• Introduction
  
  
• Claudia's disease
  
  
• The difficulty of taking decisions
  
  
• Assistance to patients and their relatives
  
  
• The information to patients and their relatives
  
  
• Problem in connection with work and expenses
  
  
• Some possible effects of therapies
  
  
• Therapies to limit pains
  
  
• Personal relationships
  
  
• Diagnostic-therapeutic "implacability" and euthanasia
  
  
• Assistance to terminal patients
  
  
• Therapies not acknowledged by the official medical science
  
  
• Further information
  

1. Introduction

These writings have no scientific pretension and may partially reflect the personal and therefore questionable opinions of the writer.

The following information and reflections intend, as their main purpose, to furnish a synthetic outline of the situations and difficulties that Claudia, her relatives and other beloved persons had to face during the years of a very serious disease and to show, the same time, as the life of a patient suffering from cancer and that of his/her beloved persons may be extraordinarily rich. In this regard, as noted below, it is essential that the involved persons (doctors, nurses, other hospital personnel, immediate family, beloved persons, etc.) create the conditions favourable to the development of internal strength of the patient, talking and listening in an appropriate manner (communicating), giving and receiving love, attenuating as much as possible the impact of pain and reducing the social isolation that is likely to arise with respect to patients suffering from cancer.

For the purposes of chronicling and in order to outline some phases of Claudia's life, scientific issues will be mentioned, but without any intention of furnishing specific information that can be found in any specialised literature.

Another basic premise is that, as is known, there are extremely numerous and different kinds of cancer (more than 200), each of which may become manifest in a more or less serious stage and terminate, positively or negatively, at considerably different times.

The phases of Claudia's disease are summarised in the next section, in order to show that it was a rare and serious illness, with a relatively long duration, surgical operations and quite intensives therapies. Of course, this has implied determined situations and experiences, that at least partially may be quite specific for the particular case.

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2. Claudia's disease

Claudia's illness became manifest in December 1998.

It was an alveolar rhabdomyosarcoma, rare especially in adults, and very advanced, because at the time of the diagnosis it had already reached stage IVB. In fact, in addition to a main localization in the right gluteus, there was a metastasis in a distant lymph node.
In March 1999 Claudia underwent a surgical operation and subsequently cycles of chemotherapy and radiotherapy were made.
There was a complete remission, at least as indicated by the tests, that lasted almost two years.
In February 2001 a recurrence was discovered and a new resection was made, with subsequent brachytherapy.
In June 2001 a further recurrence was ascertained. Surgery was not possible, thus new cycles of chemotherapy were made with apparently good results.
However, the doctors unanimously suggested, in order to consolidate the results reached, subjecting Claudia to high dose chemotherapy, with transplantation of her own staminal cells.
However, in October 2001 the disease had already attacked again and the situation became worse in December. After the first cycle of high dose chemotherapy, there was an improvement and a further improvement was obtained through the second cycle.
In March 2002 the situation became such as to exclude any hope and at the end of the month she returned to her home, in the charge of an association for medical assistance to terminal cancer patients.

At four a.m. of May 2, 2002 Claudia entered into a coma and at 1 p.m. she died in her bed at home.

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3. The difficulty of taking decisions

Important alternatives may exist in connection with surgery, the times, the therapies, the centres and the doctors to rely upon, etc. This may be particularly true with respect to a rare type of tumour. It should be considered that often contrasting advices (sometimes superficial and emotional) are received from specialist and non specialist doctors, friends and acquaintances who have directly or indirectly experienced a tumour, and others.
The rarity of Claudia's illness, especially in adults, and consequently the difficulty of finding information and reliable statistics, contributed to increase uncertainty.
However, while it is advisable to receive various opinions before making important decisions, one must decide anyhow, and often in a short time. Consequently one should have confidence in the doctors in charge, although in an attentive way and without excluding changes to be rationally considered.
It is quite distressing and deleterious to be continuously in doubt about the decisions taken and to be taken, since this causes anguish to the patient.

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4. Assistance to patients and their relatives

The patients and their relatives need qualified assistance with respect to matters related to the disease, the therapies, and problems (for example, in order finding accommodation; taking advantage of national and local benefits for the patients and their relatives - such as attestation of invalidity and related indemnities -; convenient means of transportation), which while at certain moments may appear secondary can be quite important and give rise to intense worries. An important role in this connection can be played by social workers having specific knowledge and skilled and tactful volunteers, whom it is advisable to contact as soon as possible.
In relation to this and particularly with respect to psychological assistance, it is important to act by mutual agreement with the patient, especially if he/her has, like Claudia, a positive approach. It is difficult to understand the psyche of a cancer patient, even for skilled psychologists.

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5. The information to patients and their relatives

Even among doctors in general and oncologists in particular it is still frequently the practice not to inform the patient and at least some of the family members (who are likely to be deemed psychologically fragile) about the real situation, being silent or telling half truths. In certain cases this decision is probably correct, but when the approach is general and indiscriminate, apart from not respecting the right of information and the personality of others, there may be the risk of hindering the development of new stimuli with respect to the inevitable existential changes that the disease involves, thus lowering the reactivity of the patient.
In the case of Claudia, the fact to have always been informed, substantially in a complete way (although sometimes presenting the situation in an optimistic manner) and to have openly spoken with her friends, who were equal to their role, activated her strength, stimulated her in the search of values, prevented - in, for her, the fundamental sphere of friendship - the creation of isolation barriers, mental surrender and thus despair. To know the truth was the indispensable basis to face the situation and live in a positive way all of the phases of the disease.
Claudia's attitude was active also in connection with the information. She put questions to the doctors and, when she found the answers unclear, asked for explanations.
If the truth had not been told to Claudia and this had been discovered by her, negative consequences would probably have arisen, as well as the loss of confidence in the members of the family and the doctors.

Certainly, not every patient has the strength and the rationality of Claudia, and therefore it cannot be excluded that in certain cases prudence is appropriate.

However, when informing the patient about the gravity of his/her conditions this should be made transmitting serenity, strength and love and by trying to instil new stimuli and not just resignation. In this way the psycho-neural-endocrinous-immunology (PNEI) system of the patient will be in a condition to fight validly.

Claudia, during the years of the disease, the gravity of which was known to her, always tried, successfully, to live intensively and compatibly with her physical conditions, falling in love with Leandro, practising sports (in particular ski, a craze that she shared with Leandro), enjoying herself, travelling, working, studying, passing the examination for practicing the profession of attorney at law, meeting friends and her fiancé.
This happened until her death, also in the last month, when she knew that the disease could not be defeated. Probably, Claudia and her beloved persons would have lived worse if they had not been informed of the real situation.

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6. Problems in connection with work and expenses

The patient suffering from cancer generally has a great need to be close to family members and friends.
Of course, this need is in contrast to other practical necessities, and it is inevitable to make sacrifices and adopt difficult compromises.
You may be compelled to neglect work or abandon it, at least temporarily, to be in the impossibility of being able to remain close to other members of the family, to reduce meetings with friends and acquaintances.
Of course, if the patient has to stay for a long time in a place far from home, the difficulties increase, including those of a psychological nature.

Even when medical treatment is free, the burdens to face may be heavy (travel expenses, board and lodging, loss of earnings).
Sometimes, e.g. in case of urgency and lack of availability of public medical structures, it is necessary to make use of private facilities. The costs are generally quite high. In the absence of good financial resources and of broad health care assistance/insurance coverage, serious economic problems may arise.

It is not easy, but the worries due to these problems should not affect the patient, who needs serenity.

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7. Some possible effects of therapies

One of the side effect of chemotherapy and radiotherapy used against cancer is alopecia, namely total or partial hair loss. Not all of the antineoplastic drugs cause alopecia.
Alopecia caused by chemotherapy is generally temporary.
When Claudia was informed that chemotherapy was necessary, she became quite distressed (she had beautiful brown hair that subjected to sun turned rather fair and contributed much to her physical appearance). However, with her usual positive approach, she made an exhaustive search for wigs, paying attention to both quality and price (the cost of a wig may be high and Claudia found considerable differences in price for equal quality).
Subsequently, Claudia did not attribute much importance to alopecia.

Other side effects of chemotherapy suffered by Claudia: nausea, vomiting, sores in the mouth and throat, dry mouth, fatigue and anemia.
Especially during and after high dose chemotherapy, with transplantation of her own staminal cells, her values with respect to red and white blood cells, haemoglobin and platelets were very low, but this had been foreseen.
Among the side effects of chemotherapy, notwithstanding the various antiemetics taken, nausea and vomiting caused severe problems. Moreover, Claudia liked good food (although not some foods, for example cheese) and often insisted, although aware of the high risk of vomiting, on eating her preferred dishes, also in good restaurants.

Sterility, temporary or permanent, is one of the various damages that chemotherapy and radiotherapy can cause. In case of risks on this regard, and of course depending upon the age, this issue should be analised as soon as possible before starting the therapies, for example in order to evaluate - for male patients - the recourse to sperm banking, a procedure that freezes sperm for future use and - for women - the ovarian tissue cryopreservation and ovarian transplantation.

The courage and the strength of will of Claudia were extraordinary, but as experience gained in the various hospitals where she stayed, many other patients were seen to react with strength, dignity and sometimes with an attitude of challenge. Among other things, the writer remembers: a woman of about thirty years, quite refined in her appearance, who almost showed off a leg amputated due to surgery and alopecia and by her attitude seemed to state: I am proud to still be a woman, a fine-looking woman with many values (indeed, she was such); a child of about twelve, with a leg seriously damaged by surgery, who had played a lot of sport and always showed an extraordinary serenity and the wish to continue the sport activity; a child of about eleven, beautiful and intelligent, she too with severe effects of surgery in a leg, who together with the innocence of her age showed a quiet awareness and the maturity of one of twenty; a girl from the Campania region, for whom Claudia felt much affection, having a strength of will similar to that of Claudia; and other patients of various ages coping with the therapies and pains with apparent tranquillity, never complaining, and showing interest beyond the illness.

In conclusion: in the departments where the cancer is cured one can frequently meet admirable persons, who can provide important teachings.

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8. Therapies to limit pains

The writer, probably a victim of old prejudices, thought that it was appropriate to fight physical pains that cancer can cause by enduring them mainly with the strength of will. The experience of Claudia and the unanimous opinions of the doctors in charge show how generic diffidence to the therapies to limit pains is erroneous.
Undoubtedly, morphine and other drugs can involve dependency and serious side effects, and consequently they must be administered with professionality and caution. However, obliging the patient to suffer because of prejudice is a matter of ignorance and lack of understanding another's pains and can prejudice the strength of will and the natural defences of the patient.
While the therapies to limit pains are quite important, they surely require specific knowledge and continuous surveillance. In fact, it may be necessary to modify them depending on the situation, in the case of extreme side effects, or when their effectiveness decreases. Accordingly, for these reasons, too, it is essential to rely on specialists.

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9. Personal relationships

A condition of social isolation tends to arise with respect to a patient suffering from cancer, and in any case the disease causes considerable existential modifications. Personal relationships among the patient, the family members and friends undergo changes. These can be negative but also positive.
The patient always remains in the first place a person, but the personality may be considerably different from that before the disease. In order that the changes are positive it is essential that the patients do not withdraw into themselves and fall into despair.

The illness may create a very favourable condition so that determined personal relationships become more profound, and relationships affected by problems of poor communication and incomprehension open suddenly and deeply.
In a positive aspect, this was certainly a characteristic of Claudia's disease. The feeling towards almost all of the friends deepened and in the family, with respect to her mother, father and sister, the same thing happened.

In a particularly intense manner in the last month before her death, communication and love between the writer, her father, and Claudia could fully open, overcoming incomprehension and reticence that had hindered them. This happened while maintaining, at least partially, preceding character features and without eliminating differences of opinions that however took a different aspect, which was generally constructive.

In the approach with the patient, each family member and close friend person must be natural and in harmony with his/her personality. Sincerity and spontaneity are of basic importance. In connection with general issues, it is important to have a uniform approach, but for specific themes unnatural behaviour should be avoided.
On the other hand, it was the same Claudia to direct conversation depending on the interlocutor, knowing what was easier for her to give and receive.
During the illness, the relationship among Claudia, her mother and her father was sometimes complementary, just because of the differences in character and sensibility. Thus, she used to talk with her mother, enjoying it, in various arguments that possibly her father considered futile, but which were important for her. Similar things happened between Claudia and her sister.

During the disease, the difficulty of communicating with some persons can increase, due to lack of comprehension or because the same patient is inclined to avoid situations that may increase his/her problems, rather than giving help. Similar events can take place among the relatives of the patient and their friends.
For example, while Claudia's capacity of socialising had generally increased, in certain case she was very reserved.
The relationship with old and recent friends and other persons who assisted her during the illness was open and constructive. During the last month of her life, many friends visited her almost every afternoon and she got great benefits from this. She had become more and more sensitive to the important things in life, while maintaining the capacity of joking and talking about apparently futile matters.

She was rather reserved with other patients and their relatives, apart from persons who manifested a positive approach toward illness.
On this last point, it appeared that especially children and young patients have a serene and positive behaviour in connection with the disease, and few of them are inclined to despair, passive resignation, and continuous lamentation.
This can be influenced by the attitude of the persons in contact with the patient.
While it is often easier to be or at least to seem serene and trustful before a young patient and communicate with him, appearing spiritually close and facilitating sincere and spontaneous approaches, more difficulties are likely with adults and the aged, so that proximity can become only physical or pitiful and reticence and barriers of isolation take place, which can become insurmountable if a real communication is not reached.

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10. Diagnostic-therapeutic "implacability" and euthanasia

Without the pretension to express a general opinion on these important but very difficult issues, it appears proper to point out again that the last period of Claudia's life, before her death, offered to her and the persons close to her times of great spiritual richness. This was possible in view of her internal strength, but also due to the effective domiciliary assistance received, the love and the understanding surrounding her. So, the last month of Claudia's life was not merely a period of physical and spiritual pain. On the contrary, it was probably the period in which the transmission of spiritual values among Claudia and the persons close to her reached the maximum intensity. She was aware of this and from this awareness got the strength and capacity to fight until her death.
Some days after having been informed that death could not be avoided she had asked to the writer to help her to die should the physical and mental pains become extremely intense. Indeed, during the last month, very often physical pains were quite strong (the therapies to limit pains, based on morphine and other drugs were not so efficacious as Claudia had hoped), but the awareness of what she was giving and was capable of receiving removed from her the hypothesis of death as a liberating event.
Thus, up to the end, she fought to live in a better way, also in connection with apparently marginal aspects. She took great care of hygiene and physical decorum, and wanted to present herself in the best way possible.
She was actively interested, through questions to the doctors in charge, in possible new therapies that could help her, without wishing any therapeutic implacability.
Often, she had difficulty in sleeping during the night and in the morning the effect of morphine caused a state of torpor. However, in the afternoon and in the evening, when the visits of friends were more frequent, she was lucid and serene and liked to talk about most various topics (she did not speak much about the disease and the pains, essentially only to inform the friends, without any complaint). When the friends' visits were planned but she felt quite unwell, she phoned them asking them not to come.
Of course, not all sick persons are able to positively live until death, due to differences in the state of the disease and in personal temper, but Claudia demonstrated that even with strong pains and awareness of imminent death the remaining life can have immense values.
In substance, without the pretension to give a thorough opinion about euthanasia, it is certain that this issue should be considered with great caution, without superficially relying on determined ideologies.

While it appears extremely important to bring into being all the conditions in order that the terminal patient live in the best way until death, the writer deems that the diagnostic-therapeutic implacability (that Claudia did not suffer) may be pernicious for several reasons, for example with respect to the dignity of the patient and of the persons close to him/her, not to say of the economic burdens that would be better dedicated to real scientific progress.

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11. Assistance to terminal patients

As already mentioned, it was very important for Claudia to live at home in the last period before her death. Probably, she would not have enjoyed and given to others moments so rich and deep if constrained far from home and her friends, in a hospital bed, despite efficiency under all aspects.
Thus, domiciliary assistance was of great benefit to Claudia and the persons close to her.
Indeed, the availability of effective domiciliary assistance that is more and more concrete and diffuse, appears of the utmost importance.
A remarkable characteristic of this assistance is that the members of the family of the patient are put in a condition, upon suitable instructions, to actively co-operate with doctors and nurses in administering drugs orally, by injections, instillation and in other tasks that in hospital are dealt with by nurses and other personnel. Of course, the administration of drugs is made according to doctor's prescriptions. For the family members, to carry out these tasks is of practical and psychological benefit.

In connection with the domiciliary assistance, and the co-operation of the family members, an event which occurred the penultimate day of Claudia's life is interesting and also amusing.
In the last period it had been necessary to considerably increase the morphine dosage, because Claudia complained of a continuous worsening of pains, especially in her back area. Of course, this was causing stronger side effects, which were heavy also due to the very poor conditions of her liver. The doctor responsible for the domiciliary assistance made the hypothesis that Claudia's increasing requests for administration of morphine (she was afraid of morphine due to the consequent nausea and vomiting) could be due, at least partially, to psychological reasons and suggested to try to omit one of the doses, substituting a placebo for it. A first time, in the afternoon, the expedient apparently was successful. However, during the night of the following day, an hour after administration of another placebo, Claudia said that the pains were very high and therefore her mother administered morphine. After less than an hour, Claudia still complained of strong pains and consequently (it was about 3 a.m.) Claudia's mother phoned the doctor asking whether she could administer another dose of morphine. The answer was negative, since sufficient time had not passed after the last dose. However, Claudia immediately understood that there was an incongruity, pointing out that an equally short time had elapsed between the last two administrations (one of which consisted in a placebo, but she was not aware of it). So, she demonstrated lucidity even on that occasion.

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12. Therapies not acknowledged by the official medical science

From the moment the diagnosis "cancer" is given, a word that terrifies many persons, it is probable that friends and acquaintances, in perfect good faith, but most of the times because of emotional and irrational reasons, suggest therapies not acknowledged by official medical science. Almost inevitably, this happens when, in accordance with medical official science, it is stated that no further possibility to apply other therapies consolidated at international level does exist.

Serious medical structures may then propose, but without giving illusions, possible therapies under experimentation for the specific kind of tumour, or for similar types. It is deemed that this possibility should not be underestimated, also in order to promote the scientific progress.

There are also therapies that, although in a limited scope, are considered applicable and effective by medical science. For example, this is the case in administration of marijuana (Cannabis), allowed in some countries, but not in Italy, as at least partial alternative to entiemetics that for Claudia often did not give sufficient effects. Various doctors met during Claudia's disease declared to be favourable, or at least not hostile to marijuana as an antiemetic drug but - obviously, for several reasons - they stated it to be impossibile to administer and to give indications about dosages.

As already mentioned, a different case is that of therapies that do not appear to have a completely scientific base, but often find fertile ground in despair and ignorance, and are the object of various types of speculation.
May be that the proposal and the use of these therapies have a beneficial effect on some patients at psychological level. However, for other patients, the effect can be deleterious, cancelling or lowering the rational and positive approach toward disease and preventing or delaying the use of more valid therapies.

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13. Further information

As already pointed out, Claudia always coped with her disease maintaining a positive spirit and dignity and relying on medical science.

Claudia's ashes are located in the communal cemetery of Pianoro Vecchio, province of Bologna, Italy, in ossuary sector F, row 5, place 85.

(September 2002)

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