Putting the clock back

I know winter is officially here but it is only in the last ten days that the trees around us and in the woods have seriously given a show of wonderful autumnal colours. Unlike many people I like putting the clocks back to GMT. I remember quite clearly the winters in the experimental years 1968 to 1971 when BST was retained all year, and going to work/college on public transport in the pitch dark mornings. Whilst I love the long evenings in summer when we can be outside, I don’t particularly dislike dark evenings in winter when we have a warm, cosy home and winter food.

I am not sleeping very well at the moment for obvious reasons and the sleep I do snatch tends to be in the early mornings from 6 a.m. to about 8.00 a.m. and it was good to wake at 7.30 a.m. and see it was still light. Ray had been up for some time. He’s not sleeping well either but his pattern of sleeplessness is different from mine. I used to love rising early, not only so that I could miss the traffic on my way to work, but because I could get a few jobs done which meant that when I came home in the evening I could relax more.

The course is going well and the participants are all very pleasant people. They come from all walks of life and various areas of the country and beyond. Often they keep in touch and it is good to hear of their success and to feel part of it. It is keeping Raymond busy and his thoughts away from what is central to our mind. We sometimes talk about it briefly, particularly at night, but everything is pent up at the moment until we have news from the hospital.

Jonathan has been camping in the New Forest this weekend; I had thought he was going to stay near the River Itchen which is why he had wanted to borrow the Jeep. He may have time to pop in on the way to London but although I would love to see him and although it was wonderful seeing Anna for a short visit, the times are bitter-sweet and so much has to be left unsaid at the moment.

Filling the days

We had a relaxing day on my birthday and it was good to see Anna in the early evening. It is about a six hour rail journey so we do appreciate her coming home. She and I spent a happy day yesterday looking for what I wanted for my birthday and it was good to be able to relax with her and chat. She has only just left now and is on her way to Marlborough to spend a couple of days with her boyfriend before returning to North Wales.

Ray is running a course today and over the weekend. They seem to be a pleasant group of people and I went out with them for lunch. The weather now is cool and crisp – very autumnal and there is a big difference to the leaves on the trees now. In the woods there are wonderful colours especially with the beeches and horsechestnuts.

Jonathan and a friend are popping in for a short time tomorrow morning. They are going camping, probably near the River Itchen. Jonathan and his friends seem to relish the cold and I know Jonathan would go camping in January and he probably has. He does have a special sleeping bag and he is just buying a new tent. He has enjoyed camping ever since we took him and Anna to Europe camping when they were children. He is going to borrow the Jeep over the weekend.

It is good for Raymond to be busy as we have both been marking time waiting to know how my health is faring. We go to the Royal Marsden Hospital on Monday and should hear the results of the biopsy. It has been an enormous strain over the last two months as we don’t know what they will do (if anything) if the lymphoma has returned. I know Anna is anxious being so far away; the family have all been through so many ups and downs since my diagnosis in February 2007. As another bone marrow transplant patient said, “I don’t know what it is like to feel normal”.

In the meantime I must just try to fill my days until Monday. I think if the hospital had good news for me, they would have rung but it is no use prejudging the possible results. Waiting is cruel but if the news is bad, then there is no escaping it and that is difficult to contemplate.

My birthday

No matter what is happening, birthdays are always special. I have been thrilled to have so many greetings from here and overseas. Royal Mail even exerted themselves to deliver a card from Australia bang on time.

After opening presents and cards first thing I went to see my mother. I promised to take her to buy some new shoes and as it was raining lightly, I went early so we could park right outside the shop so she wouldn’t get cold or wet. The trip was successful and she is pleased with the shoes and came back to us for coffee and biscuits. It is always lovely to see her on my actual birthday.

The weather has brightened up now which I am pleased about as we are going down to Gunwharf Quays at Portsmouth to look around and have lunch. It can be quite cold there so I’m glad it is milder.

I made sure that I prepared the guestroom yesterday as Anna is coming down this evening. She will be tired after a six hour train journey with several changes but it will be so good to see her. She can’t stay in her flat as she has taken about half of her furniture up to Wrexham.

I am so glad that I can have flowers and plants in the house now. It seemed so strange without them and I have been given two beautiful pink orchids, a cyclamen and an arum lily.

Today’s blog is rather short as Raymond is waiting for me downstairs ready to go out to lunch. We shall try to put the more stressful aspects of our lives on the backburner today and take time out to enjoy ourselves.

The nights are drawing in

I went out quite early for me this morning. I say quite early because I don’t sleep until dawn so Raymond likes me to lie in. By the time I have used all the creams and worked out the medication time is usually getting on. I had a few errands to do but managed to park the car very near to my destinations as I found it very cold.

By the time I came home the rain had really set in and looking outside our back garden at the trees I could see that the wind was really wild. I know we should expect windy weather in October but we were spoiled for a while with unseasonally warm days.

I had a visit today from a good friend. She brought me a beautiful orchid for my birthday tomorrow and it was good to relax and have a natter. She has just returned from a similar North American cruise that Raymond and I took on the QE2. It seems so long ago now as so much has happened since. I am so glad Raymond went ahead when I was only part of the way through chemo and booked a short cruise and the one to the USA and Canada. It gave me something to look forward to during the dark days. They were wonderful experiences and such a joy to look back on, particularly as I relapsed not long after our return. My illness-free retirement lasted two months and ever since then it has been hospitals, procedures and medication.

Tomorrow I hope to have a good day. Raymond and I are each trying to shake off the blues but we have been waiting for medical results for nearly two months and it takes its toll. I hope to take my mother shopping tomorrow morning early and bring her home for coffee and then Raymond and I are going out for lunch.

If Anna is free she hopes to come down by train but it is a long journey. Now the evenings are drawing in it is the time of year to sit by the fire and keep warm in the evenings and that is just what I am going to do now.

Down to earth again

After a full and happy weekend today we are down to earth with a bump. The solicitors for Ray’s accident case seem to work in fits and starts. Now there are witness statements to update and today a request for Raymond’s accounts. I am not sure what they do with them as we have given a copy of the year in question already. So now we are on the back foot.

When I went to the Marsden last week I gave the registrar a copy of my medication requests but she did not give me enough ciclosporin. This is not a run of the mill drug as it is an immuno suppressant so it has taken Raymond some time this morning to convince the local surgery reception that I must have this drug urgently. Fortunately, the people in the pharmacy associated with the surgery are more on the ball and they have promised to get the drug for me by tomorrow. I need 25 mg tablets and take three at a time but I only have a few 10 mg tablets left so I seem to be getting through enormous quantities.

I keep getting surprises about who actually reads this blog. Some are complete strangers who find it because they have lymphoma or are donor conceived, others saw the link in the Daily Telegraph article and Raymond gave several people the website as it was easier sometimes for them to read about what is happening to us rather than explaining and perhaps being a little upset. Sometimes I receive follow-up emails or phone calls which is really nice. I began it because I had to get a number of things out of my system and I didn’t want to be bothering the family constantly, but now it is also a way of keeping in touch.

Not a lot is getting done today. When I think what I used to do in a day when I worked full time! I also used to get rather impatient when retired people said they didn’t know how they found time to go to work. I definitely think it is a case of Parkinson’s Law and we take longer to complete tasks because we have more time available.

Bitter-sweet

There was a real frost last night and it stayed around on the grass for some hours. The deer family have twice been in the garden. They are so silent that you don’t notice them unless you pass a window. By now we always look for them when we pass the window on the stairs and look out of our bedroom window. They have been happily eating the fallers on the back lawn. I have actually made quite a few apple pies and crumbles but I must avoid the bruised fruit. It is lovely to see the deer family; they seem so contented.

I told my cousin in Canada (via email) that we were planning to go to Stockbridge on Saturday and she remembers going there on a visit to this country many years ago. She recalls the water running alongside the road with all the fish.

I have resumed this writing on Sunday evening. We had a lovely time in Stockbridge and as there was an Orvis sale Jonathan and Raymond made the most of it and bought a couple of superb rods which were greatly reduced. It is in the heart of the trout fishing area of Hampshire so there are specialist shops for country pursuits. There is a very good butcher so we were able to buy wild duck and partridges. In the evening we went for a meal as a precursor to my birthday.

Today has been happy for all of us in that Raymond and Jonathan went fishing this morning and brought back four trout. We were able to have my mother over for a visit in the afternoon. She had been out in the morning at a church lunch so she has had an interesting day. She was overjoyed to see Jonathan, of course. She questions me about my health and it is very difficult. I cannot tell her a direct lie but, on the other hand, as I do not yet have any results the last thing I want to do is to worry her. Naturally, as she knows me only too well, she is unsure how I really am and questions me frequently.

We’ve had a good weekend and are trying to make the most of being together but for me it has had a bitter-sweet feel.

The days ahead

I was wrong about Bob. Although he got reasonably positive statements from the specialist registrar on Monday, now he looks back on it he can see she was far from definite, rather evasive in fact. They got the news yesterday that the disease is back and there is nothing that can be done. I know we are aware that the transplant may not be successful before we undergo it, and we are aware that it is our last chance, but it still comes as a shock because all our hopes have been pinned on this.

It is worse too because several months have elapsed and he, like me, has had GVHD which is supposed to indicate the strength of the graft not only fighting the host but fighting the invading disease. Unfortunately, I think there is a window in the weeks after transplant when the immuno suppressant drugs are used to ensure the successful engraftment, when the opportunity arises for the disease to return if it is aggressive.

It is very difficult to think about the future for them both because, in order to be positive about the transplant and give it every chance of success, you don’t really look at what will happen if it fails. I only know that during the past few weeks of worrying I realise I know nothing about how lymphoma would kill me. If it is in the throat I suppose it would constrict and I would have to be fed through my stomach. I just can’t think about the future from a practical point of view until we know.

Although my thoughts are never far from all this, we do have a wonderful weekend to look forward to. As my birthday is next week on the 27^th, Jonathan and Josie are coming on Friday evening for the weekend and we are going to celebrate together. Anna too has a couple of days off in the following week and plans to visit. Surprisingly enough in all this anxiety there is still time to have fun and laugh. We are making the most of the time to be with each other and will love being with the family over the next few days.

The temperature has dropped now after some unseasonal warm weather and I think we shall have the woodburner on over the weekend. It sometimes makes us drop off to sleep in the evenings but it is an indication of how warming, comforting and relaxing it is and that is what we need right now.

Our visit to the Marsden

We had our routine visit to the Royal Marsden yesterday. In the past it has lifted us, good news from consultants, help from the nurses and an exchange of news with other post transplant patients. It was good to see Bob and Julia. In many ways Bob has more problems than I do, but they are not fatal and gradually I think he will recover. However, we went home in a very gloomy mood.

As Dr P is on holiday we saw the specialist registrar with whom we have had several appointments when I first left hospital after the transplant. She was not her usual cheerful self. She was gentle, serious and obviously ill at ease. There was no news about my biopsy and she said it normally took 10 days to 3 weeks. We find this difficult to understand in that my last PET scan was on 6^th September. When I was first diagnosed with lymphoma in 2007 from my first visit to my GP (and there were several) to actually being in hospital having my first chemotherapy session, was 7 weeks.

I asked if the lymphoma had returned what options there were, if any. She became very evasive and said if the disease returns after a transplant then it is very serious. She could offer no valid ideas as more chemotherapy will hardly make a difference considering I had high dose chemotherapy before my transplant. She also said that I might be taken off the immuno-suppressant drugs. However even if the graft were allowed more freedom to be active, I can’t see it defeating mantle cell lymphoma at this stage, if that is what it is. Furthermore, I dread the thought of returning to graft versus host disease at its worst. Of course, this is all speculative but she obviously suspects the worst.

She suggested it would be better if I were not told the results by telephone and that I should have an appointment in clinic to see Dr P in two weeks. So there you have it – two weeks of yet more stress and waiting - in limbo once more. Raymond did some more log chopping this morning and I continue to sort out items for the charity shop and other items for refuse. On one hand we need to talk about our worries, but on the other, we are still awaiting the official results.

My skin has improved quite a lot since the immuno-suppressant drugs were increased although it is still quite itchy (also one of the symptoms of lymphoma). My neck is still enlarged and I am reluctant to go away for a few days in case my throat constricts. It is quite difficult talking to people about what is going on as mostly they expect me to be making progress and they find it disappointing that I am still stuck in limbo. I almost end up with the feeling that they think I am not trying hard enough.

Turning out the cupboards of my mind

Raymond is better physically but we are both in limbo at the moment. I know I am hiding away when I start doing housework. I have turned out numerous cupboards and it is as if I am throwing out a lot of my past. It will be several days before I can even start asking about the result of the biopsy and my transplant consultant goes on holiday for a fortnight from Monday. If the result were to be good then it doesn’t matter who tells me but if I have relapsed then I really should be talking to someone who can advise as to what the next steps are likely to be.

Raymond is going through a lot of pain at the moment. Ours hasn’t always been an easy life but it has been very happy and we had hoped to have this period of time together to be relaxed. Having suspended from my PhD at Southampton, I had hoped by now to be picking up the reins of study once again. I have already made overtures to another university but I cannot realistically apply until/unless I get the all clear. The words of my consultant, “a strong suspicion of disease relapse”, keep entering my mind and prevent me from making any meaningful plans.

As it is my birthday on the 27^th October, I am being asked for birthday lists. But it is difficult to think of anything when I don’t know about my future or my needs. I keep remembering a holiday Raymond and I spent around my birthday four years ago. We went to Vienna and Salzburg, places I had wished to visit for years. It was such a wonderful holiday – just the two of us. This was before my diagnosis of lymphoma and I was in good health, I had just been promoted to Head of Faculty and was enjoying teaching, Anna was settled in at Exeter University and Jonathan was working in the world of television. Jonathan arranged for a champagne breakfast to be served on my birthday and we went to the Vienna State Opera and later to the Eagles Nest.

It is good to have such happy memories to bring out and treasure as well as all of those when the children were at home. As a couple there have been so many good times that we want to hang on to them and have a future together. So somehow we must endure the waiting which seems to have gone on for weeks as the goalposts keep shifting. Ray is going to chop up some logs into suitable sizes for the woodburner and I am going to catch up on my emails and make some mince pies to freeze as we hope to spend Christmas with Anna.

Looking after each other

The catarrh is back and Raymond looks as if he is coming down with something. He has taken a lemsip and is having a lie down. The weather outside doesn’t help. It is really quite cold and very cloudy, altogether not a very cheerful day and we are both trying to keep our spirits up.

I think I am still more calm than before the biopsy as at least that was an active step to take. More and more I realise how the bone marrow transplant was part of an ongoing process. I have to come to terms with the fact that it may be unsuccessful and even if successful, there are setbacks along the road. Most of us are used to operations for which we have to screw up courage, we undergo them and then recover. This process is far more subtle.

The house seems so quiet now Anna has gone. We didn’t live in each other’s pockets but I had forgotten how often we just had a chat. I think she is having to work very hard in her new post but she is equal to the challenge. Jonathan, too, is starting in a new position next week. Although I am sure he could have renewed his BBC contract, he wanted experience in fields other than consumer affairs. He is moving to a well-known documentary company as an assistant producer and is looking forward to the change of direction very much.

We have an elderly friend (in her nineties) who is a former nurse. She is being very strict with us at the moment making sure we both rest and eat well. She has her bag packed ready to come over. Although this makes us laugh, it also is a reality check and we know we must be disciplined to stay as healthy as possible so we can look after each other.

Life goes on

I feel a little better now the biopsy is done. My journey up to London was comparatively easy and it was good to spend an evening with Jonathan. He booked a taxi to take me to the Cromwell Hospital in the morning and it was outside waiting for me when I ventured forth at 5.50 a.m. I don't think I left much after Josie got home; she was working late running an event.

The Cromwell is a BUPA hospital, streamlined and well run. My MRSA results hadn’t come through from the Marsden so another swab was taken which delayed my going to theatre at 8.00 a.m. I was visited in my room by Mr Clarke, the surgeon, and the anaesthetist who did the appropriate checks. I actually walked down at 10.00 a.m. and was prepared for theatre. I think I went in at about 10.30 a.m. and the next thing I knew I was coming round. I had warned them that I have consistently low blood pressure so they didn’t spend ages trying to get me up to a higher pressure than normal after the operation.

Strangely enough although I went up to London armed with lots of paper handkerchiefs and a nose dripping like a tap, my catarrh seemed to have dried up after the operation. I had a sore throat and top lip but it didn’t take too long to get over the anaesthetic. I ordered a taxi for the early evening to avoid the rush hour and by the time I arrived at the flat Josie was already there and Jonathan arrived a minute after I did. I can’t explain how good it was to be surrounded by their care and warmth.

I was relieved to have got over my nervousness and actually I felt a certain equanimity. I have no control over the findings of the biopsy and probably little control over any treatment that may be offered if the results are not good, but I can try to ensure that any future procedures minimise pain and bodily disfigurement so that I can maintain a certain normality. I was talking to Anna today and I think she is very worried, worse because she is so far away and I can’t really comfort her. I am just resuming this narrative after a phone call from her where she has found an article about a woman with a similar throat mass which was treated with CHOP-R. As I have had a transplant I can actually repeat some of the chemo I have had before.

However, this is pre-empting the result; it could be benign but I have thought through all the different scenarios and I feel calmer about waiting than I did before. I cannot let my emotions rule me or affect those around me adversely. Life goes on.

A difficult journey

In an hour I shall be off to London and I have a very sick feeling in the bottom of my stomach. I am nervous about the biopsy tomorrow, not about the procedure itself but the result and the significance of that result for my future and that of the family.

I was going to have my mother over for the afternoon yesterday but St Elizabeth’s said that there were a lot of coughs and colds about and they didn’t think it wise for her to visit because of my circumstances. I missed seeing her but on the other hand I can’t tell her about the biopsy as she would only worry and I can’t look into her face and say all is going well because I just don’t know.

It was good to talk to Jonathan yesterday afternoon and to know that everything is ready for my arrival and they have thought of how to make me comfortable. I know many people who have opted to go to the Royal Marsden for treatment who have to stay in hotels. It is not just the cost but the impersonal nature of hotels which is not what you need when you are undergoing therapy for cancer/lymphoma.

I have always had Raymond with me for every procedure in the past and I am going to miss his reassuring presence although I have been touched by the good wishes of so many people which helps to give me courage. Bob who had a transplant at the same time as I did is also experiencing difficulty. His wife has been a source of help to Ray and me and I think we all have to assist each other through this difficult and sometimes dangerous journey.

ENT

When I was first diagnosed with lymphoma my oncologist said to me, “Whatever you do, don’t stop paying the insurance.” All along the way it has made a difference about choices available and speed. Ideally all this should be available to everyone but we pay a hefty premium each month. Again that is our choice.

The journey to Central London yesterday was much easier than I anticipated and the Marsden has 26 parking bays in the road at the rear of the main part of the hospital reserved for patients and we were lucky enough to be able to use one. My CT scan showing a section of my head and throat was already on the screen when I went into the room to meet Mr C. He seems to be a pleasant, experienced and efficient consultant. He thinks, like three of the other consultants, that the lymph nodes I can feel – including the prominent ones in my neck – have been affected both by the GVHD infection and the higher levels of the immunosuppressantt drugs I have been taking.

Like Dr P. , he thinks that the mass in the throat really needs looking at. I could see it on the scan clearly in the epiglottal region. This has to be examined to see if it shows signs of mantle cell lymphoma. Mr. C said I would need a biopsy under general anaesthetic and that the Royal Marsden was fully booked, so he offered me the option of having the operation done at the Cromwell Hospital, London, on Tuesday. Even then it will be at least a week after the biopsy to receive the results as the tissue has to be examined at the Royal Marsden. Nevertheless, this is as quick as it gets.

We accepted right away even before examining the logistics. The operation is due between 8 and 9 a.m. so I must arrive at the Cromwell Hospital by 7.30 a.m. Ray is running a course on Monday and Tuesday – cancer/lymphoma is a very expensive business so I shall have to use public transport. As a result, it means first class rail travel and staying overnight with Jonathan on the Monday and Tuesday so that Ray can come and fetch me on Wednesday.

Fortunately, the consultants I have met so far have all been very experienced and they do try not to give too much information in a situation which is uncertain. I am in limbo at the moment but I am in good hands. The world of transplants, as I have learned, is an uncertain one. So many diseases are helped by bone marrow transplants, many of which I know nothing about and every patient’s pathology is different so all the consultants, however experienced, are working at the forefront of current knowledge. Without the transplant I would, no doubt, be already dead. I have had months of extra life and I am hoping that I have a future.

A Day Out

Going to the Isle of Wight today was a bittersweet experience. Cowes out of season is very quiet. We had to get a very early fast ferry then bus to St Mary’s Hospital. The doctor who had cancelled the previous appointment examined Ray for an hour and then said he hadn’t finished and Ray would have to come back another time for the final 15 minutes! Ray suggested coming back later in the day as at the moment we have a number of medical appointments for me which must be kept and he wouldn’t be able to come back another time. Miraculously a slot was found one and a half hours later.

As the doctor is for the Defence his report will not be favourable to Ray. It was an odd and uncomfortable consultation and Ray was told he had “illness behaviour” – presumably psychosomatic problems. I am sure our barrister can sort him out.

We had lunch in the Island Sailing Club and ice-cream from Mingella’s so we made the best of the day. I have been so many times with Ray and the children that it was a little sad in some ways but it was good to be together. The rain held off and we were both dressed for the Autumn chill.

I’ve looked up “illness behaviour”. I understand the Research Group is “well funded” – no doubt by numerous insurance companies or am I just being cynical.

The house is very quiet – not that Anna made much noise but because there is one less person here and Autumn is a quiet season.

I’m not looking forward to tomorrow as it is likely to be very inconclusive – also very expensive driving into and parking in Central London but I don’t have much choice at the moment. A London bus is a lot more germ-laden than the sleepy Isle of Wight.

Feeling low

I am feeling very low. Anna’s boyfriend came this morning with a van to move the rest of Anna’s things to her new flat. I find it difficult going up there and seeing it nearly empty.

The post has just come. I receive copies of all the letters my transplant consultant writes to my GP and other specialists. It was difficult to read that he “has a strong suspicion that there has been a relapse”. I know that if a relapse occurs within 12 months of a transplant that there are few options. If a transplant fails it is possible to have another one, but this one hasn’t failed as such; it may just not have prevented the mantle cell lymphoma returning.

This weekend my throat swelled up even more so I am particularly worried. I go to see the ENT consultant on Wednesday afternoon but I very much doubt if he can give me a definitive answer.

Throughout the months since I was diagnosed in 2007 there have always been further treatments and fall-back positions, then there was the hope offered by the transplant. I have pinned everything on the transplant and that hope is easily destroyed. It may be that all of this inflammation is related to GVHD but I am not so sure it is likely as that would happen to everyone else who had GVHD and that is 50% of all bone marrow transplant patients.

For the first time I feel totally helpless. I know this must have happened to other transplant patients but I don’t know much about what happens now. I must just wait for events to unfold and hope against hope.

Autumn's chill

Now I have the cold. As far as the symptoms are concerned, it is only a cold; in my case though I won’t shake it off easily and I must take care it doesn’t develop into something else. Really all this is a flea bite compared with my concern about the possibility of lymphoma returning.

It seems odd that in this day of modern technology, a PET scan can really only be relied on to give a definitive answer when there is no sign of disease. Otherwise signs are shown which then have to be investigated. It is this process of investigation which is so long-winded and causes so much anxiety. For example I am very lucky to have obtained an appointment with the ENT consultant on Wednesday next – even if it does entail driving into the centre of London. However, after the initial courtesies nothing can be really determined until a needle biopsy is organised and then there is the wait for results.

I am certainly not alone in all of this. There is an etiquette to all these appointments which is 19^th Century. I spent all of Thursday afternoon trying to arrange this appointment since the consultant to whom Dr Potter had written wouldn’t have been visiting the Marsden for at least another month. Those who were, weren’t on BUPA’s approved list, hence we have to go into to the Fulham Road branch of the Royal Marsden. I just can’t face the wait. All over the country people are waiting for appointments and then waiting for procedures and then waiting for results. The problem is we are too British and uncomplaining.

Anna arrived early yesterday evening for the weekend. I made an apple pie with our apples and a ‘Mummy’ roast. The latter is a common subject of conversation amongst young people away from home. Her boyfriend has organized a van and is coming on Monday to load up the things she needs in North Wales. I am very relieved because being in a new job she needs to have a proper bed and to be able to cook for herself. Fortunately, she is very pleased with the flat she has chosen and this is a great relief to Raymond and me.

Put down the gloom to Autumn. Outside it is chilly but not raining. The Defendants’ insurers had an interim payment cheque wrung out of them and we are enjoying having Anna with us.