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.