Moving the goalposts

Raymond has a cold and is feeling under the weather. He is trying to keep busy but I know my recent news has upset him. He is so supportive and tries to be positive but it is so difficult when the goal posts keep being moved. I am waiting for a letter from the ENT consultant who is the only one who can really determine whether the lymphoma is back. In 2010 you wouldn’t expect to be relying on the post for making urgent arrangements. I try to keep cheerful. Dr Potter says it is rare for lymphoma to return when the GVHD is so active but “it does happen”. I have a horrible tendency to be in the rare category – Mantle cell lymphoma is rare and even rarer in a woman but that’s what I’ve got.

I too am trying to keep busy by doing fairly meaningless tasks like sewing on buttons and filing. I can’t cope with anything that really requires deep thought but I don’t want to just sit around worrying. I can’t even bear to think how a needle biopsy is to be done on my throat. However, all types of cancer bring with them so much discomfort, pain and indignity that my threshold of tolerance for these has changed considerably.

Today is wet and chilly but more bearable than previous days when there was a biting wind much more reminiscent of winter. However, Raymond tries to keep the house at a good temperature so I don’t have to wear too many layers of clothes which make the eczema worse. As Anna will be returning this weekend to collect more belongings, I have been thinking of cooking some warming comfort food. At the moment she has no pans with her so I think she is buying a microwave so she can cook at home.

In many ways I think we have taken for granted the company and support of our children. We have been very lucky. When Jonathan and Josie got together they lived in the flat in our house and when they left in 2007, Anna returned from Swindon and also lived in the flat. This meant independence for them but company when wanted.

Raymond and I are getting used to having the house to ourselves. Fortunately, we are both at home now. It was more difficult for Raymond when we were all out at work/school etc. I am desperately hoping we can have time to enjoy this more tranquil period of our lives.

Wait and see

We’ve just returned from the Royal Marsden. There were several changes of plans. First of all Ray got a telephone call from his solicitors to the Marsden as they knew we would be there. The Defence’s orthopaedic surgeon has hurt his foot and can’t see Ray for his appointment tomorrow. How ironic that despite the inconvenience to us, it is they who have postponed, particularly in view of the very tight time schedule now set by the judge.

This changed everything as it meant Ray could stay overnight, attend the Marsden with me today and we could drive back – much more convenient than his having to return for me on Wednesday. We really enjoyed our stay with Jonathan and Josie and he received some excellent news over the telephone which we celebrated with champagne but which I can’t talk about just yet.

We were very conscious that it was Anna’s first day in her new post and in her new flat. She hopes to return this weekend to pick up some more belongings and work out what she will take back in a van to North Wales later on.

I had the usual blood tests and saw Dr Potter who is now suggesting an ENT specialist will be needed to examine my throat and possibly do a biopsy. After inhaling pentamidine I went to have a quickly arranged CT scan which Dr Potter hopes can throw more light on the appearing and disappearing lymph nodes. I am more worried about my throat and so is he. I can now feel a lump and I am not happy. I shall be glad to have this properly investigated.

Today I saw the consultant dermatologist. He confirmed that the skin rash is caused by GVHD which also upsets the lymph nodes. He suggested fine-tuning my current ointments etc. and not doing anything until we receive confirmation from the ENT specialist as to whether the lymphoma has returned. If I am clear he will arrange for me to have ultra violet treatment in Southampton. Once again it is wait and see time.

Family life

Although Anna spent three years away from home while she was at Exeter University and a further year at Shrivenham Defence Academy while doing her Masters, somehow her move this morning seemed much more final. Everything has happened in such a rush that she will only get the flat on the day she starts in her new job. So she took with her as much as she can physically carry to get herself through the week, then she will organise a van to move everything. A few days in the new flat will also better enable her to know what she needs. I think we all felt that it was a momentous move. We had champagne yesterday to celebrate the start of her new career and in so many ways we are happy but there is, as I look at the flat in our house without her, a sense of loss which every parent can understand.

Yesterday I had my mother over so she and Anna could see each other before Anna went. There will be fewer opportunities for meetings as North Wales is awkward by train and although the route by car looks all right on the map, any journey that goes within twenty miles of Birmingham is liable to be held up. My mother is very pleased that both Jonathan and Anna are in interesting careers and loves to see them.

Although I have two days of hospital appointments ahead, I also have the opportunity to stay with Jonathan overnight for two evenings. Poor Raymond has a lot of driving ahead which will be tiring after the course, as he has to come back to attend his orthopaedic appointment on the Isle of Wight.

The best cure for my medical uncertainty and missing our offspring would seem to be keeping busy. As we suspected somehow Anna’s rabbit, Starsky, is not going to be moving to North Wales although he will be going there on his holidays when we visit, or if we go to France or elsewhere. Animals whether domestic or wild seem to give us so much consolation. Yesterday the deer family spent the late afternoon and evening in the garden. As they were there again in the morning they could have been there all night. It somehow seemed significant that it wasn’t a solitary deer, but the whole family.

Busy days ahead

We are keeping our fingers crossed that Anna is going to get the flat she wants in a village just outside of Wrexham. It is modern and spacious with two bedrooms so we and her other friends can visit her. Hopefully, all the paperwork will be done|

by this weekend. She will be staying with friends for a couple of days and she starts the new semester at Glendwr on Monday.

We have a busy few days ahead. Raymond begins a three day course tomorrow so is rushing around today organising printing and meeting course attendees. On Monday I have an appointment at the Marsden so Raymond will drive me up. I am hoping to stay at Jonathan’s as I have an appointment with the dermatologist on Tuesday. However, the Defendants’ insurers want Raymond to attend a medical appointment on Tuesday so it looks as if Raymond will have to drive back home on the Monday when he will be very tired.

The insurers have made the appointment both difficult and expensive. It is in Newport on the Isle of Wight at 9.15 a.m. This means he must take a car to drive from Cowes to Newport and the crossing from the mainland is very expensive. He hopes to come up to London to pick me up on Wednesday as I can’t use public transport.

Still we did have a very welcome break from the hospitals while we were in France. Hopefully, the CT scan will be carried out soon so that I can begin to make more plans about the future.

Seizing the day

As I walked down the drive this afternoon I could feel the acorns crunching beneath my feet. It was sunny and there was still some warmth but just a hint of chill air plus that unmistakable and indefinable smell of autumn.

It had been the same the previous night. I’m still not sleeping because of my skin (thankfully I see a dermatologist next week although I am a little cynical about holding out too much hope) and because of that I was conscious of the fog horns going on all night. They were not loud and not very near and it was mainly sea fog but nevertheless this was yet another sign of the change of season.

Lying awake in melancholic mood I could not help fingering the swollen gland in my neck. I can’t pretend I don’t worry about “the signs of activity” on my PET scan. Waiting until I have a CT scan and possibly a needle biopsy is very difficult. I have faced the prospect of death a few times in the last few years so I ran through the plans for looking after my mother and my own affairs but to be honest I did an awful lot of tidying up my life before I went into hospital so I got bored with too much angst.

In the morning Raymond said that the gland was swollen because of infection and I felt a little silly and over dramatic - unEnglish in fact. This is because being British, not too much emotion is allowed. In some ways that is good because it avoids self-obsession and worrying unnecessarily but in other ways it doesn’t help. Once you have had cancer you know it can return. You can’t be complacent about infections or the smallest change in your body. Gradually you learn to bear a weight of anxiety which would be impossible when one was younger. In other words, you learn to live with cancer knowing that no plans can be too concrete but that there still must be plans. We have to have some hope even if it will be dashed and to realise that there can be happiness in every day however dark.

When I was younger I lived with certainty, a certainty which was removed with the death of my father when I was 17. Now I have learned that life is more subtle. On one hand we take delight in our daughter’s new career and on the other we share the experience of all other parents in a certain sadness that an era is over. I used to teach adolescents about the themes in Elizabethan and Stuart poetry where life was so uncertain that to make the most of their lives they learned to seize the day. Carpe Diem – a theme for autumn.

Holidaying in Carentan

We have just returned from France and I realised it was 18 months since I had been there and I think my French vocabulary had suffered a little. Raymond managed to get a number of things done on the boat which pleased him. He went early in the morning and we spent the rest of the day together with visits to Carteret, St Mere Eglise, St Vaast and also one of my favourite places, the estuary. We both had appropriate clothing and wellington boots for working out over the sand and the wild life was wonderful.

Carentan has really improved its facilities over the past few years; I think they must have a direct line to EU funds. The new swimming pool has now been finished and really fits in very well. The market was only about half the usual size on Monday. Whether this has anything to do with the recession I’m not sure. However it does seem to have affected Britanny Ferries where passenger numbers are seriously down. They are even considering ending the crossing from Portsmouth to Cherbourg. This will make our journey from Caen an hour to Carentan but it also means we would not be able to come over as foot passengers and catch the train direct to Carentan.

In the past we have spent a good time looking round the Auchan shopping mall and stocking up on provisions before having a walk around Cherbourg. As a port it is quite interesting and much nicer than Ouistreham which serves Caen. However market forces will prevail and over the years there have been a lot of changes to the ferries. For many years they actually went from Southampton and it seems what is lost does not return.

For many years self-catering was not only enjoyable but very cheap as groceries were about 40% cheaper in France. On the way home we always stopped off at one of the hypermarkets for a large shop – not just wine and cheese but other basics like detergent. This time we actually took a little food to France! Wine is still cheaper and we bought some of our favourite delicacies which we can’t get in England but not the enormous amounts we used to. We used to laugh on our journey home on the M27 to see so many other laden cars practically scraping the road.

We had the luxury of being able to stay in Peter and Sarah’s spacious gite and I was able to walk into town. The countryside around is really fascinating. You can see this on www.vacationsinnormandy.com/contacts

Preparing for tomorrow

The more I think about it the more I consider that at least some of the unwanted activity in the lymph nodes is caused by the graft versus host disease. I am a little worried about the activity in my throat; that’s new in the first and second PET scans. I am hoping that by the time we return they will have lined up an ENT specialist, a dermatologist and a CT scan. Even with all of that lymphoma is so sneaky I don’t think we’ll ever be able to prove I’m well unless I survive for five years.

Kind friends and family are trying to find out how I’m taking all of this and it is difficult to say. When I am busy I am OK but at 3.00 a.m. it’s a little different. I think Dr Potter was a little concerned about how I would cope but so much has happened in the last few years that I have learned to make the best of things but it’s difficult for the family.

This afternoon I have been cooking again and preparing for tomorrow. We are taking a cooked gammon with us and I’m busy clearing out the fridge and using up various items. Ray has some running around to do today and is getting me a new phone. I dropped it in the hospital and it gave up the ghost on texting but the other day I dropped it and it shut down altogether.

Next I must work out all the tablets and creams to take with me. People tend to think that once a transplant has “taken” the rest is plain sailing. Some of the tablets I will have to take for the rest of my life; others are used as anti-rejection drugs in the hope of stabilising the graft versus host disease. It means I am totally dependent on this medication and I miss the more carefree days of the past.

It’s all in a good cause. Tomorrow we are off to France. I hope I shall see Anna before we go; she has a lot of mixed emotions at the moment and I want her to be able to really celebrate her success. It is so difficult for youngsters these days in times of recession to succeed but she certainly deserves it.

Keeping busy

Anna had all along thought that Bournemouth would be the best position to take if offered not only because it was close to home but she thought that the courses she was required to teach would be most compatible. However, the specification she had been given proved to be incorrect and she was not happy with what there. I cannot be more specific than that publically. In the end she was not offered the job and has accepted the one in North Wales.

This has meant having to cancel all her adult and continuing education classes which she has found difficult. However, we have reassured her that her classes would have been cancelled without any compunction by the colleges if they did not reach the required numbers, but she is loyal and conscientious. She must now think about moving. She had hoped to get a furnished flat so she could keep everything here to come back to especially since the post is maternity leave cover. However, there doesn’t seem to be much furnished accommodation available and she will have a lot to sort out in a short time. Fortunately, she has good friends who live in Wrexham who can offer her some good advice. That is a comfort to us as it means she won’t be lonely.

I have been trying to keep myself busy with cooking - nothing which requires any deep thought but needs attention. So I have made a glazed fruit tart with strawberries and nectarines as they must be used before we go away. My mobile phone is broken so I have been tied to the house awaiting a telephone call from the Marsden. I have, this afternoon, telephoned Dr Potter’s secretary and he is due from clinic in about 45 minutes. Yesterday she implied he was free this afternoon. As a lot of people go home early on Fridays I am not in a hopeful frame of mind. I have a horrid suspicion that I shall be going away without knowing the results of the scan. It is extremely difficult to write this blog at the moment but I can edit it again later so I shall publish.

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At 5 p.m. the hospital called. The result once more is not really clear. Normally malignant lymphoma returns to its original site and that is clear. However, there are a few signs of slight activity elsewhere; these are not in the same place as the sites of slight activity I had for the last scan 3 months ago so this is puzzling. They propose to do a CT scan as a more localised form of scrutiny and a needle biopsy which I think is wise. One of the suggestions is that the strong nature of the skin rash may be causing problems as this can happen. So it is neither a death sentence nor a clean bill of health. I must submerge my anxiety and go on as normal.

Nothing is certain

We must wait to see how Anna has done in her interview at Bournemouth. The city was crowded when I took her to the railway station this morning and she arrived with only seconds to spare before her train left for Bournemouth. I am very sad that she may be moving away; it would be different if it were for a permanent job but this is the start of her professional career and we will do everything to encourage her.

Worryingly she has a heavy cold so I hope I don’t get it. I’ve kept quiet about it because I didn’t want to upset her but any infection is serious for me.

I shall know the results of my scan tomorrow afternoon so Dr Potter’s secretary tells me. He has not been in the hospital so has yet to look at my results. He always does the ward round on the Transplant Unit in the morning so I shan’t be able to talk to him until later on in the day.

It has been a day of uncertainty and only gradually are things beginning to work out. Jonathan’s contract which should end tomorrow has been extended which in many ways is good but it does prevent him from coming to France at the same time as us. He had been planning to camp; he camps in all weathers even in the depth of winter and certainly seems to enjoy it. Perhaps later in the year.

I hope tomorrow will bring some certainties to our lives. However, I do hope they will be for the good.

Waiting

As a family we are all waiting. Jonathan is waiting to see if he is required to work some extra days after this contract expires on 10^th September. If he is not required to work, he would like to be able to come to France with us. We would thoroughly love that as we enjoy his company very much.

Anna is waiting for the results of interviews. She has been offered a job in Wales but the interviews for Bournemouth and Portsmouth are 9^th and 28^th September respectively. She can probably avoid giving an answer to Wales until after the Bournemouth interview but she can’t really swing it until 28^th of this month. Portsmouth would actually be the easiest to get to from home but there are other factors including the lengths of the contracts and the type of work she would be required to do. The start to her whole professional future depends on the events of this month.

Raymond is waiting for a promised interim payment from the other side in his accident claim. They say the cheque has been signed and is on its way but so far no appearance. Last time our solicitor had to threaten to send in the bailiffs before they complied, so they are not really a very reputable firm to be dealing with. He has received a request to attend an appointment with an orthopaedic consultant on the Isle of Wight from the other side. This is for 28^th September and we both hope to go. It will be one more hurdle to jump before the case is concluded.

I am waiting for the results of my PET scan. Is the lymphoma back? If so does it mean it’s only a matter of time? Is it clear? If so what is the medical significance of that?

I can't go out; I must wait by the phone. Nothing can be planned or decided until I know whether I have a future.

On hold

We had a great weekend as Jonathan came down on Thursday, worked in Southampton on Friday and stayed with us until Sunday. As Anna was here for some of the time the house was full with their warm, vivacious personalities. On Saturday we celebrated my mother’s 97^th birthday – what an achievement!

On Sunday later afternoon we went with Jonathan up to his flat to stay overnight as we had an early start at the Marsden. Josie cooked us a delightful meal but we went to bed early as we were both tired. We managed to get to the Marsden for 8.15 and I had my blood taken for testing in the Transplant Clinic. We arrived for the PET scan at 8.55. Unfortunately, they had double-booked the 9.30 appointment and although I had arrived first and early, they decided to go ahead with scanning the man even though I had to get back to the Transplant Clinic for my appointment there. I didn’t get back to the Transplant Clinic until 12.30 p.m.

We saw Dr Potter who suggested increasing the anti rejection drug, cyclosporine, and possibly seeing a dermatologist regarding my skin which is very red and fiery. Apart from that my blood counts are good and improving. Then I was due to have my pentamidine only unfortunately, it hadn’t been ordered from the pharmacy so I had to return at 4.00 p.m. It meant we started our journey homeward rather later than we had anticipated and as we crossed the border into Hampshire the sky darkened and it came on to rain.

And now I wait for a phone call. This is a crucial scan and my life is on hold until we get the result. I can’t settle to doing anything. Years ago I would just have died from lymphoma but I have had quite a few narrow escapes in my life from which I would have died in years gone by. There is hope of a cure but I have to wait and I am not a patient person.

Late summer

It is a sunny day today with little wind. During the past week there have been a couple of dull days with a cold feel and we have had the woodburner on in the evening as I still feel the cold. Raymond went into the woods behind us and collected some wood ready for the winter season. On the opposite side of the road, the woods are owned by a neighbour who is also happy for us to remove the fallen wood. Many of the trees are birch which burn well. Although they are not good woods for wild flowers in spring, in the autumn they are full of amazing varieties of fungi including fly agaric (the red ones with the white spots) and chanterelles.

I haven’t had much sleep during the past week and yesterday evening I was sick. However, after that sheer tiredness overtook me and I slept. When deprived of sleep for any length of time it is so wonderfully refreshing to have a real sleep. I am annoyed at being sick as I haven’t been sick for a little while. It has nothing to do with any food I have eaten, just part of the post transplant recovery process. It was particularly galling because Raymond cooked a lovely brown trout he had caught. The flesh was lighter than the rainbow trout we usually have, and was very delicate.

I am very excited today. Jonathan is working in Southampton tomorrow so has decided to come down tonight and stay overnight. He had already planned to be with us on Friday night, Saturday and most of Sunday but this is a real bonus. Fortunately, Raymond gets equally excited and it is a joy we can share. On Saturday we shall have my mother over so that she can spend her 97^th birthday with us. Later on Sunday we shall go back with Jonathan and stay overnight ready for our early start at the Marsden on Monday.

I am glad we are about to have a good weekend as next week for me will be rather tense. So much depends on the outcome of this scan. If it is clear I can start to plan for the future just a little (nothing is ever certain with lymphoma) but if it isn’t we shall be truly disappointed as we all hoped that the bone marrow transplant would give me a chance of survival. By this time next week I should know.