Glimpses of cheer

I’ve just got to write something cheerful. This is just too depressing for words. I apologise that recent blogs have been very serious. I have been very cross about my treatment and when I have been unable to have a go at the medical staff, I have tended to go on a bit of a rant. I know there are many people far worse off than I am but sometimes you need to reach out and things we write strike a chord with other people.

This weekend has been busy as Ray was running a course and the weather was dreadful. About half of the course takes place outside the studio in beautiful nearby locations. We have to have some very patient models who will put up with the rain, wind and cold. Fortunately they are lovely people with a real sense of humour and all went well. I am always involved with the preparations and props so I was just kept busy enough.

As I came home on Friday with very real concerns about whether I really was going to get to the transplant stage and was obviously very unhappy, my lovely daughter gave me so much wonderful support this weekend. We visited a Dickensian Christmas Fayre which took place in the Portsmouth Historic Dockyard – processions, theatre, Victorian market, amusement booths and a pipe band. The following day we went to a hotel in the New Forest for a special Christmas event.

Monday got serious again: a visit to my GP to try to get advice about treatment, then to the oncologist specialising in radiotherapy. I did mention all the delays as he obviously thought my transplant was at the beginning of next year. I should have a CT scan on Thursday when I will be measured up for radiotherapy. The actual radiotherapy will begin in Christmas week! I am just so lucky. There will be 18 sessions, so 18 trips to the hospital at £10.00 a visit. Being ill is expensive.

Yesterday I had a scan at the Nuffield Hospital for the ENT consultant and a hearing test as I have tinnitus but no waiting around – so different from the NHS. Tomorrow I go to the NHS hospital for a CT scan prior to radiotherapy and I will be marked up ready for it to being in three weeks.

So this is me being cheerful! It’s not all bad, of course. Tonight we are going out and on Saturday we are going to London to visit our son – always a treat and absolute relaxation.

Battles on all fronts

When I knew in November 2008 that the lymphoma had returned and my only course of action was to prepare for a bone marrow transplant, I knew it would be difficult, but I had no idea how many battles I would be fighting on so many fronts at once. I knew that it would be hard to get the disease into remission, but I had no idea that I would have to be the one to prompt consultants into taking action. If I did not have private insurance and was relying on the National Health, I am pretty certain that the transplant would not be possible because of the delays.

I now know that I have to watch each specialist like a hawk. Of course, some are absolutely excellent but if the key personnel guiding your treatment are not really efficient, then it really is a matter of life and death. I had hoped to have a pleasant relationship with all the medical staff but I realise I must be vigilant and assertive at all times. This is easier said than done when you are in a weakened state. Sometimes it is easier being assertive for other family members than for yourself.

But life goes on. We really could do without this wretched case against Biffa. On of their lorries ran into the back of a stationary line of traffic at 58 miles an hour. Ray was in the penultimate vehicle. The driver made no attempt to stop. What he was doing I do not know. He was prosecuted and found guilty. I don’t know how the other people in the traffic are faring but it has been very difficult for Ray who has been physically, mentally and emotionally damaged.

He has had a lot of medical bills resulting from the accident and the time spent attending his medical appointments has meant time away from the business. The papers have now been entered into Court which may mean that a timetable will be set up which the other side must adhere to but we expect all sorts of ploys to enable them to have more time – but why? The Biffa lorry driver was guilty – why not do the honourable thing and pay up?

Ray has had all the medical examinations necessary for the case and at each stage the other side could have suggested a professional of their own choosing but they chose not to answer letters. No doubt they will now want their own professionals used as a means of delaying payment still further. Do they hope we will give up? Do they hope we will run out of money? Do they hope I will die and Ray will not want to pursue the case? If Biffa were an honourable company they would intervene and let us have whatever time we have left to spend together in a calm, secure and stress-free atmosphere. But that begs the question – is Biffa an honourable company? Too many battles on too many fronts. I just pray for the energy to go on.

Tears of Frustration

I came home today after my visit to the ENT specialist and burst in tears of frustration. He couldn’t understand why I hadn’t been referred to him earlier, considering I have insurance and I have been suffering for eleven months. He told me that I must have at least a month of high-dose antibiotic specially designed for sinusitis as well as nasal washes. He has arranged a CT scan for me (in the middle of radiotherapy!) and warns me I may need an operation. He knows this may put back the transplant. I have explained that the lymphoma may grow back and he understands my dilemma.

Some people, whether they work in the private or public health area, are really efficient (like my oncologist) and others just can’t get their act together. What worries me now is if the Bone Marrow Clinic are inefficient over their administration, how good are they at their job of doing a transplant? How concerned are they about individuals? How observant are they? Do they have a sense of urgency?

With the NHS we are encouraged to be passive and have things done to us. When going privately, we seem to have more say about our treatment. The specialist today asked me about my hearing; obviously ear, nose and throat are linked. I explained that I had had two types of tinnitus since having a reconstruction operation after in situ ductal carcinoma so I know he understands that I have been put through the mill by the medical profession.

On Monday I should start with the radiotherapy. Perhaps they will be kind enough to let me know how long I will be having radiotherapy for as it’s been difficult arranging other medical appointments around it. There are so many ways in which the NHS is good but they just don’t get the idea that everything does not revolve around them. Of course the treatment is essential but when you contrast the NHS attitude with that of the private sector it’s like chalk and cheese.

It’s really made me question whether I want my transplant done in the NHS hospital. I have talked to BUPA who have told me I qualify for a private transplant but I would need to find out whether the same bone marrow donor would be available for a private transplant as for a National Health one. Nothing is ever simple. It would be very difficult having not only the transplant done in London, but attending all the hospital appointments afterwards which amount to about three a week.

Testing Times

On Tuesday I had lots of tests at the hospital on kidneys, heart and lungs to ensure I am medically fit to undergo a bone marrow transplant. I had been disappointed that I would not be admitted on 6^th December but there were still some problems to be overcome before it could all go ahead. There was some remaining cancerous activity and it had been decided that I should have radiotherapy. In addition, I have had chronic problems for eleven months with catarrh and a cough.

Unfortunately, although my oncologist moves very swiftly and happily between the NHS and my insurer, BUPA, not every one is so quick and now I have been transferred to the care of the Bone Marrow Unit. I wrote a letter to the Transplant Consultant which Raymond delivered by hand to her secretary on 2^nd November, indicating that it might be quicker to use a BUPA consultant for my ENT (ear, nose and throat). To cut a long story short, the Consultant when telephoning us 10 days ago denied having received the letter but promised to arrange an appointment.

Yesterday, while I was having my tests, Raymond collared the secretary to find out what happened to the letter. She admitted receiving it and said it was attached to my file. Surprisingly just 10 minutes before I was due for my final appointment of the day, with the Transplant Consultant, I received a telephone call on my mobile to say that an ENT appointment had been made at a BUPA hospital on Friday! Only three and half weeks late. Unsurprisingly, my admission has now been put back to the end of January. The Consultant made a number of excuses about why she hadn’t seen the letter and I also reminded her that I wanted to start the radiotherapy. Today at long last we received a phone call that I have an appointment with radiology on Monday

What is disappointing about all this is the procrastination and evasion of truth. It makes you lose confidence in people. Raymond even asked me whether I might prefer to have the treatment at the Royal Marsden Hospital in London. If I lived there, I certainly would but it is not just the difficulty for visitors during the time I am in hospital, but afterwards I shall have to attend three times a week for some time which makes this impossible. So I am stuck with the hospital I have been attending (although to be fair there are some very good consultants there). I know though that we are going to have to be super-vigilant to ensure the correct care.

However, I do now feel that although my admission has now been postponed, everything is in hand to ensure I will be fit for admission and, therefore, I should stand a better chance.

Window of Wellbeing

This week could be a turning point as far as my treatment is concerned. There is so much still to do before I am admitted to hospital and my diary for the month ahead has been deliberately kept blank so I can fit in the radiotherapy and other hospital appointments. But there are also people I want to see, both relatives and friends.

I had a telephone call from someone who should be a close relative and who didn’t even know I had been ill for nearly three years but he decided some years ago, for whatever reasons, that he didn’t want to be close to Ray and me any more. Now he knows I am seriously ill he wants to know if I’d like him to visit. I think, from past experience, that this is more about assuaging any guilt in the future if I don’t make it.

No, the people I want to see are those with whom I have been in regular contact, particularly during the past three difficult years. They have been a source of strength. They have their own difficulties too and we have been able to lift each other up and have good times together. Some people are not close friends, just acquaintances, but they too have lifted me up with their comments, enquiries and sense of humour. Living in a village means we see other villagers quite regularly and this contact has been valuable and will continue to be important for Ray when I am in hospital. Some real boosts to my morale have come from the internet, comments from people I have never met.

As I’ve discovered other people suffering from the physical effects of cancer or lymphoma, and those suffering from the psychological effects of being donor conceived, I hope I’ve added my feelings of empathy. Although we live in an enormous world which can seem so anonymous, the reaching out we do to each other is so valuable, particularly where our experiences overlap and we can offer not only sympathy but real understanding.

This window of physical wellbeing may be short-lived as I must start radiotherapy soon. However, feeling not only better physically, but also being mentally much more alert, has been such a boost. I relapsed last November, learned of my donor conception in March and entered a real trough of despair as I thought I would never find a bone marrow donor. Gradually I have been climbing out of the trough. I know there are immense difficulties to come but survival is a very important instinct.

This week could be a turning point and I must make the most of it.

Via Media

For well over 50 years, Alistair Cooke, an English-born journalist, broadcast his Letter from America which monitored the pulse of life in the USA and interpreted it for listeners in other nations. He would always start his letter with an anecdote and it was always, I repeat always, impossible to second guess where this anecdote would link to contemporary events and his theme for the broadcast. I was recalling this as I read through my emails yesterday.

It was the end of a satisfying day and I was sitting in front of our wood burner in which we were burning the birch logs which Ray had gathered that day. Prices for fuel are so high nowadays that many of us are turning to more traditional ways of heating. For Ray, a walk on common woodland in a neighbouring village brought to light some newly felled trees. On investigation these were available for anyone to use. Consequently, he has made a few trips in the Jeep and brought them back for sawing into suitable lengths and our woodpile has grown.

Perhaps this is going to turn on a well-known phrase about woodpiles? No, I have foresworn racism, multi-culturalism and eugenics. Perhaps this is a homily about the satisfaction to be obtained from hard work resulting in a timber harvest. Perhaps it is symbolic of the fight of the small man, the individual, against big business such as the power companies.

Possibly the latter has the most relevance to my emails and the fight in which I, and others like me, are engaged. Certainly, those of us who have been involved in academic life are used to producing arguments. These are well-developed, factual and objective theses substantiated by evidence. These arguments can win over minds and develop intellectual thought and this approach is vital, particularly if laws are to be changed.

However, we are also won over by other means. Newspapers and television, even blogs, thrive on human-interest stories and these use more emotive language to do just that – provoke emotion. Sometimes this emotional approach can change people’s minds but the problem is that these emotions do not always last.

When we read the newspapers we gain our factual knowledge from the front pages which we hope will contain some objective reporting but then we turn to the inner pages, to the well-respected opinion writers who interpret these events and help to shape our thinking. Like Alistair Cooke, their writing often contains anecdotes but it is also evidence-based. The controlled subjectivity of this writing provokes discussion and forms opinion. For most people this is more accessible than academic or purely objective writing. We need personal opinion based on developed thought not just an outpouring of emotion. In order to win both hearts and minds several types of approach are needed.

Stir-up Sunday

Feeling better than I have for months as effects of chemo wear off. This is a window between chemo and radiotherapy, but it is so great to feel normal even if it is only for a very short time. Still no ear, nose and throat appointment. I don’t think the consultant has been in touch with BUPA (my insurer) at all but is still relying on the NHS which could take weeks and, therefore, delay my transplant further.

I shall be going to see the Bone Marrow Consultant at the Transplant Clinic on Tuesday after all the tests on my heart, lungs and kidneys so I shall tackle her then but there have now been weeks of unnecessary delay. The irony is that BUPA say just a phone call from her is all they need; she can do the follow-up letter later.

Otherwise I am trying to use my time profitably, not just preparing for Christmas although I am marzipanning the cake and making mince pies today, but also trying to label everything so it will be easy for my husband and daughter to find where everything is when I ask for various clothes to be brought into hospital. Ray has just planted some daffodil bulbs today and they should be up when I come out of hospital – if I ever get in!

After Tuesday I hope we shall have some idea when the radiotherapy will begin and how long it will be for. Then Raymond can plan if he is going to France to check on the boat and I can sort out my diary more effectively. However, I don’t know whether the consultant will have got round to sorting this out by then which is worrying.

It was wonderful walking in the woods this morning; it was so still. It’s strange, my parents were quite urban people but from the very start I have always loved the countryside and fortunately, although Ray was brought up in the town initially, he loves fishing and country pursuits. Perhaps my donor father, whoever he was, loved the country.

Traditionally tomorrow, Sunday, was Stir-up Sunday. The name comes from the opening words of the Anglican collect for the day which began with “Stir up…” but for centuries it became the day in England when people made their Christmas puddings and every member of the family gave the puddings a stir and made a wish. The next year for Ray and me is likely to be very difficult. Ray’s case progresses only very slowly and the other side will refuse interim payments wherever possible to try to force us to accept a low settlement. For me the battle is for my life and the result may be inconclusive but we both wish that we are given the strength to cope with what lies ahead and that a year from now we will be looking at a happier future together. That will be our wish for Stir-up Sunday.