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.

Preparing and adjusting

This is a busy time of preparation for most people in the run-up to Christmas. Often it is a very happy and sociable period in our lives. Thinking that I was to go into hospital at the beginning of December, I have in fact written cards and bought most of the presents – even wrapped them too.

However, there are this year additional preparations for me. I have to see the dentist and opticians to ensure I am healthy before going into hospital as I shall not be able to go for treatment for about 12 months. There is a will to sort out and my mother’s finances and well-being for the period when I shall not be able to visit her.

Going to the opticians the other day I found that my sight had only slightly deteriorated with the chemotherapy which lifted my spirits a little. However, I was asked lots of questions about my family’s eye health. These I would have readily answered just a year ago, but now I have to say that half my family medical history is missing. Some conditions such as glaucoma are inheritable but like quite a number of people I know nothing about my paternal family. For years I told absolute lies about my medical background – unknowingly of course. At least if you realise you have no knowledge of one side of your family you don’t give false information which can undermine diagnoses.

Next to the new dentist. Gentle reminder to brush the inside of my teeth more but no fillings needed. Refused to go to the hygienist as I caught an infection from the previous dental surgery. The dentist proved quite understanding and he will scale my teeth himself – for a higher charge, of course! Receptionists keen I shouldn’t really have to pay for my treatment as I am seriously ill but I’ve looked through all the literature and I don’t fit any of the categories which are exempt as I’m not claiming any state benefits. To them that hath more will be given!

Yesterday was Will day. It is quite difficult deciding who shall have what and how you’d like your funeral service to be when you desperately want to stay alive. I suppose once it’s done it can be put away and forgotten about, one less thing to worry about.

Today I have been shopping with my daughter for her Christmas present but this was very pleasurable. We had a leisurely lunch in town and we enjoy each other’s company. We all wanted the transplant before Christmas but we are gradually adjusting.

Multiculturalism or Eugenics?

Is multiculturalism another form of eugenics or social engineering? Many of us who are donor-conceived, particularly between the 1930s and 1970s, realise that eugenics played a part in our conception, but another story in the Timesonline 16^th November 2009, is very sad and perhaps related to our plight.

I had heard about the forced migration of children from the UK to Australia but did not realise the true consequences until I heard about the apology from the Australian Prime Minister, Mr Rudd, and proposed apology from Gordon Brown. These migrations of children from children’s homes or taken from unmarried mothers, occurred during the 1930s to 1970s. They were separated from their country of origin and families, told they would have a better life in Australia and then sent to institutions there.

Children were placed in UK orphanages for a number of reasons, but often because one parent had died and the remaining parent had to work and could not look after younger children. Many of these children had older siblings. In some cases “orphans” were told that their parents had died when this was not true. The institutions in Australia were sometimes much worse than those in the UK and they were physically and sexually abused as well as being exploited for work. In those days Australia, in particular, wanted white migrants from particular areas of the world such as Britain, who could add to the workforce.

As they grew up, the migrants tried to get in touch with their wider families back home but at every stage they were obstructed and often lied to. Seeing these migrants, many of them quite elderly now, was an emotional experience as they still felt, all these years later, the wrench from the life they had known and the separation from their families, culture and history. One woman questioned why they had been sent away while Britain had then later allowed and encouraged so much immigration from other parts of the world. It made no sense to her.

In the last few years there has been a very definite move towards multi-culturalism. Naturally most people in this country think that we should get on with and understand people from other cultures. Racism is nasty and cruel as we all know. However, a lot of these moves to encourage immigration were not only political but also motivated by odd, personal reasons, in order to make Britain a multicultural experiment. In GCSE English exams it was possible to pass an English exam without encountering any English poetry. All the poetry studied was written by non-English nationals. Most of us are proud of the number of different nationalities which go to make up our background but we perhaps question the motives of government initiatives either to restrict or widen our national racial mix artificially for political reasons.

The other themes which permeate this sad tale of forced migration are firstly, the total disregard of the importance of everyone’s genetic roots, nationality, culture, history and family. The second theme which comes to the fore is the total disregard for the children. As children they didn’t matter; they existed to meet the needs of other people and could be used like pawns in a game of chess. Donor-conceived offspring can totally sympathise with their overwhelming sense of loss and their frustration at dealing with hostile authorities who use secrecy to justify their dubious actions.

Natural Selection

Darwin’s theory of evolution makes us evaluate the way in which human beings relate to the whole animal kingdom and how we have evolved as a species. The study of the human race and the nuclear family is fascinating. However, many of us who are donor-conceived have an overwhelming sense of loss or disconnection. We may well have one side of our family to whom we can relate but even they have nuclear families which are not the same as ours. I always knew that I did not relate too well to my adopted brother as we were very different people, but that I had a very strong connection to my mother’s family. I admired and loved my father’s family but there was not the same closeness when my cousins and I grew up. As my father died when I was at school, I never had time to explore our relationship in the way I would have liked.

When I was diagnosed with lymphoma I realised I would need to let my son and daughter know more about their family – not doing a family tree but explaining about family members, personalities etc. for when they had children of their own. This is when I started to look more closely at my family and relationships. I realised that once my father’s brothers and sisters had died, the closeness was lost with my paternal cousins and that although the family was very middle class, in fact they were very different from me.

This year my mother confirmed to me that I was donor-conceived. It was a shock but not really a surprise. Once I started looking at my life and relationships more honestly, I could see all the anomalies to which I had closed my eyes. Once you have children, you start to look much more at where they and you come from. Our heritage becomes very, very important. Nowadays, we have moved away from the 1960s with its insistence that everything is influenced by our environment. We are realising, not just from an anecdotal point of view, but from scientific study, that genetics account for more and more of our behaviour, talents, personality and physique.

This is why it is important for us to convey to other people that deliberately creating children who are designed to be separate from their genetic and cultural backgrounds is cruel. Recently a number of us were thrilled to learn another donor-conceived adult had discovered a half-sibling. We understand the joy it must give and it gives hope that such a discovery may be possible for other donor-conceived people, despite a deliberate policy by the medical profession and others to ignore our deep-rooted needs. Our right to be genetically in touch with our families is just as important as the needs of infertile couples to have children. However, our needs are not given the same prominence. This is not only because infertile couples are more vocal, but an industry exists and professional careers are being made on the back of infertility.

We are making much of Darwin’s anniversary this year – a pity we don’t really take on board what natural selection really means. This does not mean that infertility should not be helped, any more than illnesses should not be cured, but it should not be done at the expense of damage to other people.

Weathering the storm

The wind outside the house is very strong and the air/sea rescue helicopter has been hovering nearby so there is a vessel floundering somewhere in the Western Approaches to the Solent. Our hearts go out to them because we too have been caught in storms at sea.

I can’t sleep. The day has been a rollercoaster and it all started so well. The oncologist on Wednesday confirmed that the Bendamustine had worked and the lymphoma had dramatically reduced. They don’t normally do a PET scan and I would have been signed off as in partial remission (mantle cell lymphoma never completely disappears). However the PET scan was done for the bone marrow transplant clinic and revealed two tiny areas of activity. My oncologist reckoned this would be dealt with by radiotherapy and if I consulted a BUPA Ear Nose & Throat specialist (health insurance) I would get my nasal problem solved in time to meet my 6^th December deadline.

The Bone Marrow Clinic move in less dynamic fashion. Although they were the ones who wanted a specialist to deal with my mucus problem it had been left to me to get a medical appointment. This turned out to be done not by a proper NHS consultant but by some sort of quango assisting the NHS (probably set up to reduce the Government waiting times). This was a great diagnosis but no treatment.

I found it impossible to reach the Bone Marrow Clinic to find out what was going to happen but eventually I found someone today who relayed a message to the consultant. Communication is not a strong point. Having told me that my admission date would be 6^th December, and the family having come to terms with my being in hospital over Christmas, this was all changed. My treatment would be determined later this month. What a waste of time! Eventually they confirmed that radiotherapy would be needed but not started until after 24^th November and after prompting from me, that they would find a BUPA Ear Nose and Throat Consultant which will, at least, shorten the waiting time. I insisted I would not wait until 17^th December for my NHS appointment as I had already had this problem for eleven months. I said that if they didn’t arrange this via BUPA, I would. This seemed to galvanise them into some action.

I am coming to terms with the delay. I realise that it might not be wise to have the transplant too close to having radiotherapy which I know goes on working after it has been administered. I know that I must be in the best possible health ready for the transplant. However, why did they propose 6^th December? My oncologist is so different; he would have organised the necessary treatments/appointments the day he saw the scan, but he has had to hand over my treatment to the Bone Marrow Transplant Team. They are nice well-meaning people but not used to moving between the NHS and private care to ensure the best outcomes – and obviously not good communicators.

We will weather the storm. There are worse ones still to come.

Mixed messages on Armistice Day

This morning’s walk was calm and windless but a glance above

Revealed dark clouds, small patches of blue and a straining sun -

Mixed messages for a day full of presentiment,

Alone in the wood save for just one walker and his dog.

The main path is narrow with occasional gates to bar the way;

Leading off are blind alleys into impenetrable trees,

Then the grassy plateau with swathes of blackening plants

And the odd ragwort and patch of gorse both sporting yellow.

Little sign of life today in all this stillness - but

Evidence of coppicing by the rangers holds promise

Of renewed growth in these woods in spring

Just then the single rabbit flashes his white tail while scuttling home.

Before the final hill where Raymond takes my hand to help me

We walk through a narrow path where brambles

Hold out their tentacles so near but not close enough

To touch us or prevent our passing.

Once atop the final hill the view spreads out before us

Against the brightening sky the dome of the Chapel Royal,

Relic of a Military Hospital of bygone days, and so

My thoughts turn from my own difficulties to remember

Those for whom today will not be difficult -

Those who will not see today at all.

A feeling of loss

I have made arrangements to have my DNA taken and stored this week as it will change if/when I have a transplant. I realise that I haven’t a hope of finding out who my father really was or possible half-siblings before the bone marrow transplant. There is just so much going on. Of all the events which have happened this year, that was the most challenging as it changed every perception I had about myself and has made me rethink all my relationships.

Perhaps when/if I emerge from the challenge I face in the bubble I can revisit this topic. I am a little ultra-sensitive at the moment and although I would have liked to contribute to the debate about donor conception, I think perhaps I must leave this to others who feel, perhaps rightly, that they are more knowledgeable. There have been so many areas in my life where I have found that a head-on approach is not always the best and in the end I have usually found alternative routes.

As a newcomer to the debate, in many ways I lack experience but what I do have because I learnt about my origins so late in life, is the experience of being on the other side of the debate. I don’t mean I thought donor conception was a good idea, but having been through the years of conceiving and bringing up children myself without knowledge of my origins, I was able to form my own ideas about adoption, IVF, abortion, eugenics without the subjectivity which comes from knowing about one’s own origins.

One of the greatest challenges of the truth about my conception is the feeling of loss. I am fortunate in having a husband and family of my own and I know I must look forward but we all come from somewhere. Most of us need to know about who we are and our history and I still feel that half of that has been lost. It is easy to dismiss this but when we hear about children adopted from one culture into another, of the latest schemes to manufacture embryos but we must start to think less about the sad lives of the couples who would love to have children, and more about the children themselves and their needs.

Difficulties

So difficult to keep thoughts and feelings in check. A letter arrived from the hospital outlining my appointments to have lung, kidney and heart functions checked. Made me realise I’d better do some singing practice to improve my breath control which is pitiful at the moment. One one hand this is all progress but on the other it reminds me that none of this will happen unless I am in remission and only Wednesday will give me that news. In addition, unless I can get rid of the nasal infection and chronic rhinitis, all this will be in vain.

It is such a strange time to be thinking about impending isolation because, of course, life is going on for everyone around me too with important events in their lives. Anna’s friend, Stu, is having a very difficult operation on Tuesday. My heart goes out to him because he has had to suffer a lot in his young life and now this elective surgery could improve his life but always it takes courage to face an operation because you do it on your own. I am thinking about him and hoping so much that all goes well.

In the wider world despite all the Christmas decorations and displays in the shops, so many people at the moment are facing real problems with unemployment and house repossessions, yet still we have bankers getting bonuses and M.P.s complaining about changes to their privileged lives.

At Christmas time, which is now approaching, we think of peace yet sadly the coffins of soldiers are being flown back from Afghanistan. Just as the best of a generation was lost in World War I, we seem to be losing so many really wonderful young men. I wonder how many wars there would be if the people who declared them actually had to go to war themselves.

So in my safe, comfortable world I must prepare for the journey ahead. It’s not as if I haven’t faced difficulties before, but I must try my best to make things as easy for my family as possible. As I read about other cancer and lymphoma patients also facing difficult treatment and scan results, I know I am not alone and we must all support each other.

Filling in the time

Tuesday was pentamidine day. It was also the day the central heating boiler broke down. Fortunately, the engineers arrived early, diagnosed the problem and fixed it so we set off for the hospital in good time. Unfortunately, it was raining and the roads near the hospital were gridlocked – parking is a very real problem, particularly when it’s wet. Ray dropped me off and spent the next half hour circling round to find a parking spot.

When I arrived, the pentamidine room was still occupied; they were running late as they had been held up by the pharmacy – probably one or two pharmacists spent hours traversing the city to find a way in. Eventually, it was my turn. If I could put the apparatus together myself I could go in; if not I would have to wait another 40 minutes for the fumes to clear so a nurse could enter the room.

The diagram was not the best but I managed to put it together and put the first drug in and connect it up. Unfortunately, as I have nasal congestion the whole thing was something of a farce. When I came to put the second drug in the apparatus had come apart and had to be cobbled together. I am always very shaky after the pentamidine so we had a delicious (!) lunch at the hospital to allow me time to recover.

Today brought news of the health checks I shall need before the transplant can go ahead. Although it looks daunting it somehow brings it all much closer.

Ray is desperately trying to fill the time before the PET scan results next Wednesday. He collected some topsoil from someone in the village and is redoing the flowerbeds by the front door – and he’s not a gardener. He’s even been seen sweeping up leaves ….

Now is a waiting game

Now is a waiting game. I am waiting for the results of the PET scan but I am also waiting to see what will be done to eradicate my other health problems so that, if I am in remission, the bone marrow transplant can go ahead. When we were at the hospital on Monday Ray delivered letters to the Bone Marrow Transplant Consultant and my oncologist. Unfortunately my oncologist is on holiday this week but someone is needed to co-ordinate the ENT treatment.

So far I have been trying to do what I can with diet, nasal sprays etc. but a more powerful approach will be needed if I am to meet the deadline. I am also worried about the number of scans I have had already and will have this year.

Although physically I am quite weak, mentally I am feeling a little better. Constant chemo has a serious effect on my concentration, vocabulary and memory – both short and long term and all this can be quite frightening.

Last Friday I wasn’t feeling too good and I was lying on the sofa when the skeletons arrived. No, this isn’t the chemo talking. Two skeletons arrived for my daughter, Anna. She is a forensic archaeologist and needed them for teaching. A friend of hers runs a museum and these were left after a Red Cross Exhibit. The Red Cross no longer wanted them and Anna’s friend had had them sitting in his office for some months.

As I looked across I had this surreal vision of a skeleton sitting in the red leather armchair I usually use – very comfortable in front of the log fire so I hope this was not an omen. Anna was beside herself with delight. The other skeleton was in pieces but it seemed to have two right arms and wasn’t that an extra pelvis?

They could be a good burglar deterrent if we go away on holiday in the future.

Remember, remember

I’m waiting for my PET scan results and to learn what the ENT experts plan to do. In the meantime articles in the “Sunday Times” and “Sunday Telegraph” have made me revisit my experience of ductal carcinoma in situ. In the late 1990s I could not get NHS reconstructive surgery after mastectomy because I had refused to be televised or to have my operation at a crucial of the academic year. I had to find a solution. My friend Marion, also engaged in adult education (short-term contracts), put her logical mind to the problem. She calculated that if I paid for my operation this might equal most of my part-time salary for that year, but I would be able to opt when I had the operation and thus save my employment, not just for that year but subsequent years.

Reconstructive surgery after mastectomy required two operations. The first removed skin and muscle from my back to the front so a new breast was built up and the second a built up a realistic-looking nipple.

Unfortunately, because I had these operations privately, my then GP (yes the one who had encouraged me to have the mammogram) would not allow my operation wounds to be treated by the practice nurse. I had to have a district nurse from another area who put on her rubber gloves to protect herself and then rummaged around in her handbag for a pen. I ended up with MRSA - I was told to take a couple of paracetamol.

Fortunately, the consultant who carried out the operation did assist me. I remember my husband driving me down to a private hospital somewhere between Portsmouth and Chichester and carrying me in to see him. I remember the fluid being drained off. I remember knowing that nothing counteracts MRSA. I remember the incredible pain. I remember listening to Rachmaninov’s second piano concerto and knowing, yes knowing that I had reached the crisis point when I would live or die.

I remember the helplessness felt by my family, my refusal to go back into hospital where I knew I definitely would die and I remember my daughter searching Southsea for manuka honey which she thought might save me. The practice nurse took matters into her own hands and rang me offering help. Miraculously I recovered.

After the second operation I contracted MRSA again, although less badly than the first time. This was because the dressings were not fastened securely enough at the hospital. But I did recover and you cannot spend your whole life looking back or being bitter about other people’s mistakes. I am assured that my lymphoma is not related to either the operations or the MRSA but the fact is we don’t know. People should not have mastectomies if they don’t need them – then they would be spared all the suffering.

Nightmare of ductal carcinoma

Not sleeping as PET scan looms. I’ve read articles in the “Sunday Times” and “Sunday Telegraph” which make clear ductile carcinoma in situ can lie dormant for years and perhaps half of them never develop into breast cancer yet hundreds of women have mastectomies which could be unnecessary. If I had not been operated on or subsequently developed MRSA from the sequence of operations which followed my diagnosis would I be suffering from lymphoma today?

As far as I was concerned the late 1990s was a very difficult period. The operation itself was absolute mutilation – a 19^th century solution to a 21^st century diagnosis. From then on I found it difficult to get work as I had a history of “cancer”. I remember arguing with my new GP as to whether it really was cancer and if I had to put it down as such on my health form for prospective employers – I always opted for ductal carcinoma in situ. My life insurance doubled overnight and trying to find travel insurance became a financial nightmare.

I did not opt for a reconstruction immediately as the mastectomy itself was difficult for my family to cope with and this would have entailed very long surgery. As it was I lost a lot of blood. Each morning we were got out of bed to have our breakfast in another room so the surgeon could do the ward round without the bother of encountering any patients. The prosthesis was awful so on my return home I requested reconstructive surgery which I understood would take place about one year after the original operation.

At the time the only work I could get was adult education short-term contracts which ran from late September to May when the examinations took place. I therefore requested that I have an operation in May, June, July, August or September as I would have no sick pay. I could hardly take on an examination course in all conscience and then say that I would be off work for six weeks. It would not be fair to students. I made this very clear and regularly enquired where I was on the list.

Then I had a very special offer. I could have my reconstructive surgery in June (12 months after my mastectomy) PROVIDED I AGREED TO BE TELEVISED – I believe it was for Channel 4. As my children were teenagers I knew this would be horribly embarrassing for them and refused. I then asked when my surgery would be if I couldn’t have the operation in June. I was told October – just at the start of the academic year for adult education. If I behaved ethically and did not take on any work, then I would be deprived of all my classes for that whole year and there was no guarantee that the Adult Education Centres would then come back to me the following year.

I explained that October was impossible and if necessary I would wait until the following summer. At that point I was told if I did not accept either of these offers my name would be put to the bottom of the list i.e. I would not be operated on at all! From then on the nightmare got worse …..

"Sunday Times" & Ductal Carcinoma

When I started this blog in June 2009 I started looking at the possible causes of my lymphoma, particularly those related to stress. I rather glossed over one very difficult episode in my life, ductal carcinoma in situ which I mentioned on 29^th June. An article in today’s Sunday Times criticising the Government for not ensuring warnings about mistreatment in their encouragement to women to have mammograms brings that back in focus.

If you have been following this blog you will find I am not entirely enamoured with the medical profession. In the late 1990s I was a fit, healthy woman. My then doctor was constantly wanting me to have a mammogram, not that anything was wrong, but it was like having a car MOT or maybe the practice got extra points for referrals. This was the worst mistake I have ever made.

I was recalled to the hospital to have a needle biopsy and faked a fainting fit half way through but not before they had made a start. Then I was told the shattering news. I had ductal carcinoma in situ. This is where pre-cancerous cells are detected in the milk ducts of the breast but haven’t developed into a lump or moved anywhere else in the breast itself.

I was told two ABSOLUTE LIES. Number 1 – it always developed into full-blown cancer and Number 2 – the only treatment was a mastectomy.

Even in my highly emotional state I knew that Number 1 was illogical – how could they tell that every case of ductal carcenoma in situ always developed into cancer – unless every woman who developed cancer had previously had a mammogram (that in itself could be a consideration). I was hustled into making an immediate decision by the scaremongering that hospitals can be very good at. Breast cancer was still regarded then as a major killer of women and I had my family to consider. My mother asked me why they could not treat the condition by laser – quite an intelligent remark in the circumstances. In the end I had to agree to the operation, not because I thought it was necessary, but because I was afraid that the needle biopsy might have disturbed an otherwise quite discreet site.

This operation set off a chain of events which were physically, emotionally and financially very, very costly……