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.