Planning

Yesterday was really relaxing. We had a long leisurely lunch out with friends, something we don’t often do, and I’ve been reading. It is good to be able to eat normal food again; both Raymond and I missed the variety of salads we have always had in summer and for me, in particular with a dry mouth, delicious food like tomatoes are a real joy.

Apart from when I have been away on holiday, I have not usually spent very much time doing nothing. There has always been something to do in the house or garden and even when I’ve been on school holidays, it has been a time to catch up on tasks that I didn’t really have time for when I was working. When I first left hospital I had no energy and couldn’t have been busy even if I’d wanted to be. Although I still mustn’t do any gardening or housework, my energy level is much higher now and though it hasn’t returned to normal, I can begin to think about planning my life a little more.

Even though I stopped teaching in the summer of 2008, I didn’t really have an experience of normal retirement. First of all we spent quite a lot of time on various holidays and then by the time those were over, I had relapsed and embarked on chemotherapy and radiotherapy. In fact I did my first half semester of my PhD while I was having chemotherapy.

It was very good having some study and research to do during the first period of chemotherapy but as time wore on the chemo began to have a more debilitating effect and I had to suspend my studies. I think retirement must be planned. I had never intended to stop work and do nothing. Of course, I had tasks around the house and garden in addition to helping Raymond with the courses. I have never wanted to have a vacuous life of shopping and coffee mornings which is why I had hoped to study and carry out reading and research which I had not been able to do while teaching. I feel now that I can begin to think about the future. There is always going to be a possibility of the lymphoma returning but I should like to plan for the best scenario. Normally bone transplant patients have to take twelve months off work, so I am hoping to return to study next February. If I study part time then I shall be able to balance this with spending time with Raymond which I very much enjoy.

Summertime

This is an old fashioned summer. It is a long time since we had such unbroken sunny weather. I can’t take advantage of it as I would normally in that I would have been out in the garden and eating outside for much of the time. However, the weather is warm (great for me as I am feeling the cold so much at the moment) and the days are long. The long days and slow dusks bring the animals to the garden and we are so privileged to be able to watch them. Families of foxes and deer grow up here and return with their young while we watch their antics.

Summer as a season is one of nostalgia for me as I remember the long holidays of childhood. The rowan trees on the lawn are loaded with berries, some orange and other turned to red, and they remind me of holidays in Scotland with the children when they were young. Sometimes we would venture further from the cottages where we were staying, into the more remote areas of the Highlands and would see stunted mountain ash clinging to rocks without seemingly a crumb of soil, bearing those same berries.

I do grieve for our back garden. It is very steep so it is tiered and whilst Raymond always cuts the grass, I used to do all the heavy work of pruning the trees and shrubs plus the inevitable weeding and path control. I spent a lot of time working in the garden as it was quite demanding. Raymond doesn’t really have the time or the inclination but, bless him, he is outside today trying to do his bit. Unfortunately a one-day blitz is not really going to solve the problem but it should make it more presentable. Hopefully by next year I shall be allowed to spend time in the garden and tackle it again.

We had a reply yesterday from our solicitor and it looks as if at long last, Ray’s case for damages against Biffa whose lorry caused the accident, is coming to a head. We were told early on that cases such as this rarely come to Court. Judges in black and white cases such as this are not very sympathetic to defendants who have deliberately procrastinated. So it looks as if it is down to our negotiating team. The meeting is due to take place next month so it could be that this summer is really quite an eventful one.

An eventful day

Yesterday was a day of mixed fortune but one which ended happily. We stayed overnight at Jonathan’s flat to save driving to and from the Marsden in one day because Ray was tired after the weekend course. Our return then was leisurely so it was natural to stop off at Romans Garage between Mitcham and Sutton so Raymond could view the Ferraris, Alfas and Bugattis. He was in his element and as I was sitting in the car, asked if I could join him in looking at what was a unique collection of cars.

We had driven up in the Jeep. As a car its strong points are that it is very rugged. It has taken us along the dirt roads in Finland, camping throughout Europe and is wonderful for loading up with all manner of items when we are going to the boat. It copes with rough terrain so easily but its electrics and locking system are in the steam age. Whereas if you leave a light on or the boot open (with an interior light) in the Mercedes, a safety system opts in and turns it off, this never happens in the Jeep. However, we don’t always want to park the Mercedes in places where it can be scratched so we were in the Jeep.

Raymond came excitedly out to the passenger side and asked if I would like to go in and he locked the car. The showroom staff were very enthusiastic about their vehicles even though we were only looking out of interest. Then it was time to go and we realized that the car keys were locked inside the Jeep. It is not possible for that to happen in the Mercedes but it has happened more than once in the Jeep and as it is so solid it is a car thief’s nightmare. However, having sheepishly admitted to the Garage staff our predicament, they set to and attempted to retrieve the keys while we stayed in the showroom. Most modern cars can be broken into in about two minutes but the Jeep has extra safeguards. However after 20 minutes someone from the showroom presented Raymond smilingly with the keys saying that someone had had a misspent youth and we were after all in South London. We had been having nightmares about going home by train and returning with the spare keys.

We drove home very happily and in the evening were rewarded with the sight of several deer on the lawn and later just two of them under the apple tree being stalked by a young fox who wanted desperately to play. So ended an eventful day.

Salad Days

Yesterday was the day of my fortnightly trip to the Marsden. The Waiting Room was packed with lots of people standing but by now I know most of them by sight. Bob and Julia were there and Bob, like me, was having his stitches out. Now at last I can have a bath or shower without a plastic bag over all the lines.

The removal of the line means that it takes about 5 minutes for them to draw the blood samples for testing instead of the 25 minutes previously where the line had to be flushed and the site of entry cleaned and dressed. I was lucky enough to be seen quickly and the consultant, Dr Mike Potter, seemed to be pleased with my progress. I did tell him I had been ill during the week but was fully recovered and he thought I had had a bug as, of course, I am more susceptible to anything going around.

He said again that he does not want to prescribe steroids for the GVHD as at the moment this is boding well for my long term future. He did raise the possibility of another PET scan in a couple of months as I guess they want to make sure that the activity in the throat was an infection and not the return of lymphoma. There is always a shadow hovering somewhere.

The doctor also asked if I had any holiday plans as I should consider getting away while the weather was good. He said anywhere in England was all right and also France. I jumped at this right away. He explained that Northern France was ideal as it was possible to get back to the UK quickly if anything flared up but also that the Franch health system was very good and everything should be covered by the E111. This was all very encouraging as I have already mentioned to Raymond that I would love to get away and I know he’d like me to go to France with him.

I had some more good news too. I can now eat raw fruit and vegetables provided everything is washed well, peeled where appropriate and all pieces are completely fresh and not too ripe. This is wonderful news and I am celebrating tonight with a salad. As I still suffer from a dry mouth at last I can eat the food that is moist and also good for us both.

Hair

Yesterday we saw Anna off to Oxford. She and I had been out together during the previous week as she was buying clothes for her more professional role. She really did look so striking with her hair up. She is lucky to have a perfect oval hairline so an upswept hairdo doesn’t look too severe.

I have decided to do without turbans and scarves now and it really gives me a great sense of freedom. My hair is still very, very short but since more people have chemotherapy nowadays the general public have become far more used to realizing why someone is wearing a turban or has very short hair.

Last time I had chemotherapy my hair grew back with its natural colour. This time it has been very strange. First of all I gained eyebrows but they were very dark. Gradually these lightened in colour quite without my noticing it until Anna and Raymond remarked on them. On my head I had a very dark short fringe at the front and slightly lighter stubble elsewhere. Since removing my turban I have been able to watch this change also. Basically the hair grows back just like a baby’s and their hair colour often changes as it grows but it surprised me that instead of the roots changing it was right along the hair shaft which is quite uncanny.

When discussing cancer or lymphoma the subject of hair must seem so trivial but regrowth is a real sign of recovery. Lack of hair is really quite humiliating and you can never escape your illness. I can now put my scarves and turbans in the back of the cupboard. I hope and hope I shall not need them again but the more I read about cancer the more I realize that it is not always the immediate death sentence it once was, but more of a chronic affliction.

Progress

Yesterday afternoon and evening I was unwell. I had a severe stomach upset and couldn’t eat. Today I am better so I think it was a ‘one-off’ event but Raymond was very worried as we both know that Graft Versus Host Disease can get worse very quickly. Today as I feel normal it makes me realize just how ill I was when I first came out of hospital as that was a daily occurrence and I have made so much progress since then.

Those stomach upsets did cause me to lose a lot of weight, not only what I gained in hospital because of the fluid intake via the drips, but an additional stone. Anna was sorting out some clothes for the charity shop and gave me a skirt she no longer wears which was too good to dispose of. She is shorter than I am and it fitted on the hips but is too large on the waist so that was a warning. I’d like to get back to about 8 stone as I need all the strength I can muster to cope with the months to come.

I went to bed early yesterday but couldn’t help noticing the fox cubs on the lawn at dusk. There were three of them rolling around and play-fighting, such a wonderful sight.

I’m certainly glad I am better today as Raymond really needs to concentrate on preparing for the course. I usually do some work in the background as far as refreshments and preparing the wedding dresses and flowers for the wedding element on the Saturday. However, we have been doing it so long it usually goes like clockwork.

Anna is running a summer school for Continuing Education at Oxford University next week so she, too, has been very busy. It is a slightly nerve-wracking time as people are flying in from the far flung and she feels a real sense of responsibility for its success. I know from her preparation that it will be and it is another addition to her CV.

Another milestone this month

Another milestone. My hair has grown enough for me to be able to go without a turban at home. This hot weather has meant it has been difficult sleeping with extra head covering so I am very pleased as it is another step towards normality. It is still a little too short to appear in public like this. When my hair grew back after my first bout of chemo three years ago, a similar thing happened. This time it has grown back darker than before but when my eyebrows grew back they were dark at first and then lightened without any help from me.

I have just interrupted my blog as Raymond has told me there is a stag in the garden. At this time of year they come in day and night. The other day I was sitting reading downstairs when I looked up and saw a fawn staring at me. Its mother and sibling were also on the patio immediately outside our window and didn’t seem the least concerned.

Today is very still and warm. Normally I would like to be sitting outside reading and even more normally in the past I would have been outside doing some gardening. It is frustrating watching all the weeds growing but Raymond can’t do everything. Today I am not even sitting outside reading either but I am summoning my strength to write a letter to Raymond’s solicitor about his accident. Raymond has put down the main points and has spent yet more hours doing calculations about the business losses. The legal team seem to work in fits and starts and then they demand a lot of answers from us which usually take considerable time often at inconvenient moments. I wish they would work a little more consistently especially as we are now in the fifth year since the accident.

This is the busy period of the month as Raymond has a course starting on Friday. He usually enjoys them and invariably the people attending are interesting so although it involves quite a bit of preparation it is rewarding.

Dry mouth

I have Grade 1 Graft versus Host Disease; this means it is relatively mild. Grade 4 can be fatal. When I read about the symptoms I noticed one was “dry mouth” which is what I have. On paper these words seem very mild and it is certainly not a painful condition. In certain circumstances it could be almost comical. I have no saliva so more than a few minutes without water or another drink means my mouth becomes impossibly dry and my lips curl back on my teeth which so that it is difficult to drink without spilling the liquid. I really must look a sight like that so my constant companion is a bottle of water.

The irony in all this is that we live in an area with lots of fruit farms and farm shops with pick-your-own strawberries. When you have a dry mouth you crave juicy foods such as strawberries, mangoes, melon and raspberries, all in abundance now it is summer. Unfortunately, I can’t eat any of those in their raw state. Post transplant patients have to avoid raw fruit and vegetables which in summer also means no salad.

No saliva means having meals with plenty of sauce. A sandwich is too dry and cake is impossible. It will be a long time before I have any nuts or crisps. I can live without the latter but fruit is something I really do miss. We have another problem if we are out all day at the Marsden as it is natural to go to the café for a sandwich for lunch but this is impossible so mostly I go without.

Dry mouth is an inconvenience but I am sure it will go away eventually but it is symptomatic of a lot of the problems which cancer patients have. We tend to focus on the main ones, quite naturally, particularly where they involve pain but most cancer patients you will encounter have a host of other problems. If you see someone with their lips curling back on their teeth it could be me or another post transplant patient.

The Hickman Line is out

The Hickman Line is out but it wanted to stay in. I was glad I had an extra two shots of local anaesthetic, the previous four not being sufficient in such a delicate area since the line had settled into the flesh and a lot of pulling and twisting were needed to remove it. I studied the ceiling tiles but 35 minutes later it was gone.

All this took place in the Minor Procedures Suite at the Marsden where I had previously had my bone marrow biopsy. Cancer is something of a closed world. We all know about chemotherapy as a treatment but before we enter this world either as a patient or partner/carer, we are unaware of all the other treatments and tests which the patients undergo. All around me behind closed blue curtains other cancer sufferers were stoically facing pretty unpleasant procedures.

Behind or alongside so many of us cancer patients are our partners who sit with us and wait in interminable waiting rooms trying to lift our spirits, listen to and remember the advice from doctors and who drive us to our appointments when they are often tired. Those of us who are parents know how we would so much have liked to have exchanged places with our children when they were ill and when it comes to treatments, so often our partners would prefer to bear the pain themselves than watch us go through it.

It is Ray who fields the telephone calls, going into detail with true friends and relatives but fending off the merely curious. This week involved two return drives to the Marsden despite his being tired after coping with my sleeplessness resulting from my tortuously itchy skin. I am so glad he can balance things with running the courses and looking after the boat. Both provide opportunities for his other interests and talents plus encounters with people who are not cancer sufferers or medical staff. When we married all those years ago neither of us could have imagined the situation we would be in now but thankfully those good years have been excellent preparation.

The Hickman Line is out and that is one more milestone to recovery.

Royal Marsden visit

Going to the Royal Marsden is always interesting. If I am lucky I meet people who have also recently had transplants and can compare notes. Yesterday Richard and Bob said that they had both got Graft Versus Host Disease (GVHD)and because they have had other complications beside their skin, they are on steroids. We all found we feel the cold abnormally and our partners this hot weather are sweltering as we beg for windows to be closed. We have found our sense of smell and particularly taste has been impaired. We can look forward to a food we know well but when it arrives it tastes nothing like that which we expect.

Richard has lost three stone in weight. Since coming out of hospital I have lost one and a half stone but I put on half a stone whilst I was at the Marsden because of all the fluid drips. I think my weight has settled now but I can’t eat much at mealtimes.

When I saw my consultant he was very pleased with how I seemed. He was glad that the GVHD had occurred as it meant that the graft would also fight the lymphoma, and also relieved that I had no other serious complications. I explained how itchy I was since the eczema was now all over and he asked me if I would like some steroids. I was rather reluctant as I wasn’t sure that the side effects of the steroids weren’t worse than the itching. The consultant also picked up on the fact that it seemed like a backward step going back to the immuno-suppressants. I decided I would put up with the itching a little longer in the hope that ultimately it will all settle down. Steroids have quite serious side effects for me including insomnia and dreadful nightmares when I do sleep. Perhaps it is a good thing I do feel the cold as in this hot weather I am wearing trousers and long sleeves to cover my unsightly rash.

I shall be returning to the Marsden on Thursday. Richard has just had his line taken out and Bob had his removed on Monday. We couldn’t get a Monday appointment as they were too busy, but my Hickman Line is coming out on Thursday. It has served its purpose well, particularly in hospital, and I shall not like the bothersome trying to find a vein to remove blood when I go for my appointments, but the line is now an inconvenience and since it was blocked last week is nearing the end of its usefulness.

Heatwave

This has been a largely uneventful week, mainly because Raymond was in France and I tend to do things with him. We did have a pleasant surprise yesterday as Jonathan and Josie rang to say that they would like to drop in on their way to camping in the New Forest. They weren’t able to stay long but it was lovely to see them. Jonathan was quizzing me about what I thought of Moneywatch. I notice in the credits that he is the only named researcher.

They certainly chose the perfect weekend for camping as it is very warm and still. Their camp site allowed them to have a camp fire so they took a few of our logs with them. They seemed to have enough food for a barbeque banquet but then that is what camping is all about in summer. I felt quite nostalgic for all the times we camped on the continent when the children were small.

The hot weather at night is quite difficult to cope with at the moment as my skin is so itchy and dry. I long for some cooler temperatures but I know this sun is such a bonus for so many people, particularly if they are taking their holidays in this country. It is a long time since we had such a prolonged spell of good weather.

Some of the other symptoms of the graft versus host disease are also a little difficult to cope with so I hope the Marsden can offer some solutions on Monday because I think this is going to be a long haul.

The need for a break

Raymond is back this morning after a very short break in France where he has been working on the boat. He has to get on with the refurbishment as the boat is out of the water and there is a limited time it can spend on the hard. I have missed him and would normally have gone too and we would have gone for a longer period. Usually we spend some time exploring the region and I am quite happy reading while he works on the boat varnishing etc. However, I can’t go to France yet until my condition becomes more stable.

We have some friends in Carentan who have a gite and when the boat is out of the water we can stay there and it is very comfortable. When I think of the people we know in Carentan, our walks and the wild life I feel I miss it very much.

I hope we can get away for a few days in September once we know how the graft versus host disease is progressing. I would love to have a break and change of scene. This time last year Anna and I were in Ireland staying in a cottage belonging to a friend of hers. I had just endured six months of chemotherapy, a period of waiting to find a bone marrow donor, and the bombshell about my conception. So I really needed to get away. It was a wonderful week despite the weather which really recharged my batteries. There is always an element of risk in going away when you are undergoing hospital treatment, however this has to be weighed against the benefit of a change of scene, time away from the business and new places to explore.

A balancing act

In February this year I had a Hickman or Central Line inserted so that drugs and transfusions could easily and painlessly be given. It has proved to be a real boon. However, it needs to be flushed every week to avoid infection. When I was going to the Royal Marsden on a weekly basis, this was done when the blood was taken for testing prior to my seeing the doctor. Now that I am going to the hospital fortnightly, the line is flushed by the community nurse.

This has been done quite successfully but I had a different nurse today. She couldn’t flush any of the lines as they were blocked. In fact one was blocked last week when I went to the Marsden. She rang the hospital who said I could go in today if I was worried. As I haven’t got any other symptoms like a fever and there is no sign of infection at the entry site, the nurse confirmed that it would be all right to wait until I go to the Marsden on Monday for my regular appointment. The community nurse did say that if I was experiencing a blocked line on a regular basis, it might be that the valves were wearing out and it was a sign that the line should be removed. I would like this as it is beginning to chafe my skin particularly in hot weather.

I have used so much of the moisturizing cream I was prescribed by the Marsden that I think I am going to run out before Monday. It is quite a performance in the morning and evening but the rash has spread everywhere and only my face and feet are clear. Some people have to put up with eczema all their lives so I do sympathise. I’d rather put up with the rash for a time than go on another drug regime which may give me even more unfortunate side effects. It is something of a balancing act.

Sunny days

The weather is still fine and sunny. It has been a few years since we had a similar spell of warm weather. Last year it rained most of the summer just as many more people than usual were trying to spend a holiday at home.

The deer are very apparent at the moment. There was a doe in the garden this morning eating away at the flowers and over the weekend the whole family including the two fawns had a lovely time in the back garden. It is wonderful to see the fawns trying out their legs for speed.

My neck is very fiery at the moment as the graft v host disease eczema has spread. It is quite uncomfortable but I am inwardly stronger so I am coping quite well. It makes it easier for Raymond to go to France for a couple of days if he knows I am all right. He has some cleaning to do on the boat  before the new fuel tanks go in.

I am looking forward to seeing the BBC programme Moneywatch this evening as Jonathan has been working on it as a researcher for some months. He returns to Rogue Traders shortly for a while but this time as an assistant producer. When you hear the vast salaries of some of the BBC executives it is galling since most of the people who work for them are on very short-term contracts with no security.

I am so glad I can read again. I am making the most of this opportunity but I am beginning to feel I need to use my brain once more. I have never had such a long period of inactivity but physically I am only just beginning to regain my strength. There is a long journey ahead with lots of difficult symptoms to cope with but I am feeling more positive about everything.

A good weekend

Today is the fourth anniversary of Raymond’s accident. We are still no nearer to getting a date for the hearing. It is highly likely that the solicitors will prefer to settle out of court but the fact that it drags on and on is very discouraging and certainly doesn’t help to convince us that British justice is particularly fair to the victims.

Waiting and being passive whilst others are in control is difficult for most of us who have been quite active in our careers and daily lives. Occasionally in Raymond’s case there is a flurry of activity and then it all subsides again. I feel similarly passive in the way I must just wait and see how this graft versus host disease develops or gradually disappears.

Although physically I am on a plateau, I am beginning to feel more positive mentally which I think is something of a relief not only to me but the family who are not used to my being passive and inactive.

I am pleased that Raymond’s course is going so well. Somehow when people have travelled so far to get here (in this case Slovakia) we feel very responsible that they have a really fulfilling experience. They photograph a variety of people including on this occasion a young boy of just under two years of age who was absolutely excellent.

This afternoon I am looking forward to the Wimbledon Men’s Final. I have been a fan of Wimbledon since I was a teenager and have been lucky enough to attend on several occasions. It has been lovely to have the time to watch the matches on television without feeling I ought to be doing something else. When I was at school Wimbledon fortnight always coincided with school exams and the enjoyment was always tempered with a little guilt that I should have been revising.

Anna returns today and I am looking forward to seeing her. Altogether it has been a good weekend.

Coping with graft versus host disease

It is quite tricky coming to terms with the fact that the bone marrow transplant which aims to give a long term cure, brings with it symptoms I didn’t have before the transplant, such as changes in my mouth. My mouth is perpetually dry and my taste is altered. I always drank Earl Grey tea but now dislike all tea. It can be embarrassing to accept food when out with family or in a café which I then find I don’t like when formerly I would have enjoyed it. I have managed to stabilize my weight loss but not really to increase my appetite.

From my research I think my graft versus host disease is probably the chronic version. At the moment it is comparatively mild although the eczema now covers most of my body. It can last several months or even years but we won’t go there. So many people manage to cope with the most difficult disabilities that I must learn from them how to cope and rise above them.

Yesterday was a little cloudier and we finalized the arrangements for the course. The Slovakians have arrived and all seems to be going well. As ever I have played my small part but mainly I have indulged myself by watching Wimbledon. It is a luxury to be able to watch matches as they are happening which I couldn’t do when I was working.

Looking outward

I am trying to get used to my new regime of lotions and potions to treat the eczema brought on by the graft versus host disease. I am just glad that I don’t have to get out of the house early as I used to when I was working. The warm weather hasn’t helped but it is so good having a long spell of sun as it does lift our spirits.

I must remember next time I am at the Marsden to request the removal of my Hickman Line as it has served its purpose. Now with the skin rashes it is awkward to accommodate but has certainly been useful for when blood has had to be taken and transfusions received. However, now there is an increasing risk of infection so I would like it taken out.

Raymond is busy preparing the course for the people coming from Slovakia. He is also planning to go to the boat next week to prepare for the new tanks to be put in. Having been to a crime scene last weekend, Anna is off to Stafford on Tuesday and I am conscious that I am the only one who is not busy. Having had a very busy life, this is strange to me. When I first came out of hospital I was incapable of being busy anyhow as my concentration was very poor. I know that my energy levels are still lower than normal but I am conscious of being more outward looking now and my concentration has improved enormously. Since the onset of graft versus host disease, ironically I am more positive so I hope I can expand my world a little now.