A brief résumé of why Margaret is having a Bone Marrow Transplant
Margaret has been suffering from Non-Hodgkin's Lymphoma (NHL) for the past 13 years. In simple terms, this is basically a cancer of the lymphatic system, which reduces the body's ability to produce sufficient 'good' cells required to fight disease. The lymphatic system is responsible for transporting new cells formed within the bone marrow, around the body's organs, including the blood. Unfortunately, it has always been said that NHL is incurable, and Margaret has been given various control treatments during that period, ranging from radio therapy and chemo-therapy of various strengths and combinations. During the last couple of years, she has been offered treatment based on the recognition of particular cancerous cells by other cell types, which can then destroy them. However, this can only ward off the continual generation of cancerous cells for a finite period (e.g. up to a year), and the treatment is very expensive. Last year, an improved, although no less expensive version of this innovative kind of treatment became available and was offered to Margaret, which involved the cancerous cells also being labelled with a radio isotope. Because this treatment was rather new and needed specialist administration, Margaret had to attend The Royal Free Hospital in London to have this transfused. The results of this procedure have been very good, and due to the expected increased longevity , between 1 and 3 years of remission, Margaret was rather unexpectedly offered an opportunity to have an even longer term disease-free remission, by having a bone marrow transplant. In the early days of this affliction, Margaret had 'stem cells' (cells not yet knowing what they would form into), harvested from the blood and from her bone marrow itself. Her brother and sister were also asked to have their stem cells assessed for a match. Whilst there was no question at that time to have any kind of transplant, this procedure was deemed a future possibility if all other treatments failed. The medical consensus now seems to favour performing such an operation when one is in remission, rather than waiting until other treatments are no longer effective. So, having had the generous co-operation of her sister Janet who lives in Cornwall, and whose previously tested bone marrow was found to be a close enough match, the treatment is planed to commence on April 14th (Good Friday!), when Margaret is to have a weeks course of aggressive chemo', during which Janet will be having home injections of 'growth hormone'. On Wednesday 19th April, Margaret is admitted to isolation ward 5E at the JR Oxford, while Janet arrives as an out patient for the start of stem cell harvesting. On Friday 21st April the transplant will take place. Margaret will be contained within the isolation ward for a period of 4 weeks. Following release she will be vulnerable to both infection and rejection, and special precautions will need to be implemented. These will be detailed on this page as recovery progress dictates.
The Diary (2006)
The following information about Margaret's state of health will be updated regularly. If you would like to email Margaret, you can do so from here by clicking on Margaret@Jenkins-of-Ewelme.org.uk
March 28th - 30th
Janet came to stay, and visited JR with Margaret to have tests, a tour of the facility and an explanation of the stem cell harvesting procedure. She collected the prescription of growth hormone injections, for use before her return on 18th April.
Wednesday April 12th
Margaret is fed up with the JR 'taking the p**s'. A couple of weeks ago during a preparatory consultation, Margaret was asked to fill up to two 1 litre containers over a 24 hour period with a 'sample'. This was duly and warmly returned for tests to establish kidney function parameters. During a visit a week later, she was told that the sample had been "mislaid " and would she mind doing another. Rather cross, she agreed, and in returning it last week, made sure that the staff realised that this was the second time she had gone through this rather awkward process and implored there would be no further carelessness. In receiving a telephone message late on last Friday to contact the JR on Monday, we joked that they had lost the sample again! Would you believe it? That was precisely what they had done! Margaret swore that she wasn't going through the same process again.
Today she went to the JR to have a Hickman line fitted. This is a tube fitted in her chest, so that the forthcoming chemo's, stem cells and other medicinal fluids can be transfused, rather than having to find new veins for each process. Unexpectedly, we have to return tomorrow for it to be checked that it is satisfactorily installed for the long term. You will be interested to learn that after a lot of persuasion as to how important the test results are, and assurances that the sample will be 'personally handled' by the transplant administrator, Margaret has agreed to perform one more time, and hopes that this time, the problem will now be well and truly licked.
Thursday April 13th
Visit to have line checked. It has been rather uncomfortable since being fitted, especially when wearing a bra. It is suspected that this may be due to the amount of sticking plaster used and initial not unexpected bruising. Apart from that, all OK for start of preparatory treatment tomorrow.
Friday April 14th
Following lunch with Hannah and Greg, and on to see Charlotte, Tom and Maisie, Margaret arrived for 3 o'clock appointment on this bank holiday. She was shown to Room 4, which is to be her en-suite room during her 4 week stay. The expectation was that this would have been her first of five daily transfusions of Fludarabine. Indeed that was the case, but probably due to staff on holiday, and the requirement for an initial interview with the duty registrar, we did not get away until nearly 8 o'clock. Although it was offered that the remaining transfusions could be made late afternoon/evening, it was agreed that a regular 4 o'clock appointment would probably be more convenient all round.
Saturday April 15th
A lot more straightforward today. Arrived at 4:00pm and away at 5:30. Apart from feeling a bit 'woozy', Margaret is not experiencing too many uncomfortable effects from this second dose of Fludarabine.
Sunday April 16th
Today was more attuned to the fine Easter Sunday lunch with the whole family in Jericho, than yet another treatment day. Charlotte, Hannah, Greg and Maisie had spent most of the morning on Charlotte's new allotment in Port Meadow doing a little pre-seeding preparation. Maisie greeted "Granma" covered in mud from head to toe, which couldn't have been a better prescribed tonic for Margaret, and everyone else for that matter. The treatment today was pretty straightforward, and we were away within the hour. The same wooziness and tiredness as yesterday, is likely to be par for the remaining two doses of this particular chemotherapy.
Monday April 17th
Its a little surreal going to room 4 ward 5E every day. There has been a different nurse attending Margaret every day, which is not unexpected considering that each day of treatment so far has taken place during a bank holiday week-end. The most memorable thing to report today is that M was suffering from a headache this afternoon. Oh, and I nearly forgot. The final 24 hour 'sample' period started at noon today (see above). Woe betide if this lot gets lost!
Tuesday April 18th
We collected Janet from the Cornwall train at Reading today, and all trooped over to the JR. Janet had her daily injection of 'growth' hormone and Margaret her fifth and last dose of Fludarabine. Apart from tiredness and aching by both parties, all seems to be going to plan so far.
Wednesday April 19th
Rather an emotional day today, since this is admission day, although not until 4 o'clock. It was fortunate that both Charlotte and Hannah had the day off, so the family - including Maisie came over to help Margaret pack. We took the opportunity to go for lunch by the river and we all, including Janet, got rid of half a loaf of bread that Margaret undoubtedly thought I wouldn't use whilst she was away. After a detour via Jericho for coffee, the time arrived for Margaret to settle into her already familiar room. Janet had her probably final growth hormone injection in preparation for the harvest tomorrow. These often cause some uncomfortable side effects, but Janet has been toughing these out, and has been dealing with the whole situation admirably. Margaret was expecting an infusion of Pentamidine today, which apparently helps ward off pneumonia, but for some reason this is being delayed. Tomorrow will be a hard day. Margaret will have Melphalan - the stuff that wipes out the immune system, while Janet has her forced stem cells harvested.
Thursday April 20th
An eventful day to say the least. Up at 6.30 to leave at 7.30 for Janet to start harvesting at 8.30. In the meantime, Janet receives text from Margaret (naughty!), to say she was unexpectedly having anti-sickness drugs pumped in early morning. On arrival at Blood Transfusion Service dept, Janet realised that she'd forgotten to bring the contingency growth hormone injections - required in case insufficient stem cells could be extracted. Anyway, Margaret had visit from Dr Littlewood and his large team just prior to the infusion of the heavy chemo - Melphalan. She has been warned that the side effects are ulcerated mouth and nausea, both of which they will try to control to a minimum. He also elaborated on some of the restrictions that we already knew, but at this point may be worth stating.
All visitors must utilise the anti-bacterial hand gel available from entrance and all over ward 5E.
Overcoats should not be brought into ward ( I guess because probably the only item of clothing that rarely get washed!).
Family visitations only preferred, until level of vulnerability has decreased, and only those without obvious coughs, colds, or other infectious afflictions.
No flowers or pot plants are allowed within the ward.
Janet finished the stem cell harvest during early afternoon, which was her first opportunity to visit Margaret, she had to wait until it could be assessed whether enough had been extracted. Unfortunately, only about two thirds of the required cells had been made available. This meant that Janet was expected same time, same place tomorrow, but was also required to have the contingent dose of growth hormone today. It was fortunate that Hannah had been at the hospital most of the day, and was certainly the catalyst in keeping all patients and her Dad reasonably amused throughout the day. Although I offered, Janet indicated that she would prefer Hannah to come home and give her this final injection. Tomorrow is transplant day, so there is no going back now, so fingers crossed!
Friday April 21st
Janet was duly hooked up to the stem cell extraction machine after a short delay on arrival at 8.30. The machine would be of great interest to anyone having a scientific, medical or technological bent, although donors probably regard it as some kind of robotic monster. It consists of a number of peristaltic pumps (sort of revolving rollers which squeeze and transfer liquid over many paths of captured tubes, and a centrifuge, which separates out stem cells and plasma from the rest of the extracted blood, the remainder of which is then returned to the donor. A strobe can be observed through a small window, where an impression of cells being transferred into three parts can be seen. So, while Janet was experiencing this rather uncomfortable procedure for a second time, Margaret was initially having a dose of anti-rejection drugs and then receiving the stem cells, donated by Janet yesterday. This, together with Piriton and some analgesics, obviously makes you feel a little weird, but nothing that Margaret couldn't cope with. Oh, I nearly forgot to report that M had to move rooms yesterday evening and is now in Room 1. This doesn't have the clean-air filter or bathroom of the previous room, but is larger and conveniently placed right next to the bright and airy day room.
Stem cells are given by gravity unlike the saline and aqueous drugs which utilise, yes, you've guessed it, a controlled peristaltic pump. This is probably because it would infuse too quickly or might cause some damage to those precious cells. Anyway, the first transfer took about 2 hours, and the second, after a period of flushing, about the same. It was good that Janet was able to witness most of the 'transplant' during the afternoon, whilst recovering from her morning's ordeal. Hannah reported later that M had 'put on' 2 Kg throughout the day, which is not really surprising with all the liquid infused plus encouragement to drink up to 4 litres a day. Its a well known fact of course that a litre of water weighs 1 Kg, so it doesn't take a scientist to work out what else Margaret was doing throughout the day! We now know that its a bit of a downhill journey for a few days, where white blood cells (that fight infection) will reduce to near zero, with known side effects of dry ulcerated mouth, throat and beyond. However, she's in very good hands.
Saturday 22nd April
The week-end perhaps presents an opportunity to schedule family visits in a more sensible way, where Charlotte was able to pop in during the morning before going to a wedding, Janet and I turned up after lunch and Hannah and Greg took the late afternoon shift following some energetic hours on the allotment! And Margaret? As well as could be expected, with constant drips of this and that, where a specific programme of particular drugs is being lost in a 'needs must' regime. There are still chemotherapeutic drugs being given, but the 'chemical of the day' seemed to be Magnesium, prescribed to alleviate tingling feelings in the lips and slight trembles. However, even with all these tubes hanging around, Margaret spent some time in the day room, which is a lot more comfortable all round. Margaret's appetite isn't particularly high at the moment, which isn't surprising when you see what cauliflower cheese or gloopy soup looks like! The most important thing is to make sure she drinks at least 4 litres of water a day. This will go some way to help reduce the soon to be expected ulceration of the mouth and downwards.
Sunday 23rd April
Margaret seems surprisingly well today, where I think the Magnesium given yesterday has done its intended job. Since the ongoing chemo is only applied every other day, M thought she was going to have a free infusion day today. Not a chance! Do you remember the pneumonia preventing Pentamidine which was delayed from the 19th? Of course you do. Well, during the nursing shift change this afternoon, M was told that she had to have this during this evening. The other disruptive disadvantage of this unexpected decision, is that she has to be closely monitored with ECG's and regular temperature and blood pressure measurements. So, bang goes that quite evening in front of a spotty hospital TV. Following visits from all the family, but where Maisie and Tom waved from the Car Park while talking with Granma on the telephone, Margaret said a very grateful goodbye to Janet, who returns to Cornwall tomorrow morning.
Monday 24th April
Janet was dropped off at Reading station for her train back to Cambourne at 10:30. A cross country drive to Oxford saw Margaret in good spirits but obviously tired from interruptions to sleep until the early hours of this morning, due to the requirement of infused cocktails of this, that and saline. Some antibiotics have been administered, although Margaret doesn't quite know why, since she doesn't feel too ill at the moment! She had a shower just after lunch, and yes, little bits of hair are now starting to fall from her previously prepared Judi Dench haircut! Dr. Littlewood said that he was pleased with her progress so far, during his morning rounds. So that's encouraging at least.
Tuesday 25th April
Rather an uneventful day today, although that's not to say that Margaret is having much respite from infusions of some preventative or other (sickness, host/donor rejection, water retention), anti-biotic or analgesic. I caught the name of one, which sounds like "cyclo-sporon", and I think is part of the anti-rejection regime, obviously invented by a keen Scottish cyclist! However, she's bearing up to this onslaught and looked surprisingly well today. It seems that the type and quantity of drugs depend on regular measurement and reactions, and it is raised blood pressure with attendant headache that is currently being monitored closely. Margaret was told, during rounds today, that everything continues to be going to plan, and as expected, her white cell and neutrophil count have fallen to unity or below, being an indication of the beginning of the period of vulnerability.
Wednesday 26th April
I guess it's a bit of a waiting game right now, and it's good that apart from the onset of frequent tiredness and fading energy, Margaret is coping well with this expected journey into a physical "Slough of Despond". White cell count today was 0.87, while Neutrophils are down to 0.48. I don't know what the actual unit of measurement is, but not too important if the figures are just regarded as relative. It can be seen from the daily 'blood count' chart that these have been dropping gradually since transplant day +1. I understand that Neutrophils might disappear altogether, while the white cell count could go as low as 0.01. This situation is expected to occur by around Friday, when all the continual chemotherapy thrown at Margaret will have at last done its job.
Thursday 27th April
Margaret wants to pass on her thanks to everyone who have sent cards and emails ( a few 'happy?' tears at the last bunch for some reason). Emails are safer of course, demonstrated by a very sensible and caring next door neighbour who recently popped a card through the door to pass on to Margaret. Within 24 hours, it was realised that their young daughter had contracted Chicken-pox and immediately advised that perhaps the card should not be delivered after all! So, keep the emails coming (just click here - email@example.com ) during this rather lonely time for her, where (for a woman at least) not having the ability to communicate back individually at the moment must be very frustrating! Apologies also, regarding this method of broadcasting news about Margaret. Please understand dear reader, that in taking just under the hour door-to-door each way every day in travel time to hospital, an hour or two at the hospital (to make it worth while for the weekly car parking season ticket!), kind invitations for meals and other domestic and Company tasks to consider, there's not much time left to take or make many phone calls. If you do happen to know anyone who is interested in Margaret's progress, but is is not yet quite up to speed with email or internet browsing, perhaps you would be kind enough to pass on some of this information? My humble thanks.
Dr. Littlewood told Margaret today that she is doing exceptionally well at the moment, and was expecting her to be at a lower ebb than she seems to be right now. The white blood count and the constituent nuetrophils continue to drop, and although not yet at as near zero as makes no difference, are still dropping towards this target figure. Margaret awoke this morning feeling 'quite good' but felt rather disappointed in feeling rougher as the day progressed. This is the time when the bacteria in ALL parts of the digestive system are not kept under control as they would normally be, and although the mouth and throat are not too uncomfortable at the moment, the other parts are feeling the pinch, if you understand what I mean. This means other drugs and more saline to prevent dehydration are being administered to help. Still, nothing unexpected is occurring at the moment, so from an overall perspective, this must all be regarded as encouraging.
Friday 28th April
It's official, Margaret is now fully nuetropenic! This means that today's blood test showed nuetrophils = 0, with WBC = 0.33 - lower than its ever been . The red blood cell constituents (which carry oxygen around) seem fine, having not dropped all that much overall, but platelet count is also dropping significantly. This is what helps blood clot, so no silly under arm or leg shaving for the time being, just in case! Its difficult to predict what is going to happen now, where I expected the week-end to be the depth of the trough, with counts increasing by early next week. However, Margaret was told that more chemo is scheduled for next Wednesday, so what the exact programme will be from now on is anybody's guess (except the consultants' I hope!) The lower part of the digestive system now seems to be under control, although the mouth is starting to dry out and is certainly not crying out for food. What I find amazing, although not for much longer I guess, is that Margaret has retained her hair so far, and looks somewhat out of place compared with the preferred style adopted by her fellow patients. Although very tired and listless, Margaret continues to be bearing up under the undoubtedly increasing strain.
Saturday 29th April
This page was never intended to become what seems to be now known as a 'blog' (web log), but it seems utterly relevant to announce that our favourite eldest daughter Charlotte has attained the ripe old age of 30 today. If she feels old now, how do you think we feel? It's relevant in the context of this bulletin, since throughout the long path of coping with her affliction, there has obviously always been the next target epoch to try and reach in experiencing the evolution of our family. Against a variety of sometimes not too encouraging statistics along the way, Margaret has been determined to celebrate all the important birthdays, graduations, marriages, homemaking, births and other achievements , which both our daughters have provided to make life worth living. Margaret certainly enjoys a good party - but not today unfortunately. Happy Birthday Charlotte. Mum'll take a 'rain check'!
Chris Hatton - her original oncologist for many years - popped in to see Margaret today, to express his interest in her progress and to tell her how pleased everyone is with her progress. M realised later that she had forgotten to ask whether some improvements in what seems to have been expected reactions, might be due to the fact that she had had the first Zevelin (radioactive) treatment in Oxford followed within a year by the stem cell transplant. Slightly surprisingly, today's nuetrophil count showed a tiny increase within, of course, an overall increase in WBC. A nurse said "this sometimes happens", but we shall see tomorrow whether this is just a blip or a trend. Overall, Margaret is feeling 'yucky' but still in control.
Sunday 30th April
I don't want this column to descend into an every day story of village folk, but I guess that when something happens that directly or indirectly affects Margaret's progress, it ought to be reported. Since knowing that we would have to visit hospital every day, and latterly to visit Margaret over a long period, I made a resolution that I would avoid lifts and always use the stairs, as a sensible form of daily exercise. To get to 5E involves 3 flights of stairs of 24 steps each, since we normally start on level 2. If I and others visit the economically advantageous restaurant on level 3, it means a further 48 steps back up. On a bad day, when Margaret wants something from the shop back on level 2, one can feel pretty proud of the physical work put in on one day. Today was no different, except that I decided that I would put a bit more speed into it and sort of jog up. Bad decision, especially carrying a bag full of washing, some new M&S pyjamas, the Sunday papers, and some emails. Half way up the second flight I had to move to the outside track because somebody insisted on driving down on the right! Whoops, tripped up, which under normal circumstances would have been followed by the forward extension of arms to prevent any injury. However, the reaction time of one of them, now weighed down with various stuff for the patient, couldn't prevent my nose meeting the edge of a step four up from my feet! Wow, what a wonderful place for this to happen. Nurses and doctors gathered round in profusion. Look, to cut a lo...ng story short, I was accompanied down to A&E by a couple of doctors/nurses and as far as I can tell, fast tracked to have a cut and bleeding nose attended to. However, I had to be seen by a duty doctor before I could be 'discharged', which required a wait of three and a half hours!! However, explaining that I should have been visiting my wife half and hour ago, they decently agreed that they would call 5E when it was my turn. By the way, A&E is on Level 1, so my punishment for such stupidly (or was it the other driver?) was another 5 flights in addition to the 1 already done.
Apart from the initial concern in seeing my taped up nose, I think Margaret found it all somewhat amusing, which is fine if someone's mishap can act as someone else's tonic. Margaret had a visit from Dr. Littlewood, and is convinced he came especially in to see her, since he was wearing jeans and an anorak?! He again reiterated (is that tautology?) that things are going to plan, but no-one is really explaining what to expect next and when it should happen. It was slightly worrying when she asked whether her previous Zevelin treatment would be having any effect on the progress of the the transplant, only to hear "Oh, you've had Zevelin..how very interesting..I'm not sure". Perhaps how you lead up to a transplant is immaterial, and maybe patients react in so many different ways to this treatment, it is difficult to predict exact behaviour. Anyway, M's temperature was up a bit today, and her cell count down again. Dr. Littlewood said that at these low levels, for all intents and purposes it's zero. She is also to have more of the "Scottish Drug" this evening.
My nose? Well, I was summonsed down 5 flights to A&E where my nose was poked about, cleaned up and strips applied. Then a tetanus plus injection (you never know what might be lurking on hospital staircases). At the moment, I think I must look a bit like Tycho Brahe, the famous Danish astronomer, whose main feature was his tin nose, but that's another story. Yes, and I had to slowly climb back up those 120 steps to say goodbye to Margaret. So have I had enough hospital exercise today? Damn right!
Monday 1st May
Not really the most appropriate day for battle to be joined. But it seems that now is the time for the fight between on the one side, whose natural weapons have all been confiscated and is desperately holding out waiting for some young warriors to reach maturity, against on the other, a gang of parasites, normally kept under sufficient control to actually make them useful. Infecting mercenaries are also banging at the gates, trying to establish new territory . This is the situation in which Margaret finds herself this morning, expressed in flu like symptoms with raised temperature and widespread aches and pains. However, a friendly army is also at hand with various specialist troops geared to ward off any significant breakthrough during this period of siege. So at the moment, it's battalions of anti-biotics, anti-fungals, anti-sickness, anti-rejection and anti-pain. The latter has now been called up in the form of a continuous, but low level supply of morphine, together with an ability to fire additional shots at will when required.
Tuesday 2nd May
Oh dear, not such a good day today. Firstly because it feels like a Monday, secondly because it was one of those days when Margaret wanted something from the shop on level 2 following my breathless arrival, and thirdly because Margaret is, not surprisingly, feeling a little sorry for herself at the moment. The last 24 hours have seen the continuous barrage of some quite unpronounceable stuff including more chemo and even involving sleep disturbing infusions to prevent dehydration throughout the night. This regime has now included transfusions of platelets to boost the ever depleting level. You will remember that platelets are the clotting part of the blood, which if allowed to drop too low, will allow even the smallest sore or abrasion to bleed uncontrollably. The oral morphine has produced some feelings of nausea, so by reducing or even refusing regular doses has left M in a frustrated state of either feeling a bit sick or physically uncomfortable. No wonder there are a few tears and not always fully thought out comments starting to surface. Still, us chaps are, or have been, used to this sort of behaviour before, so experience tells us that the completely irrational feelings that there must be an uncaring reason why she is not getting any other family visits at the moment, are of course a lot of nonsense. It has certainly been unfortunate that recently both Charlotte and Hannah have either had colds themselves and/or close to people or children who have. So, it is a relief to me at least, that this period of voluntary, albeit advised quarantine, seems to be coming to an end, and that it is likely that Margaret will see her sorely missed children again tomorrow. Have no doubt however, the importance of keeping infection away is paramount right now, and there will undoubtedly be a few more days like this before we're through.
Wednesday 3rd May
What a difference a day makes! The chemotherapy is over. The aches and pains have subsided, so apart from soluble Paracetamol, no additional analgesics have been administered today. White cells have increased very slightly, so is the sign we have all been waiting for? Now the hair starts falling fast, and Margaret has requested a full No. 1 cut to alleviate the annoying clumps appearing in her pyjamas, bed, newspaper... If M can avoid those nasty germs always looking for somewhere to take up residency while she builds up a newly acquired defence system, there is every chance she will have overcome the first main hurdle, that of warding off infection. The second main hurdle of course is that of non rejection of the transplant.
Dr. Littlewood came to see Margaret at the end of the day. He's the one of jeans and anorak fame. He came in to say 'farewell' as he was going off to Prague for two days, and would come back to see her on his return. Margaret sent me a text to say he is 'awfully sweet'. Well really, what is the NHS coming to! Jealous? Of course not!
Thursday 4th May
The warmest day of the year so far, also brought a little sunshine into Room 1 Ward 5E. Incidentally, their motto up there is 'Carpe Diem' or '5Eize the Day' - get it? Certainly Margaret's new immune system is seizing the opportunity to announce its presence by raising the WBC and neutrophil count just a little, but it's still well below unity. Although this means that M is still very vulnerable to infection, to be positive about it, by not quite as much as she was a few days ago! This was also indicated by Margaret's general attitude and realisation that the recovery phase is now in the ascendancy. The duty nurse had not been able to give Margaret the haircut she had requested because they had mislaid the hair clippers! It was fortunate that Hannah was able to locate a pair today and gave M the archetypal convicts haircut. The only problem this has caused, is that of stimulating slightly premature thoughts of 'escape' and 'home'.
Friday 5th May
"WHAT! They said you could do WHAT?"
"They said I could come home for a night on Saturday. My white cells have climbed to 1.45 (Normal is 5-10) and Nuetrophils to 0.75, and both are likely to climb even further over the next 24 hours. I have to be back on Sunday evening though, so I can see that nice Dr. Littlewood on Monday morning."
Thinks: 'I wasn't expecting to change the bedclothes 'til next week, and what about all that washing, and the washing up....and all those empty wine bottles. Hell, I'd better start right away!'
Saturday 6th May
As you know, Saturday morning is my 'wash the kitchen floor' day. I always get up at 6:30 on these occasions, just in case something comes up later in the day that needs my close attention. I was interrupted by a phone call from Margaret to say that she would not be coming home today after all!! Of course, this news didn't influence the continuance of the programme of works planned for this morning, although the behavioural status level of these practical tasks was able to be downgraded from Red (Panic) to Yellow (not quite as high as Panic).
Margaret had been given the 'Scottish drug' (Ciclosporin) in tablet form yesterday, and it was intended that this would continue during a home visit and beyond. However, there are now signs of itching and a rash appearing, of which there is a suspicion that this might be caused by this change of regime. Apparently, the quite large tablets have to be quickly swallowed whole, before they start fizzing?!! Anyway, there is a possibility it is this peculiar coating that may be causing an allergic reaction, and the pharmacy is being consulted to see whether there is another oral alternative. In the meantime, Piriton (anti-histamine) is being administered in an attempt to alleviate the effects. However, a rash is also a symptom of Graft versus Host (GvH) disease, which although more than likely to occur at a certain level at some point during the transplant transition stage, needs to be diagnosed as soon as possible in order for the appropriate medication to be prescribed (steroids).
Just a blip old girl. Soon you'll be able to see what a great job I made of the floor, but before next Saturday morning please!
Sunday 7th May
Last Monday I prepared a Roast Beef luncheon with lashings of horseradish sauce and too many Yorkshire puddings, as a sort of rehearsal for when Margaret is allowed to come home. Hannah and Greg were invited as guinea pigs. I didn't get too many insults. Actually, Yorkshire pudding with maple syrup for desert makes a nice change. So I decided to see whether I could do any better with Roast Pork with lashings of apple sauce and sage and onion stuffing this week. Of course, I was preparing for this practice run before I knew that Margaret had permission to come home and had already invited Charlotte, Tom and Maisie and Greg and Hannah (who knows a couple of secrets about how to ensure roast potatoes are just right) to thank them all for the numerous occasions they have been prepared to feed me during this rather disruptive period. I have to admit that yesterday I bought a packet of Sage and Onion stuffing mix (for 4-6 persons), while I was shopping for other things. This morning I just couldn't find the packet again, searching in all the cupboards, the car and even the rubbish bin. Having concluded that I must have left it at the supermarket, I went down to the village to buy another, only to find that they did indeed do such packets, but only for 18-24 persons! However on the understanding that S & O is an important ingredient in such a menu item, it had to be purchased. While making ready the sweet that I had analysed would be IDEAL for 'afters' (Fruit salad, evaporated milk and ice cream - OK the type out of a tin - yum, yum), what did I find in the deep freeze with the ice cream? - you've got it, a small packet of hardened sage and onion stuffing mix! Tom took some photos of us having lunch outside in the garden while toasting absent friends, and sent these to Margaret, who has long concluded that having a mobile phone switched on doesn't actually affect electronically controlled peristaltic pumps one iota.
So, Margaret wasn't able to make it, even as a day trip, due to this annoying and rather mysterious face and neck rash. There still seems to be the opinion that this is not GvH disease, and is likely to be due to the form of Ciclosporin currently being given, which of course you will remember is itself the anti donor rejection drug. Yesterday's WCC was over 2, and neutrophils were still below 1, but climbing steadily. I don't think there can be any doubt that this part of the recovery is progressing very well. If only we can identify the allergen, it may at least provide the opportunity for a home visit or even release on parole on a weekly basis.
Will Sage and Onion stuffing go with the Roast Lamb I'm planning for next week, or will this make a pig's ear of it?
Monday 8th May
It is with a tinge of sadness that I have to tell you that I was eventually able to bring Margaret home today. No, no, of course that's great. It's just that I'm sad that it will now no longer be necessary for me to talk to you, dear reader, about...well, coping. I say 'eventually' because following doctors' rounds early this morning and a phone call to say she would be ready to be picked up, accompanied by a portable pharmacy, around lunch time, it was not until about 7:30 in the evening that we were eventually able to drive out of the hospital campus!! It had been dull and rainy most of the day, practically a deluge in fact, (click on http://www.jenkins-of-ewelme.org.uk/logcharts.htm , where there are two fine examples of the fact that when your barometer starts falling rapidly, it is an indication of the onset of rain...oh, sorry), but the evening was now clear and bright. The smell of flowering rape seed mixed with newly mown verge grass was delicious, and having been away for only a few hours less than three weeks, felt to Margaret as if she was returning from on a long foreign holiday.
Ol' Anorak didn't show, but surprisingly, that didn't seem to matter to Margaret too much, as she is now under the care of the "gorgeous" Dr. Peniket. How fickle can you get? A resident professor (the JR is a teaching hospital with associations with Oxford University) even got involved in confirming that the Scottish drug was in fact the cause of the facial rash, and this has now been changed to what I can only guess is a more 'English' type. The cell counts have continued to climb and are now well on the way to 'normal'. The trend is such that they could even exceed those seen before the treatment started some four weeks ago.
Apparently, the first 100 days following transplant are critical in monitoring for Acute GvH (Graft versus Host) disease (rhymes with GBH, which I guess is precisely what it does). Unfortunately, that's not the end of it, in that after 100 days, the monitoring is for Chronic GvH. So, although Margaret has been released from hospital unexpectedly early, she is still not 'out of the woods', so to speak. Indeed, she goes back for tests on Wednesday, although this will done within the 'day' clinic. This will continue weekly for the foreseeable future. Our own self testing procedures at home are such that if increased temperature, blood pressure, or new rashes appear, Margaret will be immediately re-admitted.
So, perhaps later this week, you may find that the annoying answering machine message has either been replaced with another, or the telephone may in fact be actually answered! On the other hand, isn't technology wonderful, although as an ageing chartered technologist, I suppose I may be slightly biased? Even without the telephone, there are still emails, voice mails, texting and snail mail, all of which have been so much appreciated by Margaret during her incarceration . I can only advise that when M is ready to communicate, she will start to respond to all the emails and our phone bill will undoubtedly revert back to 'normal'!. Visits? Well, family to start with, but when Margaret feels up to it, I would please ask to that the precautionary rules discussed earlier continue to be observed. As a matter of interest, Margaret has lost the immunity (antibodies) produced by all those childhood injections, which during the year of complete recovery, will have to be given again. So, you see that first or second hand contact with children who have just been immunised (MMR +), or are suffering from the usual childhood diseases, would present a danger to Margaret on her continued journey along the path to full recovery.
Just before I sign off, where it will hopefully become unnecessary to reinstate this medium unless there is good reason, I'm sure you would like to know that Janet is also recovering from her ordeal. Either directly or indirectly, she has recently been suffering with a mouth abscess, which I'm sure has not been at all pleasant. All I can assure her is that Margaret's swift recovery in terms of rapid cell generation, is in no small way down to her, and for which we are all grateful. I'll know that the transplant has really taken hold, when one day on being asked what she would like for lunch, Margaret will say she really fancies a Cornish Pasty!!
Tuesday 9th May
All's well, but I'd thought you'd just like to know that Margaret's choice of relaxing TV viewing this evening is....Holby City!!
Wednesday 10th May
I do hope the weekly Wednesday clinic is not going to prove as exhausting as this inaugural one. We chose the earliest appointment we could because you can miss all the school traffic and rush hour, but the consequence is an early wake up call. Margaret is extremely tired and has little energy, so unlike the period when I was visiting daily and doing 'stair work', everything today was slow and a BIG effort. The early appointment paid off though, and Margaret was called in whilst I was still parking the car. On joining her, it was obvious that Margaret's progress is being regarded as somewhat unusual. "So you only had two infusions of platelets while you were here?....mmm" "And you didn't have a blood transfusion at all to boost the red blood cells (haemoglobin Hb).....mmMMmm" "Stick out your tongue please. So you didn't suffer too much with sore mouth and throat" ....(raised eyebrows with a sort of Frenchman's pout and nod). By the way, this doctor is not actually French, but I dread to think what Margaret thinks of him, since even I can see he's quite a handsome fellow. "Would I like to ask any questions? Well, you know that Margaret's white cells are about to get up to, or are are already in the 'normal' zone, meaning that the body is capable of fighting infection" "Yes?" "Well, why is there still such a worry about infection. Is it solely down to a lack of antibodies and isn't Margaret able to make any of her own yet?" He looked at me through those deep set dark brown eyes, and smiled showing his perfectly formed white teeth as if to say "This guy knows how to ask a good question" "You've got it in one. We need to treat Margaret with various antibiotics now against certain conditions we can expect at this stage. If Margaret falls ill, and we will want to know about that immediately, we will identify the cause and will treat it with the appropriate antibiotic. When the blood and immune system is strong enough to tolerate it and worries about GvH are subsiding, in about a years time, we will give the 'dead' protective vaccinations. This will cause Margaret to fight a weak form and produce antibodies to protect in case of further attack. In about two years time we will administer the 'live' vaccinations." "You mean it's like the immune system has been born again, and Margaret will have to go through the same immunisation routine as a young baby?" There was a soft smile and gentle nod of acknowledgement, which I knew meant that he knew that my conclusion was a pretty intelligent one!
The second part of the weekly routine is to go to the haematology day clinic to have 'bloods' taken. This of course is done through the Hickman line that Margaret had fitted at the outset, and I wondered, if this weekly routine is going to continue for sometime, whether the line has to stay attached for a long period. Perhaps that could be my 'intelligent question' for next week?
The third part of the routine is to collect the drugs prescribed this week, from the pharmacy. I know this is a busy hospital with lots of in and out patients, but to have to wait for over 2 hours becomes a bit frustrating when you have other things to do and your partner is not feeling top hole. This was also the problem preventing Margaret's earlier release on Monday. Anyway we had no choice, so I tootled off into Oxford because I had to change my damaged mobile phone, leaving Margaret in the comfortable reception area. Since I hadn't done my daily 'breathless' exercise today, I decided to park in St. Clements, walk over Magellan bridge and up 'The High'. It was a beautiful morning, and Oxford looks its best in the Spring sunshine. Unfortunately, my expectations in visiting the O2 shop to have an immediate replacement phone issued, were dashed by the fact that they would only deal with new phones or 'upgrades' and that accidental damage had to be dealt with on the telephone. I must say that I felt myself saying "I don't believe it", with additional frustration when Margaret tried to phone me while in the shop to ask where the hell I was, and trying to talk to me through the speech distorting speaker which was the cause of the visit in the first place!!
Of course we eventually got home around lunch time, and shattered Margaret went straight to bed. I do hope this routine is not going to generate sufficient points for me to be given automatic membership into the 'Grumpy Old Mens' Club, but the way I'm feeling right now, I suspect I may have been given an honorary membership sometime ago.
Wednesday 17th May
Well, dear reader, if you are still there that is, the main characteristic of this first home period between weekly clinic appointments, has been to highlight the consequences of trying to do too many things that haven't been attempted for a while, and where such activity has been found to be both physically and mentally draining. I think Margaret has found pretty much the same thing too!
It was 'awfully sweet' Dr. Littlewood running the post-transplant clinic today. He was able to report from last week's blood test that WCC (white cell count) was up to 5.7 (Normal - 5 to 10).."Blimey!"…"Blimey indeed" replied the good doctor. Nuetrophils - 2.5 (up from 1.29), Platelets - 181 (up from 142, norm 150 to 300), Hb (Haemoglobin) 10.8 (steady, norm 13 to 16). After a thorough physical examination the consultant exclaimed "Margaret, you're looking fantastic" (Watch it Littlewood!). "I'm sorry to say Margaret, that I won't be able to see you next week, as I am going to India, but come in and see us anyway won't you?" (!!***!!!)
There is somewhat of a difference between reading and being advised that recovery, even without the long list of possible intervening problems, will be a long and slow affair, compared with the actual experience in reality. It has surely been the obligatory entrance hall hand washing for visitors and the extra ordinary attention to general hygienic procedures, that has prevented the ingress of germs and helped Margaret to keep her temperature and blood pressure within check throughout the whole week. However, her energy levels and appetite have remained low, even with the nutritious meals that have been prepared for her. Perhaps one interesting thing to come out of that, and which has been generating a certain amount of analytical stimulation, leading even to the possibility of serious research, is to discover how/why, following years of development of detergents and dishwashing machines, that nothing can remove the remnants of cooked scrambled egg from a plastic bowl? My current thinking is to use this phenomenon as a preventative method to stop barnacles attaching themselves to the bottom of glass reinforced plastic (GRP) boats. With the aid of an industrial sized microwave oven, one simply spreads beaten egg over the hull, and hey presto, in three minutes the job is done. No amount of sloshing about in water is going to remove the stubborn coating. The only problem still to be tested though, is whether barnacles actually have a taste for omelette (patent pending).
If I am currently attempting to act as a pseudo junior 'houseman' at the moment, at least I have two able nursing assistants (one as a qualified phlebotomist - we call her 'The Vampire'), who are doing their best within their own busy lives, to take a little of the strain away from the situation. Indeed, I couldn't have attempted the Vegetable Lasagne or the Cottage Pie recently provided by Charlotte, but have I told you about my new recipe for Ewelme sauce? Well, it’s a sort of cross between an Italian Bolognese sauce (served with spaghetti) and a Chinese 'special minced beef' (served with rice). Why 'Ewelme' sauce? Because of the addition of chopped watercress of course! (See http://www.jenkins-of-ewelme.org.uk/LocationLocation.htm ) The patient has initially put up a voluntary 'Nil by Mouth' notice when this is offered, but the staff think it's pretty damn good! (requests for recipe by email).
So in summary, this week has been one of planning, together with tough training towards achieving a sustainable routine for the chores and shopping to get done, the food to be prepared and cleared, and the washing to be done before things get too smelly. To also be able to sustain the many aspects of running the UK office of a very understanding high tech Danish company, without the presence of one's part time PA, means an earlier start and a later finish, but with practice, the achievement rating of both members of staff is soon bound to begin to rise.
Wednesday 24th May
D'ya know, I thought this week would be rather a boring repetition of last week, and that there wouldn't be anything of much interest to report. Not a bit of it! This week it was 'gorgeous' Andy Peniket in attendance at the clinic. We weren't able to get the early 9 o'clock appointment this week, so 10:00 was our scheduled time. However, because Charlotte had left her bracelet and Tom had left his mobile phone after coming over for supper last night (scatterbrained? - I should say so!), we still had to get up early and take these items to Hannah and Greg's pad, so that Tom could pick them up when delivering Maisie. Complicated eh? Anyway, after reporting that M's appetite is much improved, but energy levels remain depressingly low, Dr Peniket gave Margaret the usual examination. He discovered that the Hickman line/body interface was becoming infected and ordered steps to be taken for the line to be removed immediately. He indicated that it was quite fortuitous that this had been discovered at the early stages, since this could have caused significant problems if left unnoticed. M was certainly aware that the line was becoming rather uncomfortable, but had put this down to laying down awkwardly in bed. So, M has now added a week's Penicillin (any relation to our esteemed doctor?) to the other cocktail of stuff that seems to have no planned reduction at the moment. The removal of a Hickman line is pretty much the reverse operation of the insertion, so for the rest of the morning into early afternoon, the last set of bloods were taken through the line, including extra for infection analysis, and then a specialist doctor performed the rather painful locally anesthetised operation to remove it.
You may now be aware that Margaret is back in the land of the living , since she may have actually answered the phone, or even phoned or written to you dear reader. However, she is still not ready to sit at a PC and get back to regular emailing, up until now at least. So, if you have yet to get a response to one or more of your kind messages, please don't feel that all these haven't been or will continue to be much appreciated. How do you think I feel? M has only had enough energy to briefly read 'her' diary a couple of weeks ago, when I put the laptop in front of her. I've got a feeling that I may be 'for it', when those exhausted little grey cells catch up with the remarkable and approved rate of restoration the cell counts making up the blood are currently exhibiting.
Last weeks count: Hb 11.8 - up from 10.8 (norm 13 -16). WCC 7.02 up from 5.7 (norm 5 -10). Neutrophils 3.55 up from 2.5. Platelets 188 up from 181 (norm 150 -300).
Wednesday 31st May
A definite change in Margaret has taken place this week. I have concluded that this really is the case, by detecting subtle but accumulating little variations in her behaviour. These include such things as small additions and alterations being made to my running shopping list, the positions of items of washed up crockery being moved from where I have chosen to place them for weeks, and even the washing machine being secretly loaded. As the week has progressed, I have been pleased to find that there has been a greater degree of interference whilst I have been preparing meals, finally culminating in completely independent preparation of 'Spag Bol' the day before yesterday. I'm not sure that I want to admit that Margaret's version of my Ewelme Sauce is any better than mine, but on the other hand it tastes a hell of a lot better when you haven't had to make it yourself! The other reason that I deduce that M is taking note of life outside medical procedural boundaries, is to do with emails, where the other day, after delivering a printed version of one just received , I was interrogated as to "Who is this Brenda then? Come on, who is she?" ..."Well, I really don't know dearest, honest. I expect she came across our web site when browsing the Internet, read your diary and decided to send you good wishes all the way from Australia." ..."Oh....Ah yes....perhaps that is a kind thought.... especially when she doesn't even know me...what a nice person?."
Today it really was a record breaking turn-a-round at the clinic. If it wasn't for the fact that M needed a repeat prescription from the pharmacy, we would have been away from the John Radcliff by 10:00. As it was, we were delayed by 40 minutes. It was the 'handsome fellow' who examined Margaret today, who, being a registrar rather than a consultant, never seems to get his name written up on the board as a 'Clinic provider'. If indeed we were originally introduced to him, both of us have misplaced his title within that area of the brain where older people eventually seem to store peoples' names. Anyway, this chap seems to be the one who is always most willing to answer questions. So, purely for your benefit dear reader, I have established that it is the red blood cells that determines the blood group, where the switch from Margaret's original of B- to Janet's of A-, would not take place for about 3 month's. This is because M still retained some of her Hb during transplant, which will not fully disappear for this period. Also, there are many other constituents of blood which are not normally published, including one which I thought might be relevant in Margaret's case with lymphoma. This is the measurement of lymphocytes. However, apparently this is not a too important consideration within the overall white cell count, having a normal value of around 1, which M has easily achieved. We were also slightly surprised to learn today that there is more concern at the moment about Margaret catching something from herself, than from any external source. There are many different bacteria lurking in the gut and similar 'passages' that are closer to Margaret's awakening immune system, then the every day diseases around in our environment. Of course, we continue to practise the usual preventative procedures we are now all getting used to, but it was disappointing to be advised that crowded places must still be avoided for a while. This was doubly disappointing for me when I realised that this also meant shops and supermarkets!
Last week's count: Hb 10.8 - down from 11.8 (norm 13 -16). WCC 8.5 up from 7.02 (norm 5 -10). Neutrophils 5.00 up from 3.55. Platelets 169 down from 188 (norm 150 -300).
Margaret seemed delighted when the good doctor indicated that he would actually take the blood samples today, now that Margaret had lost the convenient affixed line. I cannot be absolutely sure whether Margaret's obvious pleasure at this news was because we would not have to go on to the haematology day clinic and wait around, or whether it was because she was quite enjoying his obviously pseudo "bedside manner". All I can tell you is what I heard on the other side of the examination curtain. "So, how is the line wound this week? I can't quite see it through this...". "Would you like me to take off my bra". "Well, ah yes...if you wouldn't mind?" I'll leave it to you to come to your own conclusions!!
Wednesday 7th June
This has been a week where Margaret has seen a 'sea change' (both literarily and metaphorically) and has even felt strong enough to punch her consultant on the nose!
Energy levels rose to sufficiently high enough levels at the end of last week for a request to be made "Can we get away for a couple of days?" So off we went at the week-end to Somerset, in search of the weir at Porlock?? No, it wasn't a religious quest! We had been through Porlock, on the north coast of Somerset, many times on our previous travels en-route to/from Exmoor and beyond, and on a couple of occasions had thought it might be nice to have a coffee at the 'weir' marked on a page of the reduced scale road atlas of the UK (thoughts of restful babbling water and all that). However, every time we tried to find it within the environs of Porlock, we were always unsuccessful. We even took the narrow coast road west to see whether it was along there, but always seemed to conclude that we had gone too far when reaching the hamlet of West Porlock, turned around again with difficulty, and continued on our journey home with a distinct feeling of failure (and dying of thirst!). This time, we could dedicate a whole week-end to this explorative adventure in an attempt to solve the mystery of the missing weir. So, there we were again in the attractive country town of Porlock, which we had never even walked around before. Since we now had all the time in the world, we decided to find out to where that coastal road actually led. Sure enough, West Porlock wasn't actually a dead end, but do you know what? A mile beyond it was, and the road ended at the sea in a little picturesque harboured village called......Porlock Weir!! Was there a weir? No, there wasn't damn it! I suppose the nearest artefact that might be associated in any sense with a weir was a single and heavy lock gate structure separating the outer harbour from an inner one, which seemed to be completely devoid of water apart from within about an hour either side of high tide. Yes, we, OK I, had plenty of time to study the tidal characteristics, where as far as I could ascertain, used the closed giant water retaining door during heavy weather to protect inner harbour boats, or to flood the inner harbour with the aid of the feed from a small stream, to float previously dry docked vessels. Anyway, apart from the initial disappointment at not finding rushing water, we thought that Porlock Weir was a delightful place, nestling between the steep forested edge of Exmoor and the Bristol Channel, and counted ourselves extremely lucky on a half term week-end to find casual B & B accommodation at a lovely little cottage. Apart from a rather salubrious hotel (according to its inflated room prices) nearby, this was the only place to offer such basic facilities in the whole village. This welcome find was also highly memorable by the fact that you could lie on the bed in our charming en-suite room and actually look out to sea. Would you believe it was called...'Sea View Cottage'? We would ask that you don't spread this information about please, since we would like to go back again sometime, and it would be a great shame if the place becomes overwhelmed with well,.....tourists!
Porlock Weir © Margaret C Jenkins!!
Why am I telling you all this? Well, it is a diary isn't it? But perhaps for not much longer! Margaret has been doing so many 'normal' things recently, and has actually been on-line herself for the first time this week, that I don't think I will be able to get away with making any further uncensored entries on her behalf anymore. After all it's her diary! This has been exacerbated somewhat, when following her conversations with people whom I now regard as having rather let me down, Margaret has been starting to ask such things as "What have you been saying about my bra?". So, what can I sensibly convey this week to indicate that things are still progressing quite well? Our visit to see Andy 'gorgeous' Peniket indicated, for reasons that will be clear shortly, that certain of the ongoing drug cocktail, are 'photo sensitive', meaning that Margaret's face will get red and turn 'rashy' if exposed to direct sunlight. The special scientific experiment we performed this week-end proved that this was indeed the case! It was most fortunate that due to the distinct lack of hair growth at the moment, meant that an extremely vulnerable area of the head was protected with a head scarf. However such rashes are also a sign of GvH, which 'Andy' said was what they wanted to see occurring at a limited controlled level during the next few months. Without this 'stage', would mean that M would also not get Graft versus Lymphoma disease, which apparently is the only long term path to beating Non-Hodgkin's Lymphoma known at the moment. Interestingly, we know that the transplant is working, because if the transplant had not actually been performed following the 'wipe-out' chemotherapy 6 weeks ago, then Margaret would be still yet to start producing white blood cells, and would surely be in a lot of trouble. Also, as a slight contradiction to previous information given, we were advised that even though not yet tested, Margaret's blood group will have already switched to that of Janet. The weekly examination behind closed curtains seemed to be a bit of a 'struggle' today where Margaret later assured me that she had 'accidentally' punched Dr. Peniket on the nose while she was putting her sweater back on. What I can't understand is why Peniket's nose was in the vicinity of Margaret's fist during what I would have thought was just a straightforward post-examination procedure??
So, perhaps I have now completed the task of conveying Margaret's progress while she has not been able to do this herself. But don't stop visiting our web site will you dear reader, because I'm just about to launch a web camera window into our environment (see home page), where perhaps you would care to visit us in a visual sense (dear viewer?), either in snap-shot form or via streaming video. The slightly unusual difference with this web cam experiment is that if you are brave enough (and I can finally figure out how to do it!), you may like to try and control it. Thus for the time being at least, this may be farewell, or should I just say "see you"