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.