting room with chairs awaiting a room as she has to stay in hospital for more tests and the MRI tomorrow. I took her stuff in for a couple of hours this evening and a bit after 7 pm she got her private room which are extraordinarily scarce. She was in good spirits especially considering all she has been through. Just need a lucky break and try to retrieve some semblance of normal life for a change. She certainly deserves it.
Monday, 18 July – this morning was truly horrible. The hospital said there is a mark on the liver and hence the need for an MRI scan. We knew there was an historic lesion and nothing to worry about but this was apparently different. Already talking about more surgery. The MRI took over an hour.
Meanwhile Linda has been feeling really well and hungry for the first time since before last chemo on 30 June. Both of us had been listening the same radio station today talking about McDonalds. Unable to eat owing to scan Linda was consumed with hunger! Unusually, McD was on her menu (often lustily on mine) and what’s more she had been online to order a banquet.
Then I get a call to say that they had the MRI results and the mark on liver was, after all, the original insignificant lesion. Talk about a get-out-of-jail type announcement. Euphoria!! What’s more the endocrinologist (nothing to do with insects, apparently) said that he thinks whatever it was causing the trouble is abating and evidenced by appetite return.
So, I picked up our McDonalds banquet to include milkshake and burgers and took it in to the hospital where we had a celebratory early dinner. Donna, the lovely nurse came to do vitals but said she’d return after our festivities.
They await the results of latest detailed blood tests to decide what might need to be done relating to the raised virus levels. Linda remains in hospital for a further night but hopefully home tomorrow as there are some sheets to iron (semi-joke).
It’s a rollercoaster we want to alight but so far clinging on.
Wednesday, 19 July – Linda was discharged from hospital this afternoon. Not really any further ahead with what exactly the problem was despite the massive number of blood tests. The positive coming from the last week is that the ultrasound and MRI showed nothing abnormal cancer-wise.
The next step is another blood test in two weeks. We can then speak with oncology as the assumption is that the raised CRV was a result of chemo. A pretty horrible week.
Sunday, 30 July – pleased to report that each day Linda is getting stronger. She had an appoitnemt with the diabetic nurse at her surgery last week.
The glucose monitor she wears tracks her sugar levels constantly and the nurse was able to access the same information on his screen. This shows the trend and, amazingly, Linda has had no insulin at all in the last four weeks and her levels have remained entirely within the normal range.
I suggested she test it to destruction and this minor encouragement enabled her to have a full pizza, pint and a little red wine followed by tiramisu. Still normal glucose levels.
It's possible that the pancreas is in a ‘honeymoon’ state, post-surgery and chemo.
There’s a blood test at the hospital tomorrow and next day can phone the cancer ward to find the results. Think liver function and the CMV which had been very high at the time of recent hospital admission. As reported earlier, the scans revealed nothing amiss so other than chemo related have no clue why everything went awry.
Thursday, 30 August – overdue an update. We got nowhere trying to find out what the blood tests revealed as nobody with any sense seemed capable or available to interpret them. There’s about half dozen that are outside normal range but some of these are ones which, hitherto, were off the Richter scale. Also, with the wholesale abdominal replumbing, required enzyme replacement therapy etc., who knows what might be regarded as Linda’s normal? Answer: we have no idea.
So, we will wait until there is a face to face with oncology in late October. Meanwhile, Linda is pretty well perfectly well which is nothing short of a miracle. Back to how she felt pre-December 2022. Her diabetes has disappeared and the constant monitor shows blood glucose remaining within normal range. She walks every day for two or three miles, rain or shine. She’s been an incredible inspiration in dealing with adversity.
We’re off to France in our new car for five weeks on 19 September, in a circular driving clockwise loop down as far as Aix-en-Provence and back up the western side seeing friends in Lot and Dordogne. A further welcome return to normaility.
Friday, 1 September – sometimes, often really, we’d like to alight this rollercoaster. After Wednesday’s upbeat report today was an appointment at the hospital regarding genetics. Before this Linda had a questionnaire to fill in and, ostensibly, to delve into whether the cancer was in anyway hereditary, as some are.
It turns out that the reason for this follow up is that the biopsy from the pancreas was examined and this showed a mismatched pair gene abnormality – one of the ones that help prevent cancer in the first place. In Linda’s case it was the MLH1 gene and when one of these genes are mismatched (there are a few others) it is called ‘Lynch syndome’. This increases the risk vs. the general female population (in brackets) by these rates: Colorectal 48% (6%); Womb 37% (3%); Ovarian 11% (2%). So, a MUCH bigger risk.
They needed to do further very searching DNA blood tests that take two to three months for the results, so this was done. Although we had plenty of opportunity for questions, on reflection, we don’t really know what difference the results of these will make. The likelihood, at least, will be the probability of regular colonoscopies or even hysterectomy, essentially prophylactically.
I said ages ago that pancreatic cancer is usually linked to the cancers simply in their appearance and in Linda’s case this was bowel, so chemo followed that general course. It does not mean that cancer is there as well (and there as been lots of scans suggesting all good) but the risk of these other cancers arising is presumably still valid. Seeking a positive out of all of this ‘forewarned is forearmed’.
Thursday, 29 September - just a quick update saying all is well. We have been in France for ten days and will be way for five weeks. We stopped several times overninght on the way to Aix-en-Provence where we had five nights in a super apartment very close to everything. Cycled about, day trips to Marseilles, Avignon (where we obvioulsy surred le pont); Pont du Gard; Nimes. We are now in our favourite apartment in Carcassone; then friends near Toulouse before over two weeks in Dordogne, near Brantome. Again a favourite place looking after a beautiful country home for friends whilst they fly off elsewhere. How wonderful to have another taste of our old, lucky life.
Thursday, 26 October – we got home on Monday night after our 2,000 mile road trip around France. It was a joy to get away after everything that went before this year.
Yesterday, Linda went to the hospital to have blood taken for the meeting with oncology today. The fantastic news is that the blood cancer markers have remained entirely normal since the op in February.
In three month’s time more blood tests and a CT scan. In the interim the genetics team will likely have the results of the DNA test and will determine what additional precautionary steps might need to be taken e.g. a colonoscopy. The only hangover from the chemo is an increasing numbness in fingers and feet which has worsened. This is unusual as such common symptoms usually gets better over time.
Thursday, 2 November- More good health news on Tuesday. Genetics called with results of DNA and this showed not a hereditary gene and found no abnormality. As such there is no Lynch syndrome after all so no more likelihood of other cancers arising as was feared. Phew! xx
2024
Wednesday, 10 January - Happy New Year we hope! All good wwith Linda's health as far as we know. There is a CT scan on Friday, 19 January. We were to see oncology with results of this and blood tests on 25 January, but his now put back to 8 February. So, check in after this and hopefully the results will be as we all want them to be.
Thursday, 18 January - today Linda tested positive for Covid. First time in all these years. I tested negative but think tomorrow I will join the club. The problem was that tomorrow the CT scan was due but I've managed to re-book for 29 January. Lucky that the oncology appoint had already been delayed so it all works out okay for 8 Feb.
Thursday, 8 Feb - parking at the hospital was a complete nightmare so I was glad I dropped Linda at the door. Also, glad to have a 4x4 as abandoned the car on an area few cars could scale! Anyhow, just about got there in time for being called in.
The new oncologist was Dr Sharif (hoping it is Omar, obviously!). A really super-nice chap. He immediately started by saying the scan was completely normal, no cancer. The blood tests, too, entirely normal. These things are very emotional when part of it. Asked about everything else and really felt he wanted to leave no stone unturned and engendered a great deal of confidence. How fortunate we are to have the NHS despite its problems.
Kind of thought the next check-up would be six or twelve months away but everything is being repeated in three months. This to include another CT scan so nothing is being left to chance.
Monday, 1 May - Linda had her CT scan today and next week, Thursday 9th, we see the oncologist for the results of this and blood test. This is a very important day. Linda feels entirely well but there's no room for complacency. I'll update here next week.
Thursday, 9 May – the appointment with the oncologist was at 12.20 and we went in exactly two hours late. He once again started by saying: “the scan and blood tests were good – no cancer.” He said it was the first good news of his day. Must be quite depressing in that role.
He said that something in the peritoneum was smaller which did alarm us a bit as this was never mentioned before but assured us it was not cancerous and just an inflammation or something (rather like the liver lesion that caused concern at the outset?). Certainly, the cancer markers remained at the low level as it has since the surgery. This is always reassuring to see on the graph.
We rather thought the next check would be in six months, but he said to repeat it all in four months and have a telephone appointment with the results. It will be a long while before checks extend longer than six months, if ever. So we breathe again…
Thursday, 12 September, 2024 - Lindy had her CT scan and blood tests ten days ago and the hospital called this morning. The excellent news is that there's 'nothing new' on the scan and blood tests normal. Although there was nothing to suggest anything awry, it is an anxious time each review. The next one repeated again in four months. So we breath again...
